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All Shakespearian jokes aside, when our bodies are hurting and our joints are unstable, pain can make us desperate for relief. Sometimes we turn to bracing as a solution. While braces have been used since before Shakespeare's day, like many other types of technology, they have changed significantly in recent decades. Braces have evolved over time from simple rigid wooden splints that were tied around an injured limb, to being made from a variety of materials with hinging joints, and movement assisting components. There is a delicate balance to keep between improving stability, without losing too much mobility. (See Ehlers Danlos: Is Stretching Safe? ) But before we get into what kinds of bracing are helpful, it's best to take a step back and evaluate the problem. Why do we want to use braces in the first place? How we approach bracing can vary for the different groups. We'll tackle their individual needs in sections, and then talk about types of bracing. People who are considering bracing fall into several categories They have unstable joints that are at risk of dislocating (i.e. Ehlers Danlos) They have chronic pain with movement (i.e. back pain) They're interested in injury prevention /protection while performing heavy activities. They have neurological damage that prevents them from controlling their joints (i.e. after stroke or spinal cord injury) They are recovering from injury like a surgery, or a broken bone. Then we'll consider the pros and cons of different types of braces: Compression/sleeve braces Splinting braces Movement assisting braces Unstable Joints & Dislocations When joints are unstable and have a history of dislocating, bracing can help provide some added stability. It's important, however, to first evaluate why the joints are unstable. Joints are held together by ligaments and muscles. Some level of coordination in our nervous system is also required to use our muscles at the right time to support the joint. Sometimes instability is due to genetic connective tissue disorders which make the ligaments too loose that are supposed to hold the joints together. People who experience chronic instability in one or more joints may benefit from screening for Ehlers Danlos Syndrome (EDS), or Hypermobility Spectrum Disorder (HSD). Because our bodies have more than one system to hold the joints stable, sometimes working with a physical therapist who specializes in these disorders can train the muscles to better support the joints. In some cases, this may improve the joint stability so that bracing is not necessary. For other individuals, a past traumatic injury caused a dislocation and weakened the ligaments. As a result, the joint has become chronically unstable. Depending on the degree of laxity (or looseness) of the joint ligaments, a physical therapist and an orthopedic doctor can help determine if the muscles can be taught to compensate, or if surgery or bracing are better options. There are also temporary causes of unstable joints, such as pregnancy. The hormones in the body shift during this time to allow for greater flexibility in the ligaments so that the pelvic bones can shift to accommodate a child as it grows. Bracing can be an attractive option for managing sacroiliac pain, back pain, and other pregnancy related issues especially because many treatment options (such as medications) are limited during pregnancy. Chronic Pain with Movement There are many reasons for persistent pain with movement. For some, this is a localized sensitivity in one part of their body. For others, it is widespread and affects them globally. In order to treat pain effectively, the treatment has to be aimed at the root cause of the symptoms. In most of these instances, bracing is intended to help manage pain, but not cure it. The brace may be something that is required for the rest of your life. While this is appropriate for some, it is always good to check first that there is not some underlying cause that can be cured. If a brace is successful in helping manage your pain, then it's likely that the way you are moving is contributing to your pain. If that is the case, then there is hope that teaching you how to move differently can help. Managing chronic pain is complex and should involve individualized medical care and solutions. It's important to work with a team of healthcare providers, and to get multiple opinions. If one physical therapist or one orthopedic surgeon is unable to help with the problem, it may be beneficial to consult two or even three. Different providers may have been trained at different schools, or in different time periods. As a result, they may think differently. While the older provider may have more experience, the younger provider may be up on the newest discoveries in research that could hold the answer to treating your condition. If you live in an area that is more rural, or where the medical community is composed of people who all went to the same university, going out of town for another opinion may also help. Exposure to healthcare providers who were trained at different schools, or lived in a more transient big city where they are exposed to different ideas, can provide some new perspective on your case. Injury Prevention For those who engage in repetitive sports, high impact sports, heavy weight lifting, or contact sports, the goal of bracing is to prevent an injury. Repetitive sports, like long distance running, or dance can put repeated strain on the same tissues. Minor flaws in technique, if repeated over and over, can predispose you to overuse related injuries. Braces may help to offload joints during heavy training phases, but it can also become a crutch an athlete is dependent on. High impact sports like gymnastics can put athletes at risk of injury. This is especially true when learning a new skill and frequently making the same error in form and technique. A brace can be temporarily helpful, but may also restrict movement. Weight lifters may use bracing when they are increasing their weight for the first time to protect them if the added weight causes a failure in their form. They might also elect to use braces consistently when lifting very heavy weights. This, however, is for athletes who are competing at very high levels. For gymnasts and weightlifters, bracing is most often helpful in the transition phases. Using it constantly, however, can cause the muscles to become lazy. After all, why should the muscles keep working hard if the brace does their job for them? This can actually make the person more likely to get injured when they aren't using the brace, because the muscles intended to hold them stable have weakened or gotten used to not needing to work at the right times. In regards to contact sports athletes, some braces can provide a layer of protection from injury. The same braces, however, typically restrict your movement and may limit you from moving freely on a regular basis. It can also signal to an opponent a weak point to take advantage of. Neurological Injury After injuries like a stroke or a spinal cord injury, the nerves may be damaged to the point that they cannot tell the muscles to contract. If this decrease in muscle tone and voluntary control of the muscles occurs, all of the stress of maintaining stability in the joints is placed on the ligaments. Over time, the ligaments will wear and stretch out from the added strain, which can lead to pain and injury. In light of the fact that the muscles may not be trainable, after physical and occupational therapists have tried to rehabilitate the nervous system as much as possible, a brace may be necessary. Injury Recovery Typically, individuals recovering after a surgery, or a broken bone, are using braces under the direction of their doctors. That being said, it is ok to ask questions about the purpose of using the brace. For example, if an ankle ligament is sprained to the point of a near complete tear, a brace may be appropriate for a period of time while the tissues heal. The risk of the muscles not performing correctly and the added strain on the ligament causing a complete rupture of the ligament, which would then require surgery, may be too high. On the other hand, when using an ankle brace on a milder ankle sprain where the ligament tearing is minor, may be counterproductive. It may only weaken the muscles and put the individual at increased risk of injury later when they make the transition out of wearing the brace. It's best to consult your physician and your doctor of physical therapy to determine the best solution for you. Types of Braces Compression/Sleeve Braces These braces are commonly available at local stores, especially for knees and ankles. There are a few benefits to this kind of brace. First, the compression can reduce swelling and improve blood flow. This can be helpful if you are prone to swelling and poor circulation. This can also occur with some endurance athletes, like runners, who push their cardiovascular system to perform for a long time. People who have dysautonomia conditions like POTS, may benefit from this type of brace. It is important , however, to be cautious about how much compression is being applied. Braces that are ill-fitting and too tight can restrict blood flow from your tissues, or even cut off circulation. Braces that aren't tight enough may not help at all. Second, the compression provides added feedback to the nervous system. The compression of the nerves, while mild, can improve the body's awareness of changing positions of the joint. These braces can be helpful for individuals with poor proprioception (awareness of where their body is in space) due to connective tissue disorders like EDS that effect the ligaments. Many of the nerves that sense proprioception are located in the ligaments. (see Perfecting Proprioception: coming soon). They may also benefit individuals with neurological damage to their sensory system but who have intact motor function. If the nature of a stroke leaves a person with limited feeling in the joint, but they still have the muscular ability to control the joint well, this brace may help give them better sensory input. Third, there are psychological benefits. Putting on any brace can give you a sense of security in feeling like you've done something to protect yourself. It can also give you a sense of control that you are doing something helpful and can be empowering from that perspective. Some other benefits to these braces are that they are generally inexpensive, easily accessible, can typically be washed, and don't restrict mobility very much. The downsides to these braces are that they don't provide very much support, and the elastic compression typically wears out over time. Splinting Braces These braces restrict movement in varying degrees in order to protect certain tissues from being loaded/stressed. They are most often used after injuries have occurred. Some of these braces prevent any motion at the joint (such as a plaster cast on a broken arm, or a finger splint on a broken finger). There are others, however, which are used after surgeries to allow a joint to move in a controlled range of motion. For example, the surgeon may set the brace to allow your knee to only bend a certain number of degrees while you are recovering. You may also see these braces commercially available in the form of plantar fasciitis boots that you wear to keep your foot in a good position while sleeping, or a carpal tunnel brace to keep you from balling up your fists at night while you sleep. The benefits of these braces are that they offer a higher level of protection and stability for the joint. This can be ideal in the presence of significant tissue injuries, such as broken bones, surgical tissue repairs, or severe ligament tears. They may also be appropriate for positional support at night. The negative consequence of that higher level of stability, however, is that you lose mobility. While this doesn't matter as much at night while you sleep, these braces can limit your ability to perform daily movements. Consequentially, because the braces are providing stability and restricting movement, they can lead to muscle weakness from disuse of the muscles in some cases (especially if worn all the time). Additionally, they may negatively impact surrounding joints. If you are unable to move one particular joint, the body will often compensate by using the joints above or below to help you move. For example, if you are wearing a walking boot that restricts the movement of your ankle, it will place added stress on your knee. Furthermore, the uneven height of your footwear between the walking boot and your shoe, can cause a leg length discrepancy leading to hip/lower back problems. Movement Assisting Braces These braces are designed to help encourage good movement patterns. They might utilize springs to assist movement, specifically woven fabrics, or even electronic components. These braces can encourage movement patterns more actively. Some of them which are predominantly in a research phase even utilize electrical stimulation to encourage muscles to contract. This can be a great option for people who have lost nerve function and can't perform a movement voluntarily. Unfortunately, however, while the Anakin Skywalker mechanical hand replacement is on the horizon, those braces are generally not commercially available and are expensive due to the newness of the technology. More available forms are spring loaded, to trigger a motion when you apply pressure to the device in a certain position. These braces usually are made and custom fitted by a skilled provider called a prosthetist. They often require some training for you to learn to utilize the braces correctly. These braces are costly, but may be covered by insurance in some situations. They are generally designed for people who are unable to perform a movement voluntarily. The forms that utilize specifically woven fabrics are designed to facilitate movement with tension. The concept is similar to the utilization of kinesiotape. The tension and pull of the tape/fabric can encourage movement in different directions, if the nervous system is intact, to be able to feel the pressure/tension. This triggers the muscles to move in a certain way. It is intended as a low-grade support. It assists the movement, but cannot completely perform a movement for you. If you aren't sure if this type of bracing is for you, kinesiotape can serve as a trial run. The brace has advantages over the tape if you plan to use it on a regular basis, or if you have adhesive allergies. Overall, movement assisting braces can be helpful if the muscles are not able to perform a movement independently for neurological reasons. The custom fit braces also have advantages compared to generic in terms of fit and comfort. Depending on the degree of movement assistance, the muscles may still work some, which can prevent muscles weakening due to disuse. Some drawbacks of movement assisting braces include cost, accessibility, and the tendency of the muscles to become weaker due to disuse. If the brace is performing the movement, the muscles are not required to work to do so. The above information is intended for educational purposes and is not a replacement for individual medical advice from a licensed provider. If you're looking for specific recommendations for products, message or call our office to set up an evaluation for personalized recommendations.

Receiving a medical diagnosis is a complicated subject. At first, it might seem sacrilegious for a healthcare provider to even suggest that sometimes it isn't worth it to get a formal diagnosis. In fact, the sheer suggestion of it, and the potential liability I would face if someone didn't go get diagnosed with something important makes me hesitate in writing this article at all. H owever, in the interest of informed consent on the part of patients, and good clinical decision making for providers, I'll continue on. But first, in the interest of healthy disclaimers: The information in this article is not intended to replace individual medical advice. It is intended for educational purposes only in order to assist patients and providers in considering their options and motives for pursuing healthcare services/diagnosis. You are encouraged to seek individual medical advice regarding your personal health from licensed providers. Everyone does some degree of self diagnosing on a regular basis. We all decide whether or not the aches and pains of life require patience, self care, or medical attention. As we attempt to make wise decisions about how and when to utilize the healthcare system, it's important for both patients and providers to ask ourselves, "Why are we seeking a diagnosis?" Deciding whether or not to pursue getting a diagnosis for a condition should be based on your individual needs/circumstances, and the type of condition. Unfortunately, those are often not the only factors at play. Getting a diagnosis involves both the patient, and the healthcare providers they work with. Both parties have their own motives to evaluate, and should be aware of each other's points of view. Let's step into both perspectives of the patient and the provider , then take a look at the questions to ask yourself in deciding what is best for you. The Patient: To be clear, patients are by no means a "one size fits all" group of people. There are a variety of attitudes people have towards seeking and receiving a diagnosis. On one hand, receiving a diagnosis offers some degree of validation of your symptoms. It legitimizes your experience to others and comes with documentation that you can use to advocate for yourself in your school, workplace, or even with your family. On the other hand, it is time consuming, and often involves testing that is expensive, anxiety producing, and/or uncomfortable. Fear is a major motivator for human behavior. The question becomes, what is the object of our fear(s)? For some, the fear of the medical bill is so great, they would rather risk dying than go to the emergency room. For others, perhaps the fear of embarrassment from having to tell someone about their symptoms prevents them from seeking care. Maybe the fear of the pain that may come with testing, or a fear of needles influences a person's decisions to see a doctor. For some, a fear of death is ultimately the strongest motivator. The fear of the unknown often drives patients to seek diagnosis. When you can't explain your symptom(s), some of us begin to worry. All it takes is a few keystrokes and the infamous "Doctor Google" can quickly have your head spinning with a hundred possibilities. While some of the options seem harmless, others could be lethal if left untreated. The internet can be a wonderful tool in accessing information, but it's algorithms aren't always able to decipher which information is most relevant for your personal situation. While Artificial Intelligence may admittedly have increasing roles in healthcare in the future, for now it isn't ready to replace your doctor. It doesn't know which follow up questions to ask you to gain more information that might be relevant. In short, the internet isn't a replacement for your doctor's medical degree and the years of experience they have in patient care. While having a name (diagnosis) can be relieving for some, it can feel like a label for others that they will now have to carry with them through life. The burden of knowing, and then the obligation to deal with that diagnosis accordingly can feel overwhelming. For some people "ignorance is bliss", at least in the short term anyways. The Provider: There are several factors in clinical decision making to decide whether or not to pursue diagnosing a patient. Some of them are in the patient's best interests. Others have more to do with protecting the provider's interests. While one might want to believe that the provider always has the patient's best interests at heart, providers are people too. Just like patients, providers live in a real world with financial pressures, societal expectations, and bosses that have expectations of them as well. In truth, many health care providers live their lives in suppressed fear of being sued for not being able to find the correct diagnosis for a patient, so the idea of even suggesting not seeking a diagnosis sounds ominous. By nature, most providers will be inclined to order every kind of test for a patient to search for a diagnosis, rather than to risk missing something important. The AMA's analysis shows that over 30% of doctors have already faced at least one lawsuit ( 1 ). While it varies by specialty, studies suggest about half of doctors will be sued at some point during their careers ( 2 ). It is an important part of the legal system for patients to be able to sue. However, while legitimate cases of malpractice do occur where compensation for patients is appropriate, there are also some lawsuits that are made for a variety of reasons that are misguided. While courts exist to adjudicate these proceedings, it can be an expensive and time consuming process for all parties involved. This is no secret to providers. Lawsuits can be an incredibly stressful experience they would rather avoid. Healthcare workers, in general, have struggled with higher than normal rates of burn out, and depression since the pandemic ( 3 ). Sadly, most providers who are sued will experience some degree of anxiety and depression. Lawsuits are also associated with increases in suicidality and divorce rates amongst healthcare providers. Aside from the fear of the public humiliation, stress of a legal trial and fear of losing their license/livelihood, there is the financial pressure. There is financial pressures on healthcare providers both to not lose money by being sued, but also to make money and meet the productivity standards of their employers. Between the two, it's enough to make most providers willing to hand out orders for medical testing like candy on Halloween. Ordering more testing, and prescribing more treatments can help providers meet those productivity standards in some cases. The fact that the provider often doesn't know what the testing will cost you, (because it varies by your insurance) makes them even more removed from the fact that healthcare costs something for the patient. While most providers try to consider this and genuinely care about their patients, they have a limited amount of information regarding the financial implications for the decisions they make. It's no secret to patients that the cost of healthcare is a significant financial burden on American families, especially those who have rare and/or chronic illnesses. One 2007 study found that 62% of bankruptcy filings in the United States were due to medical bills ( 4 ). Pursuing testing to get a diagnosis ultimately costs patients something. Even if you don't pay for your healthcare directly, there is always a cost, even if that cost is your time. It also bears mentioning, that even if you don't directly pay for your healthcare, someone does. Whether it is taxpayers, or a hospital that has to cover the cost of the treatment provided (if for example a person declares bankruptcy), someone ultimately pays for the cost. Far beyond money, your time is valuable, and time spent getting testing, is time that isn't spent with your family, on your hobbies, working, etc. Questions to Ask: So, as you decide whether or not seeking a diagnosis is worth your time, money, and energy, here are some things to consider. Is not getting diagnosed dangerous? Does getting diagnosed give me access to any new treatment options? Am I willing to undergo those treatment options? Does getting diagnosed mean I will have a negative stigma? Does getting diagnosed help me to get any help/services at work/school? Does getting diagnosed help me to get disability? And if it does, do I really want it? The most important question to ask is about safety. This can vary widely by what you are being diagnosed with. For example, if I am 65 years old, having chest pain, shortness of breath, and pain in my left arm, and I think I may be having a heart attack, not getting diagnosed is dangerous. In a different scenario, if I developed a stuffy nose and itchy eyes for a week in the spring when all the flowers bloomed, and it went away afterwards, if I decided not to pursue formal allergy testing to determine which type of pollen I am allergic to, it is less likely that I would suffer any immediate harm. This question applies more specifically if you already have an idea of what diagnosis you are seeking. If you have symptoms that you can't explain and aren't sure what could be causing them, it's usually best to be safe and leave it to the experts. While the internet can be a helpful tool, it is not a replacement for a medical degree. Most people are so trained by the healthcare system to seek out a diagnosis, that we don't think much about what happens after that. The truth we eventually will come to find, however, is that there are several diagnoses that medicine doesn't have many treatment options for. The treatment options available are also sometimes things that don't require a prescription or any skilled medical service. If you have a diagnosis in mind, it's worth a quick internet search to see how that diagnosis is treated. When I was a child and my older brother got the chicken pox, (after which I soon developed a similar rash) at the time, the treatment was simply to stay home, take a bath and try not to scratch. My mother decided not to take me to the doctor to be formally diagnosed with something that she already knew was probably chicken pox and didn't change my treatment plan. She felt it would have been a waste of time and money. To consider another perspective, the potential treatment options that require intervention by a healthcare provider might be something you are not willing to do. If a person is experiencing symptoms of depression, but they do not want to take antidepressants due to fear of the stigma associated with taking mental health medications, they may choose not to go to the doctor. If their preferred approach to management is to first try to improve their diet, exercise and sleep habits to see if the symptoms improve, a doctor's visit may not be needed to accomplish those things. While the stigma around mental health disorders is unfortunate, and seeking treatment should be seen as a sign of wisdom and strength rather than weakness, not everyone agrees. There are many disorders for which the stigma gives people pause in their decision to pursue getting a diagnosis. Sometimes the motivation for getting diagnosed is the accommodations you may gain access to because of the diagnosis. If you are formally diagnosed with migraines, even if you aren't willing or able to take the medications a neurologist might prescribe, it may allow you to apply for FMLA to have excused absences at your job. It may allow you the ability to go lie down in the nurses' office at school until your parent can come pick you up and not be penalized for needing to present your science project to the class another day. There are all kinds of accommodations that you can seek for a variety of disabilities. Medical documentation can give you some legal ground to stand on when making your requests. Disability is a tricky subject. There are a variety of valid reasons to seek disability. While many people who seek disability do so honestly and for good reason, there are some who do not, which can make navigating the system challenging. It can take multiple applications, over a number of years for a disability case to be approved, and it may require hiring a lawyer. By the time you pay for all the medical bills to get proof of your disability, it may or may not be worth it. One doctor's opinion is sometimes not enough to convince the government of your disability. It can be a long road to get a diagnosis, which doesn't even guarantee being awarded disability. At the end of the process, some people wonder if it may have made more sense to spend that money on a career change. The financial compensation from being awarded disability is often less than what you made at your job before. People have to consider all of their options carefully based on the extent of their limitations/disability, their alternative career paths, and the amount of money disability would give them. Then they can crunch the numbers to decide what is the right path for them. In summary, the decision to seek a diagnosis is a personal one with many factors to consider. This article should give you a starting point of factors to consider and give you more peace that you are making an educated decision as you make decisions about when to seek a diagnosis. (1) Medical Claim Liability Frequency Among U.S. Physicians by José R. Guardado (2) When will the lawsuit come? For doctors, it's a matter of time by Timothy M. Smith (3) Healthcare Worker Mental Health the CDC (4) Medical Bankruptcy in the United States, 2007: Results of a National Study by David U. Himmelstein MD, et. al.

Assuming that you can find a geneticist with the expertise to test for connective tissue disorders, there are many factors to consider in determining if genetic testing is right for you. In this article we'll walk through several questions to ask yourself as you consider whether or not to pursue genetic testing. 1.)  What is involved in testing? 2.) Is it dangerous not to get tested? 3.) What does it cost? 4.) How long does it take? 5.) How does this impact my family planning? 6.) How does it impact my kids? 7.) Will it change my treatment? 8.) Can my genes be edited/treated? 9.) Will it legitimize my diagnosis to other people? 10.) Will it help me to get accommodations at school/work? 11.) Will it help my disability case? 12.) Will it affect my insurance costs? While these questions are applicable for any condition, we'll use Ehlers Danlos Syndrome as an example to work through them for this post. What is involved in testing? The good news is that most genetic testing is not significantly risky and sometimes it isn't even painful. Genetic testing is typically done with either a saliva sample or a blood sample. Cheek swabs and blood draws are commonplace medical procedures that carry relatively few risks. Is it dangerous not to get tested? This depends on what your doctor is looking for. Most of the genetic variations of Ehlers Danlos Syndrome for example are not life threatening. If you have signs and symptoms of vascular EDS however, testing is more critical. In vascular EDS the connective tissue in a person's blood vessel walls is weakened. This can cause a bubble to form in the wall that can balloon outwards and eventually burst open. In medical terms, we call this an aneurysm. If left untreated, an aneurysm can eventually rupture causing a person to bleed internally. While this might not be serious in the smaller veins that can leave unsightly bruising, there are some places an aneurysm can be fatal. If an aneurysm develops in the brain, or in a blood vessel that supplies blood to the heart like the aorta, a rupture is a medical emergency. If you have a family history of aneurysms, or sudden unexpected deaths at younger ages it should be a red flag. Keep in mind that sometimes, deaths in the family may have been called a heart attack, and no one thought to look for aneurysms from EDS. The name for Ehlers Danlos Syndrome wasn't even suggested until 1936 (1) and was not commonly recognized for many years afterwards so many people went undiagnosed. Even today, the prevalence of EDS is difficult to estimate because many doctors are not aware of it, and many people have not been appropriately tested. As a general rule, if your doctor recommends genetic testing, and you plan to not have it done, it's important to let your doctor know. If may change their treatment plan for you. If a person is suspected to have vascular EDS and decides not to get genetic testing, their physician may elect to order other screening related tests to make sure that important blood vessels like the aorta don't have aneurysms lurking unseen. This type of testing is sometimes better covered by insurance than genetic testing. What does it cost? The truthful answers is, "it depends". While some genetic testing is covered by insurance, for many insurances and conditions it is not. When it comes the Ehlers Danlos, most testing is not covered by insurance. While the cost of genetic testing has come down in recent years, it's still wise to ask in advance what the cost of the testing the geneticist is recommending will be. There are several factors that can influence cost aside from insurance coverage. First and foremost, the cost will depend on how extensive of a genetic profile is completed. The geneticist may focus on testing for some genes and not others, genetic testing for connective tissue disorders is complex, and different providers may focus on looking for some genes and not others. Overall, as of 2024, testing will most likely cost somewhere between $400 and $2,000 for the tests themselves. The price of your genetic testing may also include other extra services like a counselling session with a genetic counsellor. Some labs may also offer discounts to your family members to have follow up testing if you have your testing done there. This is more common when the lab is studying rare disorders. They often offer reduced price testing for family members if it is valuable to the lab because they are using the data for a research paper. In this case, the cost to the patient is essentially subsidized by the grant funding which may be covering some of the testing supplies or the time of the clinician administering the test. Cost can also be influenced by travel. Finding someone with the expertise in the type of genetic testing you are seeking may require travelling. Fortunately, with the rise in popularity of telehealth services, even if the geneticist you want to see is not local, you may be able to see them via telehealth. The provider will then write an order for you to have the actual lab testing done at your local laboratory. You may be able to negotiate your price. Offering to pay up front in cash may get you a discount. If an office has to pay their staff to spend time chasing you down, it costs them something. No provider wants to pay postage to mail four bill notices before they actually get paid. They especially don't want to have to pay a collections agency to get their money. Some offices inflate the up front pricing of their bill assuming that they will need to pay out these costs. If you offer to pay cash up front, they may be willing to knock some money off the price. How long does it take? The actual test itself is fairly quick, saliva tests and blood draws generally take less than half an hour to complete. The length of time it takes to get your results can vary. You'll want to ask the lab for your specific type of testing what the turnaround time is. It may be as short as 10 days, or as long as a few months depending on the test and the lab. How does it impact my family planning? If you are of childbearing age and a genetic testing confirms that you do have a genetic disorder, it may be advantageous to meet with a genetic counsellor. They can guide you on your next steps. Depending on the disorder, you may want to have your spouse/partner tested. There are also some traits that are less likely to be passed on to your children than others. A genetic counsellor will educate you on the probabilities of passing a specific gene to your children. After learning this information, each person has to ask themselves if this influences their decision to have children. These are highly personal decisions for a couple. In the modern age, options for growing your family are more complex than a few hundred years ago. Having biological children naturally, and adopting children are no longer the only paths. This can lead couples to complex ethical conversations regarding surrogacy, in vitro fertilization, selective reduction of embryos, sperm/egg donors, and the degree of moral responsibility you have for your child's genetics. If the person being diagnosed with the genetic disorder is female, that disorder may also have implications for pregnancy and influence their labor and delivery options. (Coming soon, See: Ehlers Danlos & Pregnancy) Ideally, your genetic counsellor will help direct you to counsellors, OBGYNs, pelvic floor physical therapists, and other healthcare providers who can help you navigate these topics. How does it impact my kids? If you already have children and then have genetic testing done which confirms a genetic disorder, most parents' thoughts turn quickly to their children. When it comes to disorders like Ehlers Danlos, getting tested yourself may save your kids from having to pay to have the testing done. The diagnostic criterion for EDS specifically allocates points to having a first degree relative who has already received a diagnosis. This can make getting a diagnosis for your children significantly easier. It also means that you have the opportunity to get your child treatment sooner than you did. Many adults who go undiagnosed with a disorder for a long time have many, preventable negative experiences. People often experience some degree of anxiety around symptoms that occur for unknown reasons. Having a name for a disorder can alleviate this and allows the child the opportunity to adjust to having the diagnosis. It may influence their ability to get treatment at a younger age. Depending on the disorder, this can slow the progression or prevent injuries. For example, in Ehlers Danlos, getting a child into physical therapy early may prevent them from suffering with repeated sprains and joint dislocations. Having a diagnosable disability, may also help them gain access to accommodations in school if they are unable to perform a certain activity in gym class. Parents getting diagnosed can also help reduce the impact of gaslighting for their kids. Many adults with Ehlers Danlos have painful experiences of interactions with healthcare providers, teachers/coaches, employers, and even their own families who did not believe them about their symptoms. (See: Medical Gaslighting: and what to do about it) As a parent, you have an incredible opportunity to give your children a better life than you experienced. You also have the opportunity to lead by example. Getting good treatment for yourself models healthy habits for your kids so that they will know how to take care of themselves as they grow up. Will it change my treatment? This can vary widely by the genetic disorder you are being diagnosed with. Genetic testing helps to establish a genetic profile, but it isn't actually a treatment in and of itself. Whether or not the genetic testing influences treatment is an important factor in whether or not it is worth the investment. To use Ehlers Danlos as an example, genetic testing helps to establish a genetic profile, but there are no prescription medications that specifically reverse the effects of a connective tissue disorder. While your doctor may prescribe some medications to manage your symptoms, you will have been aware of those symptoms without a genetic test. (See: Is Getting A Diagnosis Worth It?) The primary treatment for Ehlers Danlos Syndrome is physical therapy. A skilled physical therapist will be able to see the hypermobility in a person's joints and treat it accordingly regardless of what the genetic typing is. When it comes to physical therapy, unless a person is specifically diagnosed with vascular EDS, genetic testing is unlikely to significantly change their treatment plan. Can my genes be edited/treated? There is hope on the horizon that gene editing technology may become available in the next few decades. Crispr technology was approved for the first time for clinical use by the FDA in December of 2023 to treat sickle cell anemia (2). Provided that it continues to be proven beneficial, it is likely that the FDA will begin to approve its use for other conditions. This is a complex subject of medical ethics. The FDA is not likely to approve gene editing in children anytime soon. It will most likely begin to approve the technology's use for conditions that do not have other alternative treatments, and conditions that are life threatening or disabling first. Given that pharmacologic treatment options for EDS are limited, it may be one of the patient populations to receive earlier approval. Will it legitimize my diagnosis? This may or may not be an important factor in the decision to pursue testing. If the people in your life are supportive regardless of whether or not your diagnosis is confirmed by genetic testing, this may not be relevant. If on the other hand, people in your life are skeptical of your condition, genetic testing may help legitimize your diagnosis with family, friends, coworkers, bosses, and doctors. It is important to remember however, that genetic testing is not a perfect science. The human genome was officially completed in 2003 (3). The intent was to simply label all of the genes so that they could then begin to discover what each gene is responsible for. Genetic science is complex, and some genes interact with others which can affect what traits and disorders are expressed. It is important to remember therefore, that if genetic testing does not provide a diagnosis, it does not mean that a person does not have a genetic disorder. Genetic testing is more helpful for confirm a diagnosis, than it is to rule it out. Will it help me to get accommodations at school/work? While many schools and workplaces are willing to trust a person who comes forward with a disability and accommodate them, some are not. If documentation of your condition is required, typically a signed letter from your physician is sufficient to have your requests for reasonable accommodations met. Employers are legally required to make reasonable accommodations for people with disabilities. It may be wise however before you ask for something to research what is legally considered "reasonable". If you insist upon needing an accommodation that is deemed to be unreasonable, it can be grounds for an employer to move towards letting you go. They can argue that you are unable to perform your job without an accommodation that is unreasonable and use it as grounds for termination. If your doctor is hesitant to make a diagnosis without genetic testing however, you may need to have the testing, or look for a different doctor. Your doctor's reluctance to make a diagnosis without testing may not be because they don't believe you. We need to remember that doctors are under a significant amount of pressure to make correct diagnosis to avoid liability claims. The expectation in medicine is perfection, or you open yourself up to a potential lawsuit. This makes many doctors inclined to defer to objective testing to support their documentation so that they are not personally liable for an incorrect diagnosis. Will it help my disability case? There are many factors that influence whether or not a person is deemed eligible for disability. Qualifying for disability is more difficult for some conditions than others. The process commonly involves initial rejections of your claim and repeated attempts to obtain disability. This can be time consuming and costly. If you are trying to get disability, it is best to consult with a lawyer regarding whether or not getting genetic testing adds value to your case. Will it affect my insurance costs? If you live in the United States, the Affordable Care Act provides specific legal protections against discrimination based on pre-existing conditions. While this may keep a company from denying a person coverage, it may factor into your premiums in the long run. Health insurance companies are a business. They have employees to pay, and often shareholders and investors to keep happy. Insurance companies use complex algorithms to anticipate the cost of care for the people enrolled in their plans. That being said, the number of diagnoses that show on your chart may influence those algorithm calculations. The insurance company will anticipate on a large scale, what the cost to insure all of their participants will be, and what they will need to pay their employees. These costs are ultimately passed on to everyone who participates in the plan. In short, while it may not increase your costs individually compared to another person, it may drive up the cost of insurance premiums for all participants as a whole. Disclaimer: This post is intended for educational purposes only and is not a replacement for individual medical advice. If you are interested in obtaining personalized recommendations for your unique situation, click to book online and schedule an appointment fora physical therapy evaluation References (1) The History of Ehlers-Danlos Syndrome Research Is Fascinating (ehlersdanlosnews.com) (2) FDA Approves First Gene Therapies to Treat Patients with Sickle Cell Disease | FDA (3) History | Human Genome Project (ornl.gov)

Gaslighting is a term that has recently come into popularity to describe interactions between people in many different settings including healthcare. To gaslight a person is to interact in a way that leads an individual to question themselves and their own ability to perceive or interpret the reality of a situation. Some common phrases/situations that might suggest you are experiencing medical gaslighting are: "It's all in your head." "You are overreacting." "That isn't important." "You are being too sensitive/emotional." "It's because of your period." "We never talked about that." "That never happened." "I'm the doctor, don't you trust me?" "I think you're confused." "That's not possible." "If you just did what I told you, you should be fine." As a word of caution, those phrases do not necessarily mean you are being gaslit. For example, a physician might tell you that the arthritis the x-ray in your neck shows isn't a big deal, and that may be an honest opinion. Studies have shown that 85-90% of people over the age of 60 have arthritis in their neck, and the vast majority of them don't have constant neck pain. (1, 2) The x-ray your physician received may in fact include a report from the radiologist stating that you have mild arthritis in your neck that is consistent with normal age-related changes. That physician should however, then acknowledge that you are having neck pain, and offer you other testing or alternative treatment options as solutions. We have to be careful to not apply the term of gaslighting to every doctor whose opinion we disagree with. If they have data to support their opinions, they are entitled to have a professional opinion that is different than yours, and may even be different from the opinion of another doctor. If you do feel that you are being gaslit by a doctor, just changing providers may or may not help you. The next doctor may behave the same way, and there are some inherent dangers to always changing providers to find someone who agrees with you. In hopes of helping patients, and encouraging providers that gaslight to learn from their mistakes, here are some do's and don'ts, as well as some approaches to manage it that are grey areas where you should proceed with caution. Things that do not help: Displaying emotional frustration. While you may be entitled to it, if a doctor already thinks you are over-reacting, this will only reaffirm their belief. Yelling or speaking to the provider (or the office staff) disrespectfully. This isn't a sign of a mature person, making a reasonable request. It communicates desperation and disrespect. You are better off improving your argument than raising your voice. As a side note, this applies to office staff too. If you are rude to them, they are less likely to help you. Most office staff tell the physician how they are treated by you. Asking to see another doctor in the practice/health system. These doctors share notes, and they work together. They are unlikely to disagree with each other significantly. While some doctors do make an effort to work on well rounded teams with other people who think differently than they do, this is rare, and not usually the provider that would gaslight someone in the first place. Most people tend to prefer being around other people who look and think like them. Furthermore, some practices have rules about not getting second opinions within the same practice to prevent doctors from being pitted against one another in the event of a lawsuit. Finding another provider, and never communicating again. If a doctor misdiagnoses you, and you get another opinion that proves helpful, let that provider know. This provides an opportunity for them to grow and learn what they missed in your case. You may help the next person who sees that provider to avoid the negative situation you faced. Leaving bad Google reviews. If you post things on the internet that you did not give the doctor the chance to make amends for first by communicating about it with them and their office directly, they will write you off as having poor communication skills, and being out of touch. If the review is in conflict with your medical record, they could even come after you for defamation. If you are going to leave a bad review, be very thoughtful about what you say. Stick to the facts that you can back up with evidence, and be careful when talking about emotional things to use "I felt" statements about how you felt in response rather than accusatory ones to say "They made me feel ______". Talking about friends with similar conditions. While it's normal to try and come up with answers based on your life experiences and relationships, it doesn't mean much to your doctor. Whether or not you are right, there is a lot of bad information out there, and doctors generally ignore your personal experiences with friends, in favor of data/research, or their clinical experience. (*This does not apply if discussing a family member to whom you are genetically related.) Asking for a medication. While it is normal to want relief from your symptoms, asking for pills inadvertently can get you labeled as "drug seeking", which doesn't help your case. Ask instead if there is anything that can be done to manage your symptoms, or better yet, treat the cause. Let the doctor be the one to suggest medications. Sharing information that would suggest ulterior motives. (i.e. seeking disability, looking to be given time off work, etc.) These are yellow flags for doctors. While most people are not just looking for a free lunch, a few people are, and that ruins it for everyone. Try and communicate what your limitations are, rather than outright asking for accommodations. Try to let the doctor be the one to suggest it. If you have to bring it up, it's better to ask for it on a short term basis. This communicates that you are hopeful to go back to your responsibilities and hope the doctor will be able to help you manage your symptoms so that you can do so. Things that may or may not help: Talking about things you read online. Facebook support groups, and internet forums of patients aren't seen as reputable sources of information by providers. That being said, if you bring in a research article from free online databases like PubMed about a condition and highlight the portions you think apply, it is viewed differently. It may be better received by your doctor. Consider either bringing 2 copies, or submitting it to your provider electronically so that it can be added into your chart. That gives you proof that it was discussed with them. Confronting the provider on the financial benefit they gain from referring to in-house specialists rather than the person best for your care. Most hospitals pressure their doctors to refer to their own specialists instead of outside providers. You might succeed in making the provider feel bad about it if you confront them on the fact that while this is legal, it's unethical, but it ultimately is unlikely to make them treat you differently. They are more likely to become defensive, or label you as a conspiracy theorist for thinking that the hospital system is out to prevent you from getting the best care. Even for doctors who are bothered by this, many feel helpless to change their situation and have just accepted it as something they can't control. Insisting on seeing the higher education level provider (i.e. the physician instead of the physician's assistant or nurse practitioner). This is sometimes appropriate if your case truly is that complicated, but proceed with caution here. If the doctor highly values their assisting staff, they can see this request as disrespectful to the quality of the other staff members, and feel like you are unnecessarily taking up their time. Most doctors would prefer that they are the person who decides which patients need to see them for clinical reasons. In fairness, as a patient, you don't (and aren't allowed) to know the situations of the other patients who also need their time. Demanding to see the highest educated provider can inadvertently communicate a lack of trust in the provider to decide what level of care you need and be seen as disrespectful. You may also want to consider that you are more likely to get a longer, or a sooner appointment with the assisting staff, and they are sometimes more people-oriented. Individuals who choose to go to school to be a healthcare provider that works under another provider are more likely to be humble, and less likely to insist on believing that their way is the high way. This can be an advantage if you and your doctor aren't in agreement about your case. Requesting a copy of your medical records. This can make some doctors nervous that you are going to sue them, but it may also let them know that you are paying attention to their behaviors which might prompt change. Doctors are sometimes overwhelmed with their workload and their documentation; this may make them pay closer attention to yours. Asking permission to voice record your visit. Most doctors will say no, or deflect and tell you that they have to consult a supervisor on if this is even allowed. Different states may have different laws on who can be recorded and when. Ask the provider to reflect back to you what you have told them. This is time consuming for them, and may feel inefficient to the provider who is on a tight schedule. It does, however, ensure that you know if they are understanding what you said, and if they are listening. It also gives you a chance to correct misunderstandings. Providers are encouraged to use reflective listening with patients when they are in school, but in a real clinic situation, time limitations can make this difficult. Things that do help: Being kind, and calm. Writing out your case clearly. Bring a paper copy to your appointment for your reference to stay on track. Leave a copy with the office staff and request it be added to your chart as a record of what you discussed. Reasoning with the provider regarding their dismissal of your symptoms Acknowledging that you do not expect the provider to have all the answers. Doctors and medicine are not all-knowing and have not discovered everything about how the human body works. Sometimes gaslighting occurs out of a provider having a hard time admitting that they don't know the answer. Putting a complaint in writing to the individual first, not the office. If they are unresponsive to your concerns, escalating the complaint to the office/hospital is appropriate. Offer to pay for an extended appointment time in cash. The office likely won't (and can't) accept the offer, but it communicates that you are serious and your health is valuable to you. If the office accepts insurance, they can't charge you more than your insurance negotiated fee. Talking about a family member who received a diagnosis for similar symptoms. If you have a biological relative with the same condition, the genetic relation can increase the likelihood of you having the same disorder (if it is a genetically linked condition), and will make it more likely your doctor will order testing for you. Bring someone with you to your appointment. It can be good for a provider to know that they are being watched, and someone else will testify to what they say. It is helpful if the person you bring spends a lot of time with you and can back up your story/symptoms. Finding a provider who will listen to you, and advocate for you with other providers. Some doctors value and are more open to the opinion of other providers than the opinion of a patient. It may help to take a step back and understand the situation from both a provider's point of view, and a patient's point of view. Understanding both sides of the situation can help improve communication. The Providers: Generally care about their patients. Usually believe that they are the expert, and likely know more than the patient on the subject. They spend a long time in school, and dedicate their lives to seeing patients everyday which gives them experience their patients lack. Are usually under constant pressure to have all the answers. Were typically high achieving students, and are used to being right about most things. Due to spending significant time in school and on their career, they can begin to hold their career as part of their identity. Failing to have an answer for a patient can become a reflection of personal failure not just a professional failure. Are expected to explain complex medical concepts quickly, in a way that patients understand. Are surrounded by patients with medical conditions which may be more or less severe than the patient they are seeing. This can desensitize them to what they perceive as comparatively more minor conditions. Are usually under financial pressure to produce answers quickly and move on to the next patient. Are usually under significant business and financial pressures to only refer within certain networks of specialists (i.e. within their own hospital system). Are usually afraid of and trying to avoid litigation at all costs. The Patients: Are generally honest in seeking care/services. Are coming to a doctor seeking advice and answers, but first want to be listened to. May or may not have experienced or known others with more severe medical conditions than what they are experiencing. Therefore, their condition can seem like a really big deal to them. May be in pain, sleep deprived, or otherwise physically impaired/uncomfortable May have anxiety associated with not knowing the severity of the condition and what is happening to their body, or about the condition being incurable. May be depressed due to inability to do their usual daily activities. May be under financial pressure to get answers and treatment. This is true of anyone paying doctors bills, but especially if the condition limits the patient from working. May feel socially isolated by their condition either limiting their ability to be with friends and family, or because their social support system doesn't believe in their symptoms. The intent of this article is to improve understanding and communication between patients and providers. It is not intended to replace individual medical advice from a licensed provider. If you are seeking personalized medical advice, please contact our office to schedule an appointment with a licensed medical provider.

As the saying goes, "All roads lead to Rome." In the human body, all nerves lead to the brain. Nerves are the little electrical wires throughout our bodies that communicate information between our body and our brain. It's fairly similar to a highway system. Nerves are like a complex network of highways on which electrical impulses of information travel like cars to and from the brain and various tissues in our bodies. This happens at a lightning fast pace, because the impulses are electrically transmitted. Most of the time, our bodies are faster at communicating information than our cars are at driving us home. There are all kinds of cars that travel in our nervous system with different kinds of messages. Nerves communicate information about light touch, deep pressure, temperature, vibration, body position in space, and whether something is sharp or dull. They also send messages telling our muscles how and when to move. Nerves even transmit information regarding our emotions, taste, sound, smells, and visual images. In short, our nerves are busy places. The central command center of our nervous systems is the brain. Think of it like one big city, where important things happen. Certain parts of the city have different functions; there are buildings meant for processing emotions, and controlling the movement of our hands. There are centers for language, for visual imagery, and for regulating when we're hungry. Our brains have the difficult task of keeping everything in our bodies running, day and night. They are doing several things to keep us alive, like regulating our heart rate and reminding us to breathe, that we don't think about much. Simultaneously, they also help control the balance and position of our bodies so we don't fall over, process the sounds of the person talking to us, and what facial expressions we see them making. This involves doing a lot of prioritizing. While our brains are incredible organs and can do a multitude of things, they do have their limits. Our brains can only do so many things at one time. They have to decide on what are the most important things to raise to the level of our conscious thoughts. For example, your brain knows and receives information about your legs touching your chair constantly, but it chooses to ignore that information to let you focus on the words you are reading. You most likely weren't thinking about your legs touching the chair until you read about it. Our nervous systems can experience traffic jams, just like cities and highways. Let's say that a large amount of information floods the system all at once, like during a car accident. When in a car accident, there are loud sounds, emotional anxiety and/or anger, and forceful movements to your body. It's also worth considering that immediately before the accident, your nervous system was probably pretty busy. Driving requires us to make a lot of decisions and process a lot of information. Your nervous system was already thinking about directions, watching what different cars were doing, checking the speed of the vehicle, and perhaps listening to the radio. This is a perfect recipe for a nervous system overload. When too much information floods the system all at once, a traffic jam floods your nerves. This can cause a freezing response in your processing. That's why people are "in shock" after a car accident. They may not realize an injury occurred for several hours because the brain can't process all that information at once. Traffic jams typically work themselves out eventually, but it can happen a variety of ways. Let's assume first that our car decides to stay on the same path and go through the traffic jam. Sometimes we get stuck in stop and go traffic. This could mean that when you try and tell your muscles what to do, the movement is shaky because the signals aren't getting through smoothly. Or, maybe the traffic was moving smoothly, but slowly. In this case, when you try and tell your muscles to move, your leg might feel heavy, like it's taking more effort to move it than it should because the signals are getting through slower than normal. Other times, the traffic jam reaches our brains all at once. Our brains may just throw their hands up in the air and say, "I can't process all this!" When that happens, sometimes your brain chooses to process everything as pain. Pain has a very important job in the body, to tell us about danger. Our brains don't want to miss pain, so they sometimes choose to process information as pain when they are overwhelmed. This can be part of why people perceive something as painful that normally wouldn't be. Think about a person with a migraine who has to lay in a quiet dark room because ordinary lights and sounds are painful for them. In some situations, there is no way around the traffic jam, and so things start to back up. The most common example of this is the person who has lower back pain that radiates down into their leg. The information has such a hard time getting through, that the traffic backs up down the chain and the brain begins to believe that the pain is in a larger area because the traffic is backed up. In another scenario, perhaps our car decides it's better to take a detour and use the side streets. In this instance, pain can spread. Pain that started in your shoulder may creep up into your neck and give you a headache while your nervous system is trying to find a way around the blockage to get the signals to your brain. While the analogy of traffic and highways isn't perfect, it can help us to understand why pain isn't always coming from the place we think it is. Our brain's ability to process pain and understand where signals are coming from is a complex process. For more on this, see Invisible Illness: Why Can't My Doctor See My Pain? This post is intended for educational purposes only and is not intended to replace individual medical advice. If you are interested in scheduling a personal consultation with a doctor of physical therapy, call or select the Book Online option.

The first step to reprogramming a sensitive pain alarm is understanding how it works, and why we have pain in the first place. Pain is your body's alert system, it's a protect-o-meter if you will, to try and keep you safe. It is supposed to tell you about danger and more specifically about injury. Some of us with chronic pain just have bodies that are a little better at protecting us than everyone elses'. While this is a great thing if you are in a war zone where heightened senses can help keep you alive, it can be very inconvenient in civilian life. Once we determine that the pain we are feeling is a "hurt pain", not a "harm pain", we can begin to set about reprograming the alarm. If you aren't sure what hurt and harm pains are, see Hurt vs Harm & Car Alarms: Interpreting Chronic Pain to understand why pain signals are more complicated than just the generic term "pain". In order to reprogram the pain alarm, we are going to take advantage of the fact that pain is processed in our brains. This is a huge advantage for us because the brain has the ability to adapt and change based on what we use it for. Our brains work on a "use it or lose it" basis. There are plenty of things that you might have learned in high school, that you don't (or won't) remember in your 30s. For example, if you take a foreign language in school, but don't regularly use it after you graduate, you are not likely to remember very much of that language a couple of years later. For people with persistent pain, you are using your brain to process pain frequently, if not constantly. Not only is that exhausting, and prevents your brain from accomplishing other tasks, but it also reinforces the problem. If we use our brains to process pain all the time, they get really good at processing pain. In fact, research shows that our brains will start to use spaces that are meant to perform other functions to help us process pain instead. (1) This is why for many people with persistent pain, things like remembering names, directions, or where they parked their car become very difficult. What used to be simple tasks like finding the right word to say or calculating a tip on a receipt can become challenging. Even emotional processing can be impacted because the brain is using that space to process pain. A person with chronic pain may find they get easily frustrated and snap at their family because their brains are overwhelmed by the added stress of processing pain with the usual noise of the TV, the kids asking questions, and trying to cook dinner at the same time. So how can we start to take those spaces back? By only letting our brains process and focus on pain when they should be. If a pain is harming you, it's important to listen to your body and not continue doing an activity that is damaging. You cannot think your way out of having pain entirely. The pain is not just "all in your head". If you put your hand on a hot stove, leaving it there is not going to make it hurt less. On the contrary, the longer you leave it there, the more it will hurt and the worse the burn will get. The phrase "no pain no gain" is not always true. Some people with chronic pain who believe in just pushing through the pain become "over-doers" and it can actually make their condition worse. (See Harm Pains: Why Respecting Them Matters) Hurt pains, on the other hand are very real. You feel them, but they aren't actually telling you about tissue damage or injury to the body. As explained in the car alarm analogy, they are a "false alarm" or a software problem rather than a hardware problem. In this instance, it's important not to focus on the pain. When we focus on pain, and pay attention to it, we are essentially telling our bodies that we agree this is worthy of our attention. That reinforces the neural connections in our brains. The brain therefore believes that it is processing things correctly. In reality, we want to use these pains as an opportunity to teach our brain that it is not processing the signals correctly. We want to teach our brains new patterns by recognizing, reframing, and redirecting in hopes of rewiring our brains. To do that, we have to first recognize and acknowledge the signal we are receiving to make sure we don't miss a "harm" pain. We have to interact with that signal and take time to interpret if it is indicative of a pain that is "hurting" or "harming" us. We can't make good decisions about what to do until we can identify hurt vs. harm pains. Second, once we determine the pain is hurting us and not harming us, we need to reframe the pain for our brains and focus on the facts. This means thinking to ourselves or perhaps even verbalizing out loud that this is a "hurt pain" and we are not in any real danger. We don't need medical attention for an injury. No new tissue damage or injury has occurred. In this phase, we reassure our brains that it's safe to trust us and our interpretation of the events. Engaging the logical portion of our brains here can be helpful. Pain instantly triggers some degree of emotional reaction. That can be as simple as "I don't like it", which is a normal and healthy emotional response to pain. However, it is also normal that pain can trigger fear and anxiety regarding the severity of the danger, or feelings of helplessness in our ability to resolve the problem. These stronger emotions can make it difficult for us to reframe the pain signal as a "hurt" rather than a "harm" pain. They can shake our confidence that we are processing things correctly. Our brain believes that surely, there must be something seriously wrong, because that is what pain is supposed to mean. Working through a decision tree and establishing a process for deciding if something is hurting you or harming you can help manage this reaction by engaging other more logical parts of your brain. (Coming Soon, see Hurt vs. Harm: How Do I Know The Difference?). If this process is still challenging for you, work with a physical therapist who can help screen for and rule out any possible orthopedic causes for your pain to give you more peace of mind. Third, we redirect our brains to something else. This not only helps break the neural connections that we don't want, it helps form new ones. To help redirect us, we engage in what's called distraction techniques. Every parent of small children knows this well. When your toddler asks for candy, just saying "no you can't have that" may result in a meltdown. Instead, giving your child choices of alternatives has a better likelihood of a favorable outcome. Perhaps you offer your child that they can have a piece of fruit or some crackers instead. Maybe other food isn't the best choice and you engage with them by picking up a toy to play with, or suggesting they play hide and seek. While this looks different for children and adults, the principle is the same. Distraction techniques take many forms. For some suggestions on how to get distracted, see Making Distraction Work For You. It's important to recognize that this process of reprogramming the pain alarm won't cure your chronic pain overnight. Our bodies have been learning how to process pain since we were small children. Some of us learned good things, and some not so good things. We all experience a variety of people (parents, teachers, coaches, etc.) teaching us how to process pain a variety of ways. The anxious helicopter parent who hovers over every ache and pain, teaches you to do the same. On the opposite end of the spectrum, some people experience being told they are fine when they really are injured. Still others experience abuse at the hands of a person they are supposed to be able to trust, or neglect where there is no attention given to them at all when they are trying to learn to process pain. While you can use this strategy of recognize, reframe, and redirect to rewire/reprogram your brain at any age, you should be aware that the neural pathways are more well worn into the current patterns the longer you've been experiencing chronic pain. That being said, it can still make a difference over time. It also should make us recognize the importance of recognizing and treating chronic pain in children so that they can grow up to be healthier adults with less pain. (See Helping Kids With Chronic Pain Grow Into Successful Adults) As always, this article is intended for educational purposes and is not a replacement for individualized medical advice from a licensed healthcare provider. If you are interested in seeking personalized recommendations for managing your chronic pain or other conditions with physical therapy, call or Book Online to schedule your consultation. References: (1) Chronic Pain: Structural and Functional Changes in Brain Structures Associated with Negative Affective States by Seoyon Yang, and Min Cheol Chang.

When you have Ehlers Danlos Syndrome (EDS) or a Hypermobility Spectrum Disorder (HSD), it can often feel like your joints are out of place. For years, chiropractors and physical therapists have been doing adjustments, (also called joint mobilizations, or manipulations) to help reposition joints and restore alignment. But when it comes to Ehlers Danlos and adjustments, is it the best treatment option available? At first glance, this sounds like a good idea. Some people with EDS or HSD report feeling better when their joints have been realigned by a healthcare provider, at least temporarily. Unfortunately, this can be expensive to maintain because the joints tend to slip out of alignment again and again. To really come up with a good long-term solution for a problem, we first have to be able to identify what the problem is. People with EDS and HSD have loose connective tissues. While that can affect them in many ways, ligaments are a connective tissue that specifically help to stabilize joints. There are two main systems that stabilize our joints. The first is our ligaments. Ligaments work a lot like rubber bands. If you put tension on the band, it will want to pull you back to a resting position where there is less tension. This happens automatically, without any need for our brains to tell our ligaments what to do. If the rubber band is loose and stretched out however, it won't hold things together as well. It is not something you can voluntarily control, it's simply a matter of genetics and the make up of the collagen fibers in the ligament tissue. The second system is our muscles. Under the direction of commands from our brains, muscles control our movements voluntarily. They can contract and relax to guide the position of our bodies. It's good news that we have multiple systems that help hold our joints stable. That means that if one system isn't working correctly, our bodies have a back up built in. While an external adjustment performed by a skilled healthcare provider is one option to help restore alignment of joints, it doesn't ensure that the position of that joint will be maintained in a healthy place. For that to happen, the muscles need to do their job well to hold the joint in position when the ligaments aren't able to do their part. If you are seeing a healthcare provider for adjustments, they should also be teaching you how to try and use your muscles to keep your joints in good posture. If a provider isn't doing so, it may be simply because they don't know better. Some educational programs instruct providers only on how to manually reposition joints with their hands or other tools. Some providers are well intentioned and believe themselves to be helping their patients by providing a service to realign their joints on a regular, ongoing basis. Most healthcare providers do go into their profession to help their patients and are well intentioned. Others, however, may not have sincere/good motives. We must recognize the sad reality that the livelihood of the healthcare provider is dependent on other people being sick and injured. This is a subtle, but inherent conflict of interest in the nature of their work. Healthcare providers make less money on patients that get better and stay better. They generate more income from patients who feel better temporarily, but require ongoing services. Healthcare providers are told to do their best to "put their patients first". Part of that means that our goal should always be to work ourselves out of a job. If there is a way for a provider to save a patient time and money by teaching them to manage a condition themselves, we should always attempt to do so (provided the patient can do so safely). Teaching our muscles to hold our joints stable can be challenging. In fact, for many people with EDS and HSD, they experience chronic muscular pain due to the overuse of muscles, trying to maintain the position of their joints. Some muscles are built for endurance and maintaining posture, but not all muscles are meant to work all the time. A healthcare provider who specializes in muscular function and patients with EDS is often needed to help patients learn how to distribute the workload appropriately amongst their different muscles to alleviate their soreness. Otherwise, some muscles tend to dominate in trying to provide stability that shouldn't be doing all the work. Those muscles end up overworked and sore. Meanwhile, there are other muscles that are weak and don't help out like they should. Some patients have had less success in physical therapy in the past than they had hoped for. It is worth acknowledging that not all physical therapists are well trained in managing EDS and HSD. This is where, truly understanding the problem becomes important prior to rushing in to offer solutions. The real secret lies in understanding the ligaments. Ligaments do more than just stabilize the joints. They also house a special type of nerve cells called proprioceptors. Proprioception is your body's ability to sense its position in space. If you sit with your eyes closed, and move your finger up and down, a healthy body can sense whether your finger is pointing up or down at a given time, even when you can't see your finger. The ability to sense where your joint is, is crucial for you to be able to respond at the right time, with the right muscles to hold it stable. In short, if your body doesn't understand the problem, it can't respond accordingly. This can lead to problems with joints dislocating, or subluxating (almost dislocating, but slipping back into place on it's own). It also contributes to chronic muscle soreness from overuse as the body tries to stabilize a joint inefficiently or with the wrong muscles. For more on how to fine tune your proprioceptive sensing system, see Perfecting Proprioception (Coming soon). If you'd like to work with a physical therapist who specializes in patients with EDS and HSD to discuss your specific case, contact our office or click Book Online to request an appointment. While we offer telehealth services, if you are not local to our area, and prefer an in-person visit we suggest consulting the EDS Society practitioner directory as a resource for finding a provider in your area. Please remember that this article is intended for educational purposes and is not a replacement for individual medical advice from a licensed healthcare provider.

While jaw problems come in all shapes and sizes, hypermobility issues are one of the most common. The jaw, also called the temporomandibular joint, or the TMJ, is a complex joint. It is unique compared to the other joints in our body because the jaw bone (the mandible) connects between the right and the left sides of our body. That means that what happens on one side, inevitably effects the other. Regardless of whether the jaw is stiff on one side (hypomobility) or loose on one side (hypermobility), the other side will also pay the price. Focusing on hypermobility, if the jaw is loose on one or both sides, it creates some problems for us. People will often report popping, clicking, pain, locking of the jaw, and muscle tension problems such as clenching or grinding their teeth. In some cases, it can even lead to ear ringing. (See Can TMJ Treatment Cure My Tinnitus? ) In this post we'll discuss an overview of: How Hypermobility Effects The Jaw Some basics of Proprioceptive Exercises for the TMJ TMJ Hypermobility and Ehlers Danlos Syndrome How Hypermobility Effects The Jaw So how can all that happen from a few loose ligaments in the jaw? Many of the nerves that help our body to sense position are located in the ligaments. If the ligaments are loose, the instability presents our bodies with a choice. Either our muscles have to work harder to try and stabilize the joint, or the joint will move in an uncoordinated way. If the muscles are working overtime, they can develop painful trigger points. Trigger points occur when the tissue swells and there is a build up of chemical irritants like lactic acid. Most muscles are not designed to work all the time. Overuse of some muscles in the jaw that are close to the ear can also contribute to ear ringing. In fact, most people who experience clicking in their jaw can feel the pop inside their ear if they put their finger into the ear canal while opening and closing their mouth. When the joint moves in an uncoordinated way, we run the risk of compressing or pulling on the nearby nerves as the joint moves. There is also a disc in the joint that can catch, resulting in a clicking sound. If the joint is mobile enough, it may slip out of place and then pop back in. Formally, doctors call this a subluxation. If the joint is even more mobile, in extreme cases, the joint can dislocate entirely. Most true dislocations of the jaw happen as a result of trauma to the face. This is different than when a person experiences lock jaw. Most cases of lock jaw occur when the position of the jaw is shifted, preventing the disc from sliding smoothly between the joint surfaces. If the disc gets stuck in the middle, the jaw can't open and close normally. As you can see, the jaw is a complex joint, and there are a variety of different problems that can occur. If you're concerned your jaw may be hypermobile, it's best to work with a physical therapist who specializes in treating TMJ problems. Unfortunately, there is not a national directory at this time to help you find PTs who have an interest in treating patients with jaw problems. It is also unfortunate that many call center employees that are trained to try and improve patient confidence in the company's services will schedule the patient an appointment without really knowing if the therapist specializes in TMJ problems or not. Even some therapists with minimal experience treating the TMJ will claim to be able to treat jaw problems simply because they want your business. For tips on how to find a competent PT, check out Choosing a PT for TMD . Proprioceptive Exercises After your PT has ruled out structural problems, if they determine that hypermobility is the issue, they may talk to you about improving the coordination of your jaw. Proprioception is a medical term for the body's ability to sense it's position in space. For example, if you sit with your eyes closed and raise your hand in the air, you can feel where your hand is without having to look at it. That position sense is called proprioception. This is important if you want to help your body control the movement of the jaw with your muscles. The goal is to teach your muscles to work together to prevent subluxations, reduce poor coordination of movement that affects the disc (leading to popping/clicking), and reduce irritation of the nerves that can occur with uncoordinated movements. Basic proprioceptive jaw exercises can be done at home without much equipment. The most basic movement our jaw performs is to open and close. When a PT watches a patient perform this movement, they are looking to see if the person opens their mouth straight up and down. When people with hypermobility open their mouth, it often wobbles slightly to the right or left without them realizing it. If you aren't trained to see this, it's easy to miss. It may help to perform the movement slowly while watching in the mirror or utilize a slow-motion video recording to watch the movement. It's important though that the patient can see the abnormal movement. It's difficult to correct something that you can't recognize occurring. Once you are aware of the atypical movement pattern, you can begin working to correct it. When trying to build new movement habits, it's best to start slow. When moving slowly, the brain has more time to think and react to feedback and make adjustments. The goal is to perform intentional and controlled movements. Typically it's best to start with a lot of feedback to make sure that you are doing the movement correctly. We can check ourselves by using visual feedback from our eyes in a mirror, tactile feedback from our hands touching our face, and auditory feedback from the sounds the TMJ does or doesn't make. Knowing your learning style can be helpful here. It may be easier for you to learn with one form of feedback or another. Likewise, as you start to progress to doing the movements without the added feedback, some forms may be harder to give up than others. If you aren't a visual person, sometimes tactile feedback is more helpful. The same movement of opening and closing the mouth can be performed with your finger held to your lips as though you are saying "Shhh!" and telling someone to be quiet or keep a secret. When opening and closing the mouth in this position, the feeling of your lips gliding up and down against your finger can give you feedback about if you are moving in a straight line. The hands and the lips have more sensory nerve endings than the jaw itself. Taking time to specifically focus on jaw movement is often necessary despite the fact we move and use our jaw to eat and talk every day. When we are using the jaw to eat, we are often more focused on the taste of what we're eating than how our mouth is moving. When using the jaw to talk, we are more focused on what we are saying than how the jaw is moving. Distraction frequently keeps us from learning to move our jaws in a smooth and coordinated way. Some patients find that if they can learn to coordinate the movement of their jaw well while opening and closing, their pain and clicking/popping improve significantly. There are several proprioceptive exercises that a skilled PT can teach you to coordinate your jaw movement better for your unique needs. There are also a variety of muscle energy techniques, joint mobilizations, and lifestyle habit changes that can improve jaw problems. TMJ Hypermobility and Ehlers Danlos Syndrome When the TMJ isn't the only part of the body that is hypermobile, there is an added layer of complexity to address. For people with Ehlers Danlos Syndrome (EDS), they often experience hypermobility in the neck, ribs, and shoulders which can all contribute to TMJ problems. The jaw does not exist in a vacuum, it is attached to a whole person. The muscles on the front and sides of the neck attach to the jaw. Some of those muscles also attach to the ribs, and shoulders on the other end. Moving past the muscular component, the jaw and the neck are structurally related. If you think of the jaw like a swinging door that opens and closes, the upper cervical spine in the neck serves as the door hinges. If there are alignment and instability problems in the neck, it can keep the door from swinging properly. Aside from financial motivation, that is part of why many PTs who don't specialize in jaw problems will still take patients with jaw problems. They are hopeful that treating the neck will improve the jaw problems by association. While this is true if the neck is in fact involved, ideally, it's best to find a therapist who can treat both issues. For a person with EDS, while the neck may be partially to blame, the ligaments in the jaw itself are most likely also loose and will need specific treatment as well. Beyond joint structure, people with some types of Ehlers Danlos Syndrome also experience a high and narrow palate, and dental crowding which can also contribute to problems with the TMJ. In some cases, working with a dentist and/or orthodontist that are accustomed to treating TMJ patients is necessary. It's also important to recognize that the stress of living with complex chronic illness can affect a person mentally, financially, and physically. When under high levels of stress some people begin to clench their teeth subconsciously and will complain of waking with jaw pain from clenching and grinding in their sleep. There are even more challenges to good management of TMJ problems in people with EDS who have other conditions like dysautonomia, and Mast Cell Activation Syndrome (MCAS), which occur more commonly in people with EDS. A physical therapist performing a thorough evaluation will consider all of these factors and more to provide optimal patient care for a person with EDS and TMJ hypermobility problems. This article is for introductory educational purposes only and is not intended as a replacement for individual medical advice. You are encouraged to schedule an evaluation appointment to obtain personalized recommendations from a licensed healthcare provider before starting a new exercise program. Click here to book online if you are interested in scheduling an evaluation with a TMJ specialty therapist.

While there are a few people born with a rare disorder that leaves them unable to feel pain called CIP (Congenital Insensitivity to Pain), most of us have experienced pain throughout our lives. For many people, pain is intermittent, and short lived. For others, pain becomes persistent, and when it lasts longer than 3 months, doctors classify it as chronic pain. For some people, the pain has persisted for so long, that they don't remember what a pain free day feels like. While it can be difficult to acknowledge that pain can actually be a good thing, there is a reason for it. Our bodies need pain to tell us about danger. While having CIP might sound great at first, consider what it would be like to raise a child with this condition. The child might fall down and break a bone, but continue to walk on it because they can't feel it. They may put their hand on a hot stove, and instead of crying out in pain and pulling it away, they may leave their hand there for several minutes, causing extensive burns. As a parent, you would have a hard job in trying to decide when your child needs to go to the doctor. Unless there were visible signs of injury, your child wouldn't let you know that anything is wrong. On the opposite extreme, raising a child who has chronic pain can be challenging too. It is difficult to know when your child is injured and needs to see a doctor. Your child might complain of pain in their knees, but taking them to the doctor can seem fruitless. The doctor may tell you that the x-rays are negative, the MRIs are clean, and your child is simply experiencing "growing pains", or they are "attention seeking" and "whiney" and need to toughen up. As a parent, you can leave feeling like you spent a whole lot of money not to get any answers that help your child to feel better. A small voice in the back of your head asks, "Don't all kids grow? Why does my child hurt, and some other kids don't?" and "Is my child being whiney, or are the doctors actually missing something serious?" (See Raising Kids With Chronic Pain - When To See A Doctor) If this isn't challenging enough as a parent, who is an outside observer, it is even more difficult when the person experiencing the chronic pain is you. Whether you are a child or an adult, being able to interpret pain responses is difficult. Pain is supposed to tell you about danger, so your body takes it seriously. Intense pain can sometimes make it hard to think straight, or to focus on anything else because your brain inherently sees it as a top priority. In a typical healthy body, pain equals danger. It is a warning signal that something harmful has happened that requires your attention. Pain is kind of like the body's internal alarm system to tell you when an injury has occurred. In a body that experiences chronic pain however, the alarm system can sometimes become dysfunctional. A car alarm is supposed to tell you when a burglar is breaking into your car. Sometimes however, car alarms are too sensitive, and also go off when the thunder booms. If you were to call the police for the car alarm that sounded due to the thunder boom, the police would arrive and find your car sitting undisturbed with no burglars in sight. Similar to a doctor, they may fine you for their time even when they come out to find nothing wrong. Chronic pain patients live with alarm systems that sound a warning for burglars and for thunder booms. The problem is, the car only has one sound. A car doesn't have a "This is my real alarm for a burglar" sound and "This is my false alarm for thunder" sound. It's important to recognize that whether the alarm sounds for the burglar, or the thunder boom, the sound is just as real. Likewise, the pain that chronic pain patients experience is very real, even if their doctors cannot see it on their tests. (See, The Invisible Illness: Why can't my doctor see my pain?). It can be hard to interpret when something that hurts is actually harming you (Hurt Vs. Harm). While the pain is real, your body's alarm system may not be telling you what it is supposed to tell you. Some patients tell their doctor that they feel like when they sit in a chair they have the stabbing pain of a knife in their back, but in a literal sense, there is not a knife sticking out of their back. This patient is experiencing pain that hurts, but may not actually be harming them. Sitting in a chair isn't a dangerous activity in and of itself for most people. Therefore, further evaluation of the patient's back is needed to determine why this is occurring. Psychologists call this "Hurt Vs. Harm". Pain psychologists and physical therapists work with patients as part of a team to help their brains distinguish between the two. While psychologists are experts in the mind, physical therapists have a unique opportunity to work with patients on Hurt Vs. Harm in real time. As your body performs a movement during therapy and you experience a pain sensation, the therapist is there to help assess if there is any orthopedic reason that the movement would have damaged any of your tissues and provoked a pain response. If the pain you experienced is not consistent with some kind of tissue damage, it may be a misfiring of your alarm system. This is an important skill for people with chronic pain to learn because it helps you to know when to go to the doctor. There is a delicate balance to strike. You don't want to go to the doctor and waste your energy, time, and money on something that was a hurt pain, to be told they can't help you. On the other hand, still knowing when to go to the doctor for something that is legitimately harming you and may be dangerous to your health can save your life. For example, just because a patient with chronic pain in their left arm has pain in their arm every day, doesn't mean that they can't also have a heart attack which makes their left arm hurt worse. In this case, knowing the difference between the chronic pain in the left arm that hurts, and the harm pain of a heart attack can save a person's life. Beyond protecting your safety and well being, learning about Hurt Vs. Harm can actually help you to re-program your body's alarm system and help you calibrate how your body perceives pain responses so that you can actually have less pain over time. (See Hurt Vs. Harm: Re-programming The Pain Alarm) The information above is intended for educational purposes and is not a replacement for individual medical advice. If you are interested in a personal evaluation, click on Book Online at the top of your screen to schedule a consultation with a physical therapist to evaluate your case. Additional disclaimer: We acknowledge that there are some individuals who feign pain or injury in order to obtain some type of social, financial, or other gain. The intent of this article is not to comment on this, or the validity of conversion disorder as a medical diagnosis in individual cases. This article is intended to recognize that there are also millions of people with chronic pain that are earnestly seeking to address their pain. These individuals should not be instantly discredited because of an assumption that they are insincere or dishonest in their pain complaints. Due to the complexity of biological, psychological, sociological and spiritual factors that contribute to pain processing, each case should be evaluated individually by qualified medical professionals.

While there is plenty to learn about the nervous system, and doctors spend years in school studying how nerves work, this post will give an overview of pain in our nervous system and how it relates to: Neuroplasticity - our nervous system can learn. Thresholds - how much it takes to make our nervous system respond Nerve Conduction - nerves communicate with electricity Neuroplasticity The nervous system is one of the most complicated systems in the human body. The boss of your nervous system is the brain. This presents a significant challenge for the medical community because brains are unique like fingerprints. Even identical twins have different brains and different fingerprints. While there is definitely a genetic piece to how your brain is formed, the human brain is what neuroscientists call plastic, meaning that it can adapt and change. Plasticity is a good thing because it allows our brains to learn and develop as we grow. It also means, however, that the things that we learn as children matter. While facing adversity in childhood does not guarantee that you will face challenges as an adult, it certainly is correlated with increased risk of developing chronic health conditions. (1, 2) Let's take pain for example, part of how you process pain is actually learned. If you've ever spent time with small children, you may have seen a child fall down and scrape their knee. If this is the first time that has happened to them, when they are very young, they will often look to their parent before they decide what to do. If their mom panics, the child will likely begin to cry and get upset. The child sees the mother's anxiety, and responds accordingly. Similarly, however, if the mother is calm, and reassures the child, "You're ok." with a smile, the child will likely take a deep breath, reorient themselves, and get up to keep playing. The tissue damage the child experienced with the scrape on their knee could be exactly the same in both scenarios, but the way the child learns to respond to it is different. This is what makes understanding pain so complex for healthcare providers. Everyone's body processes pain differently. There are a variety of influences that a child might encounter while they are learning to process pain. For example, many cultures teach boys that it is not ok to cry about pain from a young age. Some religions believe that suffering is a sign of being punished by God, while others see it positively as an experience that will draw a person closer to God. Some children experience the anxious helicopter parent phenomenon, and subsequently learn to be fearful of injury and attentive to every little ache and pain. Perhaps a child has parents, teachers, or coaches who ignore them, mistakenly thinking they are being dramatic, when they in fact have a legitimate injury. This child might learn that they needed to do more to get attention for their injury in the future. Still other children experience neglect, and subsequently might learn not to pay attention to injuries that actually warrant medical attention. Some children encounter abuse at the hands of someone they trust. In fact, almost all of us experience a combination of these scenarios and more, which ultimately come together to form our adult nervous system's pattern for interpreting information and responding to it. No two people share the same nervous system. This is why one size fits all solutions are often unhelpful in managing conditions like persistent pain, and others that affect our nervous system. Thresholds Our nervous systems have what we call a threshold for response. Temperature, pressure, and many other stimulus to our nerves occur on a continuum. If we apply warm water to our skin while washing our hands, it may be a pleasant sensation. There comes a point however, that the water is hot enough that it begins to become painful. If the water is hotter still, it may eventually burn our skin. Similarly, there is a level of pressure on your skin that feels like you are being tickled, which is different than the pressure that feels like a comforting hug, and also different than a person squeezing your neck in a choke hold which becomes uncomfortable and painful. The stimulus, however, is the same in all of those scenarios. The question becomes, how much pressure does your body decide is comforting, as opposed to irritating or threatening? The nerves in your hands and out in your body simply send a message to your brain saying, "something happened". As for what that "something" is, is ultimately up to your brain to decide. Whether it is temperature that your nerves sense, or pressure, your brain has to decide whether that level of stimulus is a good thing or not. We believe this because of what we know about people with spinal cord injuries. If the spinal cord has been damaged and the messages can't pass from the nerves in your feet, up to your brain, you lose feeling in your legs. If you were to sit with your eyes closed and a person smashed your toe with a hammer, it wouldn't hurt because the message can't get to your brain to be interpreted. Likewise, studies suggest that 60-80% of individuals who undergo an amputation, experience pain and other sensations in a body part that is no longer physically present. (3). We would not say that all of those people are making it up. The effect is far too widespread. While the experience of pain is not "all in your head" in the sense that it isn't real, or you are making it up, we do believe that it is predominantly an experience that happens in your brain. While the person who underwent an amputation may have lost part of their limb, they didn't lose the part of their brain that processes information for that limb. Nerve Conduction When our nerves decide that a threshold has been met to send a signal to our brains, lots of things happen quickly. Chemicals change in our bodies that create an electrical current that passes from the end of one nerve to the next, transferring a signal along the pathway to our spinal cord and brain. This works similar to the wiring in your house. Just like the wires in your house have a protective coating around them, your nerves do too. Nerves are coated with a myelin sheath that helps keep the electrical impulse contained so it moves smoothly along the little nerve wires. Unlike the wires in your house however, our nerves are sending more complex information. Our nerves are capable of sensing a variety of different sensations including pressure, temperature, vibration, the position of your body, and whether something is sharp or dull. They also carry messages telling your body to move a muscle. There are special nerves the sense smells, transmit visual information for you to see, sounds for you to hear, and flavors for you to taste. In short, our nerves are busy places. In truth, we don't fully understand how our nerves can differentiate all of that information. Our testing of the nervous system is somewhat limited. It's important to know that when someone has a nerve conduction study, the test is assessing if the information is passing from point A to point B and how fast it gets there. It cannot tell us exactly what kind of information your nerves are sending. This can be frustrating for patients experiencing pain and sensory problems who are told that their nerve conduction testing is normal. For a better understanding of how the variety of sensations are processed in your nervous system, see Nervous System Highways. This post is intended for educational purposes only and is not intended to replace individual medical advice. If you are interested in a personal consultation, call or select the Book Online option. References: 1 Adverse Childhood Experiences: The Protective and Therapeutic Potential of Nature by Anna K Touloumakos and Alexia Barrable 2 CDC Adverse Childhood Experiences 3 Phantom limb pain: A literature review by Amreet Kaur and Yuxi Gaun

Panic attacks are a tricky subject. While they are absolutely a real experience that people have, defining what they are, and why people get them, isn't easy. The situation gets even more complicated when we consider how it works itself out in clinical practice and individual patient experiences for people with POTS and chronic pain. In this article we'll attempt to tackle What is a panic attack? Who should treat panic attacks? The panic-less panic attack (a panic attack without emotional panic) Proposing categories/terms for different kinds of panic attacks Theories on why panic attacks without emotional panic happen. What is a Panic Attack? Panic attacks are typically defined as being sudden intense episodes of fear/anxiety accompanied by severe physical symptoms, in the absence of any real danger. Physical symptoms of panic attacks can include: Rapid breathing Shortness of breath Hyperventilation Tachycardia (fast heart rate) Heart palpitations Chest pain Sweating Chills Nausea Shaking Headache Numbness/tingling of the extremities Dizziness Fainting It bears mentioning, that some individuals are told they are having a panic attack because they experience the physical symptoms, but the emotional distress isn't present. The individual experienced no precipitating episode of fear or anxiety. This arguably does not fit the true definition of a panic attack. See below for a discussion on this alternative version of a panic attack. Who Should Treat Panic Attacks? The variety of symptoms makes panic attacks difficult to manage because no individual specialist manages all of those symptoms. Holistic management requires a team of different healthcare providers to work together. Mental health providers are specialists in the management of the psychological distress of fear and anxiety, but their training to manage the accompanying physical symptoms is often lacking. Medical providers may have training on some of the physical symptoms that pertain to their area of specialty practice, but their training on other specialties, and the psychological component is limited. In the push to advance specialization, the healthcare education system trains providers to excel in one area of medicine. While this is great if you have a problem that lies within one specialty area (and has led to many medical advancements in the last 100 years), it is not ideal for people with conditions that affect multiple systems in the body. The symptoms you can experience during a panic attack are in a wide range of specialties. To cover them all, you'd need a provider that is a cardiologist, pulmonologist, endocrinologist, gastroenterologist, and a neurologist at minimum. And let's not forget, the mental health providers because the key sign that is supposed to be associated with panic attacks is the fear/anxiety. You're unlikely to find one provider that specializes in all of those things. As a result, panic attacks are a problem that don't get a lot of attention. Most medical providers will write them off as "not in my scope of practice" and move on to focus on other patients whose symptoms fit neatly into the box of their specialty. For example, while you may have chest pain, palpitations and a rapid heart rate, the cardiologist might say that the other symptoms like nausea are better treated by a GI specialist, or that it's an emotional problem and you need to see someone who works in mental health to manage your anxiety. The Panic-less Panic Attack To make matters more complicated, some people with POTS or chronic pain experience the physical symptoms of a panic attack, without the emotional panic. They weren't anxious about anything or fearful before the physiologic panic attack symptoms started. They often aren't anxious or fearful during the attack either. If anything, they often become annoyed about having a panic attack when they weren't even upset to begin with. They are then further frustrated when they seek medical attention, to be told they're having a panic attack, even though they didn't feel panic. This can leave them feeling like they aren't being listened to, or worse, that they are being told that their very real, physical symptoms are "all in their head". Categorizing Panic Attacks The Diagnostic Statistical Manual of Mental Disorders (DSM) divides panic attacks into two main categories of "expected panic attacks", where the fear that precipitates the attack is identifiable, and "unexpected panic attacks", where the fear/anxiety precipitating the attack is not clear. In both incidences however, panic/fear is present. To effectively treat panic attacks, it may help to divide them into more categories: Irrational emotional anxiety, with physical symptoms. Rational emotional anxiety, with physical symptoms. Unidentifiable emotional anxiety, with physical symptoms. Physical symptoms, in the absence of emotional anxiety. The first three categories are true to the definition of a panic attack consistent with the DSM. In the first category, a person might have fear about something specific that is not reasonable. The important part, however, is that the fear is present. If fears about irrational, or highly improbably occurrences are present (such as a fear that you will be struck by an asteroid and killed while reading this article, which is statistically highly improbable), then mental health providers are typically the best equipped to manage the panic attacks. While the physical symptoms that follow are real, the best treatments in medicine are aimed at the source of the problem, not the symptoms. The second category is worthy of recognition and differentiation. Some individuals have fear and anxiety, because they have something legitimate to be afraid of. If, for example, you didn't study for an exam that will determine your ability to graduate college, or perhaps you received news that you have a terminal illness and you are unsure what will happen to your young children when you pass away, it would be appropriate and rational to have anxiety about your future. Here again, psychological stressors are the primary symptom generator of the physical symptoms. Therefore, the best treatments are most likely going to be lifestyle management to reduce the stressors if possible (such as proactively studying for your exam), and intervention from a mental health provider to help you cope with the psychological stress, if the circumstances cannot be altered (a terminal illness diagnosis). The third category is where things get tricky. Clinically, this category can serve as a catch all for otherwise unexplained panic attacks. The individual experiences fear and anxiety, seemingly about nothing at all. If the fear is non-specific, then working with a mental health provider to determine if there are repressed fears, or a generalized anxiety disorder is at play would be appropriate. The fourth category, however, is not widely acknowledged in medical research. The panic attack without panic. These individuals are not psychologically stressed, and therefore we must consider the possibility that something else is causing their symptoms. While it may look like a panic attack, there is no emotional panic. In a rushed healthcare system where doctors are pressed for time, they don't often have the ability to stop and question if there may actually be a physiologic trigger for the "panic attack". It is easier to simply make the diagnosis, claim it is outside their scope of practice, and move on to their next patient. Arguably, this isn't intentional insensitivity on the part of the healthcare provider, it is what they have been trained to do. They are taught to refer out to other specialists to manage things that are not within their specialty. In this case, they refer to mental health providers to manage panic attacks and believe that is the best thing they can do to help their patients. Theories For The Panic-less Attack The key to understanding the phenomenon of the panic-less panic attack (or what may be best called, a physiologic panic attack) however, may lie in a better understanding of patients with Postural Orthostatic Tachycardia Syndrome (POTS). In POTS, the body has a hard time getting blood where it needs to go efficiently. As a result patients can experience a variety of symptoms such as dizziness, fainting, and rapid heart beat as the body frantically tries to move the blood to tissues that need it. While that is not an exhaustive list of POTS symptoms, it's enough to draw some basic parallels. The tricky part about POTS is that this all happens on the inside of the body. It's an invisible process to the naked eye. If we were to give a more physical representation, consider for a moment that someone was holding your head underwater. If you are unable to breathe, your body would go into a state of emotional and physical panic in response to the threat of being unable to obtain the oxygen that your body needs to survive. While this analogy is a dramatic case, living with POTS may not be so different. It just happens on a slower timeline. Perhaps your head is being held under water periodically; not enough to kill you, but often enough that you aren't quite getting as much oxygen as you need. If the body is unable to circulate blood to the tissues effectively, then a chronic state of somewhat decreased oxygenation may set in. The body has enough oxygen to live, but not enough to thrive. A person may feel fatigued, and like they have decreased energy. They could feel lightheaded if their brain isn't getting enough oxygen. They may develop exercise intolerance. Their brain might also feel foggy and sluggish because it doesn't have enough nutrients to work at optimal speed. All of these symptoms are common in people with POTS. Perhaps the panic-less panic attack is better described as a physiologic panic attack. The body enters a state of panic due to a prolonged physiological distress, rather than an emotional distress. A second potential cause can be best understood through the lens of chronic pain. Pain serves as the body's alarm system; it's job is to tell you about danger. (See Hurt vs. Harm & Car Alarms: Interpreting Chronic Pain) For some however, the alarm system malfunctions. It begins to either sound the alarm, disproportionately to the level of danger present, or even in the absence of any observable tissue damage that doctors can see. That may mean that we simply lack the medical advancement to identify the cause of the symptoms. It may also mean that there is a problem in our nervous systems' ability to sense and interpret information correctly (a software problem, rather than a hardware problem). Regardless of if the tissue damage is visible, the effects of the alarm are real. If someone pulls the fire alarm in a building, it doesn't really matter if there is a fire or not. When people hear the sound, they will move towards the exits accordingly, and fire trucks will arrive on the scene. Your body is no different. If it believes that it is in danger, it will begin responding accordingly. If you are unable to resolve that danger because doctors are unsure how to treat the problem, your body can become frustrated. Just like a baby will initially cry softly, and escalate in volume until its parent responds, the body may decide it needs to do more to get your attention. This might also explain why symptoms escalate into a "panic attack" without any perceivable emotional panic. The body may simply be trying to get more attention in hopes of getting its needs met. In order to effectively unravel these mysteries, it may be time that the mental health community and the medical community come together to search for the true causes of panic attacks, and to what extent they are emotionally and/or physiologically mediated. In closing, it's important to remember that these are theories, not facts. These are plausible suggestions for why a panic attack might occur without emotional panic, but there is not at present any research available to confirm that these theories are true. More study is needed, but for that to occur, there must first be recognition in the medical community that what may best be termed a "panic-less attack" or a "physiologic panic attack" is in fact a legitimate medical condition. Disclaimers: This article is intended for educational purposes and is not intended to serve as or replace individual medical advice from a healthcare provider. If you are seeking personalized medical advice, please contact our office to schedule an appointment with a licensed medical provider.

There are a lot of things that kids need to help them grow up into thriving adults. There are plenty of books out there on healthy diets, developmental child psychology, and strategies to help your kids do well in school. There is very little information available on how to help kids who have an invisible chronic illness like pain, navigate life and the healthcare system. Here are a few tips for helping kids with pain reach their potential and become confident and successful adults. Validate their experience. Your child needs to hear from you that you believe their pain is real. The adult test: If my child were an adult and I were their boss, would I let them call off of work because of their pain today? Teach them the difference between things that hurt, and things that are harming them. Acknowledge that their pain is not fair, but remember that belonging and hope are powerful. Establish reasonable expectations: Let them know that you will do what you can to help them, but establish the expectation that doctors cannot fix every problem. Doctors spend their whole lives in school. They are always learning. 1. Validation is Key It can be incredibly damaging for kids to hear that their pain is "all in their head", to be called a "wuss", accused that they "aren't trying hard enough", or even accused of trying to get out of doing something they don't like. Sadly, your kids are likely to hear all of these messages. As much as most parents desire to shelter their kids from these hurtful things, even if your child doesn't hear them as a kid, they will eventually hear them as an adult. The challenging thing is that if we are honest as parents, we have to admit that sometimes it can certainly seem like some of those things are true of our kids. To provide a personal example, I once suffered from a chronic cough as a child for months that perplexed my pediatrician. When my mother asked if there was any time I noticed coughing more, I replied "during math." My mother didn't think much of this reply because in fairness, I didn't like math as a child. I had a history of trying to avoid doing math homework because it was difficult for me. I had faked stomachaches at school, for my mother to arrive to pick me up and find me miraculously recovered because it was now time for lunch and recess. What my mother didn't know at the time was that my teacher was holding math class in the computer lab in the basement of the school. Unfortunately for me, it took an ER visit with chest x-rays to diagnose pneumonia, and a subsequent allergic reaction to penicillin (the antibiotic they prescribed me to treat it) to solve the mystery. We later discovered that I was in fact having an allergic reaction to penicillin mold in the school basement that was causing my symptoms. The truth of the matter is, parenting is a hard job. I didn't know how to give my mother the information that she would have needed to make the connection to solve the reason for my persistent coughing. My own mother, and lots of other well intentioned parents, sometimes struggle to tell if their child is trying to avoid doing something they don't like. Sometimes kids are whiny and a little bit dramatic. Sometimes when kids are truly hurting, it's hard to muster up the energy to try hard at something, because they're just exhausted from dealing with pain. The most important thing a parent can do isn't to prevent their kids from hearing negative messages, it is to help them identify and correct the messages, even if there is sometimes some truth in them. What your child really needs to hear is that you believe in them, even if sometimes you can't believe everything they say. While not everything your child tells you will be true, it is important that they know the pain is not all in their head. Acknowledging that your child's pain is real, and that it is hard to deal with is key. When in doubt, it's better to validate the experience. You can validate their experience and tell them you are sorry that they are hurting. 2. The Adult Test That does not mean however, that you have to allow them to use that experience as an excuse. Your child's headache may be real, but it does not change the fact that their math homework is due tomorrow. That's where the "adult test" comes in. Parents have to ask themselves: "If my child were an adult and I were their boss, would I let them call off of work because of their pain today?" As a parent who wants their child to thrive as an adult, your child is going to have to learn to shoulder the responsibilities of working, raising kids, and going to social events, while they are in pain. Millions of adults go to work with a head cold, the flu, back pain, or migraines every day. If your child's pain is something medicine cannot currently cure, it is our responsibility to teach them how to cope as best they can. If your child is permitted to use their headaches as a reason not to do their homework now, it will become a reason not to get a project done at work as an adult. If they are called out of school for it now, they will likely call off of work for it as an adult. It's important to raise kids with a healthy balance of understanding that sometimes, adults do call off of work because they aren't feeling well, but they also only get so many sick days a year. This can help parents set boundaries for their kids. It can even teach them budgeting of their time. If your child knows that they are only going to get 7 sick days a year that they can ask you to not go to school because of their pain, they will have to choose wisely. It may be helpful for you to think of it in the context of your own job's sick policy, or even Family Medical Leave of Absence (FMLA). A person is guaranteed up to 12 weeks of FMLA in a year that their employer is required to hold their job for them rather than letting them go and hiring someone new. Considering what your child's life will be like as an adult, if they choose to become a parent, is an even harder standard. Mom's and dad's don't get many sick days. Sure, they can occasionally ask the grandparents to come and help watch the kids for a little while or hire a sitter, but there are limits. Consider that you are going to be that grandparent your child calls for help later on, and if your child has trouble working because of their pain, the money for hiring a sitter may be limited. Putting the adult-test question to your current situation can help you set the tone of what is appropriate now, so that your child is able to cope as an adult and function in a work/family world. **Pro Tips - keep sick days as true sick days. Think about what you let your child do on days they stay home from school because of pain. While it is tempting to want to comfort your child and distract them from their hurt when they stay home sick, it may not help them in the long run. If your child gets to stay home, watch movies and eat junk food all day, they will be motivated to stay home from school. If on sick days you tell your child that they are expected to stay home in their bed, to sleep, and do the homework they are missing from school, they are less likely to stay home unless they really don't feel well. Most kids with pain feel better when they are distracted and moving, which often means that being in school is a better alternative to laying in bed. 3. Hurt Vs. Harm It's important to teach your kids that while their pain is real, it may not necessarily mean that they are in danger or are injured. In short, in a healthy body, pain is supposed to tell you about danger. If you put your hand on a hot stove, it hurts because the hot stove is causing tissue damage, burning your hand, and is dangerous to your body. Pain is supposed to get you to move your hand off the stove, and possibly to go to the doctor depending on how bad the burn is to get it treated. For people living with chronic pain, there are plenty of everyday activities that hurt, like sitting too long, a rainstorm blowing through, or even sleeping, that are not inherently dangerous. Learning to tell the difference between the pains that hurt (and the hurt is real), and the pains that are harming you (causing injury, and require medical attention), is important to helping your kids grow up and thrive as adults. This will help them to not waste money going to doctors for hurt pains that the doctors can't help them with, but also not to ignore harm pains, that if left untreated could be dangerous. For more on how to explain this to kids using the analogy of a car alarm, see Hurt vs. Harm & Car Alarms: Interpreting Chronic Pain. 4. Pain Is Not Fair It's important for your kids to know that their chronic pain isn't fair. In most cases, your child didn't do something to deserve this chronic pain that they have. Many chronic pain conditions are genetically linked and neither you, nor your child, got to choose your genome sequencing. It may help to explain to your child that almost every child has something about their body that they don't like. Some kids wish they were taller, or that they didn't need glasses. It is ok that your child wishes they had a body that didn't hurt and it's ok if they feel like it isn't fair. If your kids are a little older, you might remind them of Harry Potter. Severus Snape famously tells Harry Potter that "life isn't fair". While Harry and Ron complain that Professor McGonagall doesn't favor them like Snape favors Malfoy and the Slytherins, it is actually to their advantage in the end. While Malfoy received special treatment in their earlier years, it doesn't make him a better wizard in the end. He struggles in potions in their later years at school. While life isn't fair, there are many examples of this in pop culture where heroes experience unfair hardships that they then overcome. Reminding your kids of this in some of their favorite stories may help to give them hope and to help them feel like even if they face challenges and adversity, they are not alone. Like all kids who don't like something about their bodies, however, they will have to learn that there are things about the way our bodies are made that we don't have the power to change. At least not yet. The most that a child who is near sighted can do is to wear the glasses to cope so that they can see. It may help your child to think of chronic pain in their bodies as just one more thing that we can't easily change, and we therefore just learn to manage it the best that we can. It is also important to remember that we learn new ways to help all the time. Fifty years ago, your child's vision couldn't have been corrected surgically. Today, once their bodies are full grown, there are procedures like Lasik that correct near sighted vision for good. Even if your child has a pain disorder that is not curable now, that does not mean that a way to fix the problem won't be discovered in their lifetime. 5. Establish Expectations Being supportive of your child and advocating for them is important, but you also need to establish reasonable expectations of yourself and their doctors. Let them know that you will do what you can to help them, but establish the expectation that doctors cannot fix every problem. Doctors spend their whole lives in school. They are always learning, and they do not know everything. Neither you, nor your child's doctors are all powerful. This can be a challenging thing to teach children, especially when they are very young. Children look at their parents as super heroes when they are little. They often believe that a kiss from mom or dad can fix every boo-boo and make it all better. Sadly, as parents, we know that this is not true. As much as we want to be able to heal every hurt for our kids, we cannot. As adults we defer to doctors to be able to help us, and sometimes they don't have the answers either. Many well intentioned doctors struggle with where to draw the line in ordering expensive tests for your child to try and find a diagnosis. Even if the tests are unlikely to show much. There is a delicate balance of looking for answers thoroughly, without unnecessarily bleeding your wallet dry. It is ok to grieve with your kids about it. It is a healthy thing for them to see you process that it is hard for you; that you cannot fix their pain. It lets them know that you care and that you would take it away if you could. Many children with chronic pain also have parents who suffer from chronic pain as well. It is worth considering how you respond to your own doctors who are unable to help and fix your health problems. When it comes to children, they say that "more is caught than taught" and kids are the mirrors that let you see more of your own shortcomings than you might like. Don't forget that setting a reasonable expectation of seeking support and how to accept it when none is available for you, starts with the way that you model it for your kids in your own life. How you manage your own emotions and behavior matters. In closing, one of the best things you can do as a parent to raise kids with chronic pain and help them thrive is to take care of yourself well. As you learn how to manage your own health, your kids will too. That might mean learning to eat healthy together, adopting an active lifestyle to the best of your ability, or seeking help from family, friends, or medical professionals when you need it. This article is intended for educational purposes to help you think through your parenting approach, but it is not intended as a replacement for individual medical advice. You are encouraged to seek advice from appropriate medical professionals such as counsellors for mental/psychological health, and medical specialists for individual conditions as you need it. If you are interested in learning how to adopt a healthier, more active lifestyle with chronic pain, consider scheduling a physical therapy appointment for a physical therapist to evaluate your unique needs here.