EDS Type 3Handbook:

Tips for Saving Hypermobile Joints





1.  The Facts

6.  Nutrition

11.  Injuries

2.  The Symptoms

7.  Rest

12.  A Few More Tips

3.  The Diagnosis

8.  Learning How to Move

14.  Alternative Medicine

4.  Medical Treatment

9.  Exercise

12.  A Final Word

5.  Treating Yourself

10.  What to Avoid

16.  Questions & Answers





The Facts


     Since you are reading this, you probably already know something about Ehlers-Danlos Syndrome (EDS) Type 3. It's what the contortion artist or the rubber man at the circus might have. Though people with EDS Type 3 have varying degrees of flexibility, most can stretch into neat positions, maybe even dislocate a joint to amaze their friends, make funny faces, and may have stretchy skin as well. EDSers, as they sometimes call themselves, have enjoyed fantastic careers as dancers, gymnasts, and pianists thanks to their stretchiness.

     But EDS Type 3 can also lead to problems. It is those problems that this handbook was written to help you prevent, deal with, or even overcome. Much of it could apply to anyone. Other tips are meant to counter popular advice that is good for "normal" people but dangerous for someone with hypermobile joints.

     Let's get one thing clear from the outset: EDS Type 3, Benign Joint Hypermobility Syndrome (BJHS), Hypermobility EDS, and "hypermobile joints" were once thought to be separate conditions. Today we know differently, thanks to research scientists. If you were diagnosed with any one of these, you have EDS Type 3.

     EDS Type 3 is an inherited disorder of collagen production. Collagenous tissue is found throughout your body. If you have EDS Type 3, some of that collagenous tissue is defective. It can be inherited either from one or both parents, depending on what type of Type 3 you have--because there are different types of Type 3 as well. Some are caused by the COL3A1 gene. Others are caused by the tenascin XB gene. There are others for which we don't yet know the cause. Some types of Type 3 are only found in a single family line. What it means to you is that you have less collagen, less dense collagen, or more disorganized collagen than other people. And what that means is that your tissues, whether in your organs, bones, musculoskeletal system, or skin, are stretchier than other people's. But they are also more fragile--and that's why you have pain.

     Tendons are tissues made of collagen that hold your muscles to your bones. Ligaments are tissues made of collagen that hold your bones to other bones. Each joint has both tendons and ligaments. (And remember, you have a lot of joints: backs and jaws count, too. Even teeth have ligaments!) Each of your muscles is held together with a lot of collagen, too. If you have EDS Type 3, when your muscles, tendons, or ligaments stretch too much, the collagen tears. Even when you can't feel it happening, they're still suffering what we call "micro-tears": a sort of microscopic shredding of your tissues. Eventually they lose their integrity much like old rubber bands. It will take less and less to tear them.


The Symptoms


     What all this means is that you will have painful joints. Swelling and inflammation are often absent, but the pain is there. Years later, you will most likely begin to get arthritis in your affected joints.

     Your body is constantly working to heal your joint damage. This is true of everyone, but even more so for EDSers. It's a big job, which means you may suffer other symptoms like fatigue, foggy thinking, and so on--which is why many people with EDS Type 3 are misdiagnosed with "fibromyalgia."

     If your organs have been affected, you may have irritable bowel syndrome (IBS), postural orthostatic tachycardia syndrome (POTS), menstrual hemorrhaging, recessed gums, and shifting or crowded teeth. Nearly all EDSers have myopia and flat feet, and many have scoliosis. Bones become strong from muscles and tendons pulling on them, so your bones begin losing density as you age because stretchy tendons don't pull as well. There's good news here though: it's possible that EDS Type 3 bones are less likely to fracture.


The Diagnosis


     There is no lab test or any other objective test that will show EDS Type 3. Diagnosis can only be done clinically (in the doctor's office) by physical examination, medical history, and information you give about your family. Find a doctor who is familiar with EDS Type 3. Your best bets are physiatrists (Physical Medicine & Rehabilitation, or "PMR doctors") or rheumatologists. Try not to be discouraged when visiting doctors: many do not know much about EDS or their knowledge is outdated.

     In your physical exam, the doctor may pull at your skin. (Though not all Type 3 EDSers have especially stretchy skin). He may feel it to see if it is soft and pliable. He may push, prod, and knead your joints, like wrist and knees, to see how mobile they are. And he may ask you to show him how your joints hyperextend or dislocate. This is not a problem for children or even many young adults, but it could be if you are older. First, your joints are already damaged: doing party tricks will injure them. Second, you have probably lost a lot of flexibility due to joint damage. Use your judgment in deciding what and how much to do. Most doctors will have enough other information and will be happy to take your word for it rather than cause you further injury.

     Why is a diagnosis important? Because it will help you understand what is going on with your body and what you can do to help it. It is also valuable to know if you're facing surgery: doctors and dentists need to know that your tissues are fragile before they start stretching or clamping them, or putting pressure on your joints.


Medical Treatment


     Your doctor may refer you to a physical therapist. This is good news and bad news. Physical therapists are highly trained--in "normal" musculoskeletal issues. They aren't trained to handle EDS and they can't climb inside your body to see its needs or limitations. It's best to use PT's as valuable consultants: they can help with series of exercises and equipment to use. Letting them manage or supervise your rehab, though, is a recipe for disaster. Manage your own rehab!   Note: do not do rehab exercises in a warm pool. It feels great, but you do not want to loosen up your joints before using them.

     You may be sent to an occupational therapist to help you cope with EDS in your daily activities. Again, an OT is trained to help "normal" people. But once you have verbalized your needs, an OT can help you find better and more efficient ways to do things, more ergonomic solutions for your desk or worktable, better chairs, helpful devices, and so on.

     Pain control is important. Don't let anyone persuade you otherwise. Pain becomes chronic when it is allowed to continue too long. Chronic pain can become worse or more widespread. Your doctor may recommend Tylenol or anti-inflammatories like ibuprofen. This is not good for several reasons. You should not take any of these drugs for life because ultimately they will shorten your life. (EDS isn't going to affect your life-expectancy, so why let drugs shorten it)? Anti-inflammatories are not recommended for your many joint injuries because the problem is not inflammation. Tylenol is very effective, but it is toxic and can be deadly if you're using it regularly and become confused about timing. The best and safest pain control is an opiate such as hydrocodone (Vicodin or Lortab).

     No, despite the famous "House" episodes, you will not become addicted to hydrocodone. Study after study has demonstrated conclusively that those who take opiates solely to relieve pain do not become addicted to them. Keep the dose low enough that you don't notice any effects on your alertness or mental acuity and you're good to go.

     Doctors often want to prescribe drugs that will affect your brain's neurotransmitters. Many are called "anti-depressants." There are other drugs, like Neurontin (gabapentin), that may be suggested for you. All of these drugs can help erase your pain--and feeling pain-free is great. But they will also cause weight gain for many people. If you are one of those people, watch out! While weight gain may just be an "unwanted side-effect" for normal people, it's an EDSer's biggest enemy.

     There are other reasons to approach medications with caution. Many EDSers seem more sensitive to new chemicals than other people, experiencing rare side effects. So for example, your doctor may suggest omeprazole to calm your stomach from all that ibuprofen you're taking--but the omeprazole may give you joint pain that will make you want to die. (Ironic, no)?

     Or a doctor might want to put you on an antidepressant. Just a small dose to help your pain. But if you end up with insomnia, dry mouth, seizures, or restless legs syndrome, your pain will be far worse. If the antidepressant does manage to erase your pain without side-effects, you may be in danger of mis-using your joints and causing further injury. (Hydrocodone, oddly enough, allows you to feel there is something wrong without feeling it as "pain." In other words, it allows you detach from your pain).

     Unfortunately, I have never met a doctor who was acquainted with all the side effects of a drug or who even bothered to mention common ones to a patient. So if you get side-effects, no one may even figure what the problem is. You may well end up on more medications to control your new "symptoms." So it is up to you. When you get a prescription, go home and get right on your computer. Go to RxList and enter the medication in the search box, then look for adverse effects. That website offers you complete information, so you will find even the rarest side effects there. If a month goes by and strange things are happening or you don't feel right, go back and check the list of adverse effects again.

     A doctor may want to do surgery on your joints. Some people end up in a situation where it is necessary. You want to steer clear of surgery on yours if you can help it, though. EDS joints do not respond well to surgery over the long haul. Get more opinions--and don't forget your own opinion.


Treating Yourself


     The most important treatment plan is your own. This is an illness that modern medicine has failed to cure; instead, it treats symptoms. Much of what modern medicine offers to treat your symptoms will make you sicker in the long run. The situation is far from hopeless, though: there are many effective strategies open to you. You will be taking responsibility for your own health. You will be fashioning your own treatment plan and directing your own rehab.

     Your body expends large amounts of energy and materials every day trying to heal from insults to its tendons and ligaments. Younger EDSers often don't notice what's going on because they're healing very quickly. After 25, that gets a lot harder. The best thing we can do for our bodies is support our body's healing process by feeding it the nutrients and rest it needs, keeping it away from toxins and useless stuff that it has to break down and get rid of, giving it plenty of high-quality rest, and exercising it to stimulate repair and improve circulation.

     This handbook was written for everyone: young to old, fit to sendentary. Some may not want to live their lives in a bubble; others probably wish they could. It's impossible to give guidelines for every individual. That's why it's so important for you to figure out a program that works for you. Whatever you do, don't expect perfection. Moderation is key to your success.

     So take a minute now to get yourself a pen and a piece of paper so you can jot down ideas for your new, personal treatment plan as we go along. And don't forget to come back if you feel like your program might need a tune-up!


Nutrition


Rest


Learn How to Move

Protect yourself from injury. There is only so much healing your body can do in a day and most EDSers' bodies are not keeping up. There are exercises you can do to improve your balance, which is important to prevent wrenching tendons or ligaments. Nearly all EDSers have a problem with proprioception. That is, your brain isn't entirely sure where your joints are at any given moment or what they're doing. It may seem like a lot of extra effort to pay attention to your joints when you move, but practice will make perfect. That is, as you spend time focusing on your joints you will find that moving becomes easier and needs less of your attention.


Exercise

Exercise can strengthen your joints if you do it right. You need to slowly stress your tendons so they can be gradually broken down and replaced with healthy collagen tissues. Toned muscles will stablilize joints and protect your ligaments. Exercise will also help you lose weight: extra pounds can cause injury to your back, hips, knees, ankles, and feet.

Caution!


  • Most injuries will not show up until the next day or, more commonly, two days later. Unlike other people, you're not going to be able to tell that you're doing too much because your body won't warn you. Those micro-tears are happening while you're pumped up with endorphins and not feeling a thing. (If you feel pain, you have already seriously injured yourself).

  • Increase your strength slowly. The tortoise definitely wins this race. You want to avoid injuring your hands or any other joints, but there is another danger as well. Your muscles may grow very strong very quickly while your tendons are still weak. Too much muscle can pull at your tendons and injure them if they're not ready to take the load.

  • Have you heard the saying, "No pain, no gain"? That isn't true for EDSers. Say instead, "Gain without pain."
    
    
    Other Exercises

    
    
    What to Avoid

    You can do things to protect yourself from daily insults to your joints. Here are some things you might want to avoid:

    
    
    Acute and Chronic Injuries

    
    
    A Few More Tips

    
    

    Alternative Medicine


         The author has tried countless herbs (folk, ayurvedic, and Chinese); acupuncture; Qi work; reiki; homeopathy; applied kinesiology; radish seed acupressure; glucosamine and chondroitin; MSM; curcumin; melatonin; adrenal gland extract; capsaicin; many other strange and wonderful substances from health store shelves; and removing dairy and glutens from the diet. None of these methods made the slightest difference in her health. Your mileage may vary.

         What does help (besides the tips found above):   nature, friendship, touch, pets, goals, laughter, a community, art, music, affirmations, and a positive attitude. Fortunately, you can have all these things for free!

    
    

    A Final Word


    Push yourself to lead an active, full, productive life, but don't push your joints. Never strain, overwork, hurry, "push through the pain," or try to "work it out" when you feel pain in your joints. EDSers have a very high pain tolerance, so pay attention to what your body is telling you.

    Push yourself, not your joints! Gain without pain!

    
    

    Questions & Answers

    
    
    
    All statements and opinions found on this website are those of the author, from the author's research and experience. They are not all-inclusive or definitive. They are not intended to replace the advice of a medical doctor. Persons using this website should understand that this website offers only ideas and suggestions that may be selected or modified to be used at their own discretion to meet their fitness goals.