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
Drink plenty of water. Your body needs water molecules for all its chemical reactions: from breaking down old tissues to building new ones; from fashioning your food into nutrients to creating and disposing of waste products. Your body needs water to operate. A body that is healing needs even more water.
Eat what your body needs to create new tendons, ligaments, and muscle: lots of a variety of vegetables, some fruits, and good protein. Eggs, turkey, chicken, liver, nuts, tofu, cheese and other milk products are good proteins. A 7-oz serving of meat per day along with cheese, nuts, or eggs earlier in the day may be enough protein for most people. Others may do better with more: listen to your body. (Don't forget the legumes & whole grains. No fad diets!)
Take supplements to ensure you're getting the right building blocks for your musculoskeleton: vitamin C (500 mg), a vitamin B-100 complex, vitamin D3 (see your doctor first!), magnesium, calcium, potassium, and fish oil with omega 3 fatty acids (1200 mg).
Get plenty of sun: make your own Vitamin D!
Keep sweets (from sugar to fruit) to a minimum. Your body uses glucose for energy. A body that is trying to heal multiple joint damage needs energy, but it doesn't need flood-or-famine energy, which is what sweets give you. And they'll just pack more weight on your body, hurting your joints.
Use xylitol or stevia as sweeteners. Other artificial sweeteners like aspartame and saccharin have a bad reputation.
Avoid carbonated beverages. Besides being useless, they always have some sweetener that you shouldn't be using--and the carbonation saps your bones of calcium. Try water, water with lemon, mineral water, tomato juice, or vegetable juice instead. You can even flavor your water: add a sliced cucumber to a pitcher of water and refrigerate overnight. Experiment with a lemon, an orange, a tangerine, mint, ginger, and so on. Or drink herb teas.
Keep fast food and processed food to a minimum. The last thing your body needs is a load of fats, preservatives, and toxins to break down.
Eat brown rice, whole wheat bread, and other whole grains. Over-processed grains have lost most of their nutritive value.
If your iron levels are low, see your doctor. It takes iron to rebuild tissues and some EDSers may need treatment for anemia.
Use healthy fats to cook: olive oil is good but not in high heat: use canola oil for that.
Rest
Get 7 to 8 hours of sleep a night.
Set a regular bedtime.
Keep naps to 15 minutes maximum.
If you find yourself laying awake: Get up, go in another room, eat a few almonds, and read a dull book.
Avoid coffee or other caffeinated beverages after noon.
Keep alcohol to a minimum and don't use it as a sleep aid. It messes up your sleep patterns.
Learn to meditate and do so if you're feeling over-tired or sore.
Get regular exercise.
Spend time outdoors for some sunlight during the day and keep your exposure to LCD/LED screens (computers, smartphones, portable media devices, tablet computers, etc.), television screens, and fluorescent lights to a minimum. The problem with all of these is that they don't provide full-spectrum light (however much their manufacturers may advertise that they do). Until they improve, try limiting your exposure to them to sensible levels. Controlling your melantonin levels naturally means better sleep for you. Tip: After a marathon session at your computer, spend good, quality time outdoors getting plenty of sunshine to naturally inhibit your pineal gland. Ditch the sunglasses if you have brown or black eyes and roll up your sleeves.
Keep your bedroom dark and cool.
If you are bothered by noise while you're in bed, use a white-noise machine.
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.
When climbing, descending, or navigating rough terrain, focus on your knees. Make sure you know what they're doing!
For every task, even taking milk out of the fridge, move with intention.
Become fully awake before getting out of bed. Be stable and sure of your body before taking your shower and dressing.
Avoid sudden twisting movements. They can play havoc with knees and hips. Learn how to pivot using your feet instead.
Use your limbs without hyperextending or subluxing them. Stand with your knees very slightly bent, for example.
Use proper dynamics when lifting: ask for help, tighten your stomach muscles, tighten your joints, hold the object close to your body, and use leg muscles to raise and lower heavy objects.
Think about how you do things. For example, instead of yanking open a heavy door, plant your feet and use your whole body to open it in a controlled, smooth motion.
Practice Tai Chi. Stay away from low-stance forms or martial arts that demand rapid movements and hitting. Tai Chi improves the connection between your brain and joints, improves balance, and teaches you how to turn and move without hurting your knees.
Practice DDP Yoga. It improves balance and stabilizes joints.
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.
Reclining bicycles are great for your knees. If your hands are okay, any bicycle will do.
Take long, easy walks on soft or irregular surfaces. No marching! Avoid concrete and asphalt whenever you can.
Tai Chi teaches balance and builds strong muscles and joints without stretching or impact.
DDP Yoga builds strong muscles and joints as well as flexibility without stretching or impact. While traditional yoga employs static stretches and injures EDS joints, DDP Yoga employs dynamic stretches: the muscles are all fully engaged, protecting your joints. Even better, you can learn it in your own home and do it at your own pace.
Weight-lifting: Start light and lift slowly and smoothly, moving with intention and focusing on your joints. Increase the weights very gradually over time. Do not allow your arm to hyperextend or even go completely straight while lifting weights. Never make jerky or quick motions while lifting weights and never strain. Exhale when you lift, inhale as you bring it back down. If you need to, ask for help from the gym attendant or a body-builder.
Be careful with weight machines that are meant to exercise the lower body. They can injure knees and hips.
For feet: Stand in place and move up and down slowly on the balls of your feet. When you're ready, hold light dumbbells. Gradually add weight. (Do not hyperextend knees!)
For knees: Do this exercise on your bed. Fill the toes of two long socks with rocks. Tie the socks together and drape them over one ankle with the rock-filled toes hanging down on either side. Lay on your back so your feet are hanging well off the end of the bed. Keeping your leg straight and rigid (not hyperextended!), slowly lift it and lower it. Do more reps until you feel it's enough. Move the weights to your other ankle and lift that leg. Now do the same thing for both legs while laying on your stomach, always keeping your lifted leg straight.
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
Running. Running stresses the joints.
Swimming. Swimming laps as an exercise regimen can be dangerous. Although the water will relieve your joints from gravity, shoulders, knees, ankles, and feet are especially stressed when you swim in ways they're not accustomed to feeling. Water can be the best exercise of all, but unless you're already a fit swimmer, you need to go slow and work up to longer or more vigorous swimming.
Pilates. Pilates appears to be an excellent set of exercises, but they are learned in a group. Group exercises can be dangerous because you're trying to keep up with people who don't have joint problems.
Group fitness workouts and "boot camps". As with Pilates, group exercises can be dangerous because you're trying to keep up with people who don't have joint problems.
Poweryoga. Power yoga is strenuous and utilizes too much stretching, too quickly, to be of benefit to an EDSer unless you are already fit.
Calisthenics. Good old calisthenics are great. They're quick, portable and handy--but you may be surprised at the stress they put on EDS joints if you have not done them in awhile. If you have been doing them all along, there is probably no reason to stop. No deep-knee bends, though!
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:
Contact sports.
For young people: approach gymnastics and dance with caution. Think of them as recreation rather than a possible career.
Repetitive physical movements.
Activities that require you to put heavy loads on your knees or require bending them.
Showing other people how you can hyperextend or dislocate joints.
Making funny faces: you can injure your jaw this way.
Treadmills and ellipticals at the gym. (A doctor may recommend the elliptical. Try it...but your problems with proprioception and wobbly joints could cause even more injury to your knees).
Standing or walking for long periods on hard, flat surfaces.
Surgery on your joints unless absolutely necessary.
Stretching as a warmup exercise. You're already stretchy enough.
Jumping right into exercise. Warm up by going slowly at first. Cool down by slowing at the end.
Traditional yoga.
Stretching to reach things: climb on a stool instead or walk around.
Personal trainers.
Massages.
Resting in ways that stress your joints
Artificial sweeteners (except for xylitol and stevia).
Capsaicin (e.g. in pain-relieving lotions): it will burn your EDS skin.
Spring-loaded shoes like Z-Coils: they will destabilize your knees.
Memory-foam slippers: they will destabilize your knees.
Uncomfortable shoes.
Letting kids hang on you.
Carrying objects or heavy purses long distances.
Being a hero. If you're strong, good for you. But don't try to push that car by yourself.
Acute and Chronic Injuries
Apply ice. As soon as an injury occurs, reach for the ice. Grab a package of frozen peas if you have nothing else handy. Ice the injured area for 20 minutes. Use ice again whenever it starts acting up. (This applies to backs as well; you might need to get someone to help you so you don't sublux a shoulder).
Don't use the injured joint. Putting pressure on normal tendons speeds healing. EDS tendons are different, so you'll need to walk a fine line. If you begin using the joint as quickly as doctors advise, you will make a chronic mess of your tendons. So give the joint some good rest. You can tell it isn't ready to use yet with some practice. Your joint may feel weak, almost strange. If you start to use it you may feel a sharb stabbing pain.
So if you need to stay off your feet, do it. If you need to stop using a finger or thumb, just pretend it's missing. If you need to put your arm in a sling to remind yourself, do it. If a jaw joint is injured, eat soft foods. Try not to use the joint until it begins to feel strong again. Even when you start to use it, be careful. Gradually begin to use it by moving with intention. If you feel pain, back off. Complete healing takes about 6 weeks.
Wear a brace or wrap. If a chronic injury is acting up, put on a brace. Wear it only as long as you need it, then take it off. A new injury shouldn't be braced tightly because it needs to swell up a little. Once the swelling has gone down, you can wear it a little more snugly to protect it from use or banging against something. Badly strained fingers can be taped to other fingers--or you can wrap up the whole hand and and wrist in an athletic bandage and not use it at all. You may choose to wrap your hands or elbows only at night, if you are in danger of hurting them while you sleep. If you have injured a joint badly enough, you will want to visit urgent care to ask for a soft cast or other aids as well as X-rays to make sure you haven't fractured cartilage or bone.
Keep it warm. Keep the joint from getting cold. (Unless you're icing it, of course). Cover it up. Wear long sleeves, pants, socks, or light gloves. If it's daytime, there are other things you can do to restore circulation: drink tea, get up and move around, meditate, exercise, sit in the sun, lounge in your favorite chair or couch with a blanket and take a short nap, light a fire, turn up the heat, put on some mittens.
A Few More Tips
Maintain a healthy weight. The less weight your back, hips, knees, ankles, and feet have to bear, the healthier they will be.
Learn how to use body dynamics to get out of bed, stand up from a chair or the floor, and enter or exit a car without twisting or straining knees or other joints. Think about how better to do these things and experiment with them.
Find a support group. Online groups are good. You will find most of the information you need from fellow EDSers. It's important to have a place you can go to ask questions--and it's nice to have support, too.
Keep alcohol to a minimum. Alcohol dehydrates you. It gives you instant energy and then depletes it. It numbs your pain so you forget to protect your joints. It interferes with your judgment and inhibitions, leading you to more injury. It messes up your sleep patterns. And it burdens your liver with detoxification processes when it could be working on healing your body instead.
Keep recreational drugs to a minimum for all the same reasons.
Air travel: Bring cash in case you need to ask for a lift from a skycap. ($5-20 depending on how much he does). Bring a neck-pillow or buy one in the airport and dress in layers so you can keep warm. Pack light and try to avoid carrying items on your shoulders. Use wheeled suitcases and hang other stuff from them. If walking barefoot will injure you, let TSA agents know. Flying will dehydrate you, so drink plenty of fluids. Ask for early boarding and have a steward help you place your baggage in the overhead.
Don't push yourself. Our bodies have hormonal cycles. Women have some powerful estrogen and relaxin cyles, but men have cycles as well and so do children. Some of the cycles make our tendons and ligaments more or less strong throughout the day, week, or month. This is true for everyone, but it's important for people with stretchy, damaged collagenous tissues to know so they can make use of that information. Weather, too, plays a role. There is even a cycle your body goes through when you exercise as it builds new muscle and rids itself of waste products. Listen to your body and give it the opportunity to heal. Push yourself to have a good life, but never push through pain!
If you're feeling sore all over, soak in a hot tub. Add salts for even better soothing.
If you're feeling sore, lounge in a recliner and cover up with an afghan or blanket.
Problems with your feet don't just hurt your feet: they hurt your ankles, knees, and hips. See a podiatrist if you have any foot pain, to correct any problems.
Use arch supports to give your feet support and keep your knees properly aligned.
Shoes with good cushioning and a good heel counter to keep your heel in place will help protect you from jarring impact, from your feet to your hips.
When large dogs are playing with each other near you, watch your knees. If they come barreling toward you in all that furry joy, prepare to turn your back to them and bend your knees.
Wear boots when you're on uneven terrain to stabilize your ankles.
Customize your shoes with orthotics. Buy shoes with deep toe boxes (stores or reviewers will sometimes even say "accomodates orthotics"). Remove the insoles and replace them with Plastazote Comfort Gel insoles. If the podiatrist suggests pads or "cookies" for foot problems, they can be found online as well and are easily attached right on top of the plastazote insoles.
If a joint feels like it hurts for no reason, check the temperature of the skin over it. If it's cold, either cover it or apply heat.
Flex your toes and hands during the day. Don't let them get too cold.
Avoid resting in uncomfortable positions.
Avoid holding uncomfortable positions, whether you're working or just holding your shoulders tight. Move around occasionally.
Avoid injuring yourself if at all possible (such as getting a sunburn). Injuries, like toxins, add to your body's healing burden.
Use aids to open packages, jars, tubes, and bottles. Knives, jar openers, scissors and pliers are your friends. If you're still having trouble, ask for help. Straining to open or move an object can cause a sudden rebound stress on your joints when the object gives way.
At the dentist's office: ask for a pillow for under your neck and a bite-block to hold your jaw open. Bring chapstick and apply to your lips. Warn the dentist about your EDS jaw. Many EDSers metabolize novocaine very quickly. Warn your dentist about this as well. (It's usually less of a problem today with the new local anesthetics).
Make your home a safe place: Keep clutter off your floor and make cabinets, drawers, windows, and doors easy to open and close.
Watch your posture. Good posture is difficult for someone with stretchy tissues, but poor posture can lead to a lot of pain, too. You'll get headaches, back pain, and your shoulder blades will pull away from your back, causing more chronic injuries. Correct your posture gently and often.
Pain is your body's way of trying to get your brain to pay attention to what is going on with it. Try sitting or laying in a comfortable position, closing your eyes, and focusing on your pain. Go into it, really experience it and what it is trying to tell you. If you do this correctly, the pain will disappear. Conversely, if you try to run away from your pain or deny it, it will get worse. Obviously you can't do this all the time, but it's a great technique if the pain is overwhelming and all you want is some relief.
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
"What about vegetarians and vegans?" Protein is essential to repair damaged tendons and ligaments and build muscle strength. Vegetarians can load up on soy, eggs, dairy, and complete proteins, but even this will not give them the amounts of protein they're going to need. Vegans, who avoid all animal proteins, are not going to even come close. Note: If you are fit and experiencing no joint pain, there is certainly no reason to change your diet!
"What about gluten or dairy intolerance?" These are not as prevalent as some would have you believe. But if you really do have either one of them, then change your diet accordingly. The key is to give your body what it needs and keep it away from what hurts it.
"Can I drink coffee and tea? Coffee is no longer a medical bogeyman. In moderation, it is even good for you, having a number of health benefits. Tea has great antioxidants (especially true for green tea) and improves circulation, which always benefits EDSers.
"I have chemical sensitivities." This falls under "toxins." Your body is sensitive to certain toxins and is warning you to stay away from them. Pay attention.
"Why do I need to see a doctor about Vitamin D3 and iron levels?" Both of these supplements can be toxic if you take too much. Anyway, why take them if you don't need them? Your labs will tell the story.
"What about fish?" Fish is a good protein. Some even has high amounts of the right fatty acids. But today's wild fishes can be loaded with PCB's and mercury, while farm-raised fishes don't approach the wild in nutritive value. Additionally, most of the fishes you can find in your grocery store or restaurant are being overfished, putting pressure on wild stocks--and farm-raised fishes often jeopardize the health of wild stocks. You're better off eating excellent proteins like eggs, chicken, and turkey and taking Omega-3 fatty acid supplements.
"Can I smoke?" If you smoke, your #1 goal should be to stop as soon as possible. Smoking not only introduces many toxins into your system, it ruins your circulation.
"Does biofeedback work?" I have not tried it, but there is no reason it should not work.
"I can't do all this! It's too much!" Then just pick out the most important stuff. And remember the key points: Hydrate, eat well, rest well, move with intention, and exercise.
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.