HOW TO TREAT HYPERMOBILITY SYNDROME/EHLERS-DANLOS SYNDROME TYPE III
Because HMS is a genetic condition – something you are born with – there is no ‘cure’ for it, per say; however, all of its symptoms are treatable and with proper management HMS patients can live active, healthy, and fulfilling lives. How HMS is treated varies based on the specific symptoms a patient is experiencing. HMS can cause a wide range of symptoms varying from joint pain to GI problems to heart palpitations. Even though symptoms may vary greatly, there are a few simple steps that all HMS patients can take to help manage their disorder. After about 3 years of trial and error my doctors and I were able to find a treatment plan that has been effective for me and that I think will help other patients too. The key, I have found, is to reach the right balance between 5 different types of treatment (as represented by the star graphic above) – physical therapy, medication, alternative therapies, symptom-specific treatments, and lifestyle modifications. I hope this post will help you cut through all the confusing information surrounding various treatment options and help you identify the treatments that work best for you. As you create your own treatment plan it’s important to remember that treating HMS takes a lot of flexibility (no pun intended!) and you constantly have to be ready to change your strategy when new symptoms present themselves, so it helps to talk to your doctor so that they can plan ahead, you always want to have other options already planned out if the treatment you try first doesn’t work. Perseverance is also key because there is no one treatment, one doctor, or one doctor’s appointment that can solve all of your problems, treatment is a process you have to take step by step, but as you do you will learn more and more about your body and what works for you so you can tailor your treatments more and more to your needs until you find the right combination. It’s a long journey, but know that you are not on it alone and that you have the strength within you to beat this! And as always, never give up hope!
1. Physical Therapy – Without a doubt, physical therapy is by far the most important thing you can do to treat HMS, because it is the only therapy that can truly treat the source of pain in HMS, namely muscle instability. PT is important because we can use it to strengthen the muscles around our joints, gain overall muscle tone, and improve our body mechanics and muscle recruitment, which helps to counteract the inherent instability in our muscles and connective tissues, relieving any pain that you may be in now and preventing more pain from happening in the future. It is just as essential, though, that you do the RIGHT physical therapy, and hopefully the guidelines below will help you find just that!
Getting Started
a. Make sure you find the right therapist – While physical therapy is important, if you don’t find the right therapist they can end up doing more harm than good. You don’t have to find a therapist familiar with hypermobility, though, because there aren’t that many around, all you do need to find someone who is willing to listen to you, to do some extra research, and to take things slowly. If you are looking for a PT, I recommend going to a practice that is oriented more towards rehabilitation than towards sports medicine. A lot of physical therapists are used to working with athletes and will try to push you really hard, acting more like a coach than a therapist, telling you to ‘work through the pain’ and ‘suck it up.’ That is the kind of thing that you want to avoid! The first PT I saw was like that, and when I came home from therapy it would take me a few days to recover because I would be in so much pain. As a rule you should always leave your PT feeling better, not worse (you may be tired because you worked your muscles, but you shouldn’t be in active pain). You want your therapist to treat you more like a geriatric patient than an athlete, even if you are young and have participated in competitive sports. The biggest thing to remember is that the philosophy of ‘no pain, no gain’ does NOT apply to hypermobility syndrome. Never let your therapist bully/talk you into doing an exercise that is actively painful for you – if a certain exercise hurts, ask them to find another way for you to activate that same muscle, and see if it is less painful. A lot of times isometric exercises are a great alternative for people with HMS because they use resistance instead of weight and do not require you to move your joints, so you are less likely to injure or dislocate them during an exercise. It is also very important that your therapist progresses slowly, not increasing repetitions or weight too soon. The goal of your physical therapy should be to increase muscle tone over muscle strength, so you should focus on increasing the repetitions of each exercise at little or no weight, rather than increasing the weight or resistance used. A lot of times, people with HMS feel pain after rather than during an exercise, so make sure that you keep track of how you feel after your appointment, and let your therapist know so that they can gage how fast to take things. Communication and teamwork are key, so make sure you find someone who is understanding and will respect your opinion when you say ‘this exercise hurts’ or ‘that’s too many reps.’ And if you end up with a PT who doesn’t do those things, know that you have the right and that you SHOULD go find one who will - this is your body and this is your life and you deserve the best care possible!
b. Focus on exercises to increase muscle tone (not strength) to help support your joints-
Whether you are seeing a PT for a specific injury or just generalized joint pain, the focus of your therapy should be on exercises that will increase joint stability by increasing muscle tone. So, what’s the difference between muscle tone and strength? Strength is the maximum brute force that a muscle can create, but this can only be sustained for a short time, that’s why it's called a ‘burst of strength.’ Tone refers to the amount of tension in a muscle while it is at rest, or the ‘continuous and partial contraction’ that is present in your muscles when you are not actively using them. For a hypermobility patient, tone is more important than strength because muscle tone is responsible for maintaining proper posture and provides resistance to any stretching or sudden movement that might occur when a muscle is at rest, which helps prevent against injuries and also helps support our lax joints which can tend to ‘pull apart’ due to gravity when we are at rest. To increase muscle tone rather than strength, your goal should be to increase the number of reps of an exercise while maintaining very low weight or resistance, and pay special attention to your technique - the quality of a movement/exercise is much more important than the quantity of the reps or weight used because you need to make sure that you are recruiting the correct muscles, otherwise other muscles can end up ‘helping’ the muscle you are trying to tone, diminishing the effectiveness of that exercise. Doing exercises in front of a mirror or a trainer can help you make sure you are using the correct technique and targeting the right muscles. Also, don’t rush through your exercises, when you are using a lot of weight you have to do reps quickly, but when you are toning a muscle it is better to use slow, smooth, and continuous movements, this will help you get the most out of each rep. Finally, when doing physical therapy it often helps to first begin by focusing on the larger recruiter muscles (like the abs, larger back muscles, thigh muscles, and glutes), and then once those have become more toned and stable, move on to work on the smaller muscles fibers (like the hip flexors). Focusing on large muscles first will help diminish joint pain by providing stability and also make it easier to isolate smaller muscles later on. I won’t lie, increasing muscle tone and stability can be a long and tedious process because progress is often slow (as my physical therapist explained, it can take months of work to stop getting worse and stop your muscles from getting weaker, but it can take years of therapy to start getting better and acquire muscle tone), but don’t give up on an exercise plan because you don’t instantly see results or feel that it’s not working, it is but progress will be slow, tone is something that has to be built up over time - so stay strong, take things one day at time and don’t give up, your work will pay off and you will feel better!
c. Don’t forget core strength – No matter where your pain is or what joints give you the most trouble, it’s important to work on strengthening your abdominal muscles. Core stability is essential for any HMS patient because it helps improve posture and takes stress off of other, smaller joints. Think, for example, about bending over to pick up a bag of groceries. With a weak core the easiest way to do this would be to bend over, hunching your back, grab the bag with one hand and yank yourself up, the bag hanging from your arm. In this movement, all of the weight of the bag is put on your upper back (which you have hunched forward when you bent down) and the shoulder, elbow, and wrist of the arm holding the bag. With a strong core there is a much more efficient way to accomplish the same task – instead of bending your back, you can engage your core muscles while you squat slightly and bend over at the hips, keeping your back straight, then lift the bag by the bottom with both hands and hug it to your stomach, then stand up slowly keeping the back straight. When done this way the entire weight of the bag is supported by your abdominal muscles, so your other joints don’t have to strain in the process of bending down and standing back up. Having strong abdominal muscles means you can rely on your core when performing more strenuous or complex movements/tasks instead of straining or hyperextending other smaller joints. When in doubt if a movement or activity is painful just engage your core muscles and it should make it easier and more comfortable. In terms of how to strengthen your core muscles I recommend modified Pilates exercises. I would not recommend taking a Pilates class because in the USA especially Pilates classes can be more competitive and about pushing yourself rather than about gentle strengthening. Instead, ask your PT for some easy ab exercises (preferably mat work or with a Swiss ball but NOT on any weight machine) or see a licensed therapeutic Pilates instructor for some one-on-one classes. It can also be helpful to buy a Pilates book – I recommend The Pilates Bible by Lynne Robinson, Lisa Bradshaw, and Nathan Gardner (http://www.amazon.com/Pilates-Bible-Lynne-Robinson/dp/1554076927/ref=sr_1_1?ie=UTF8&qid=1317420498&sr=8-1) – so that you can study specific positions and how to modify them if need be so you can know you are using the right technique and doing each exercise safely. Studying a book also makes it easier later on if you want to join a therapeutic Pilates class or follow a Pilates video at home. Whatever you decide, make sure you start slow and simply - because we are so flexible many HMS patients are not used to engaging their ab muscles, so try starting with a simple pelvic tilt or just try sitting on a Swiss ball, then gradually work up to more complicated exercises. It’s also important to make sure that you work both the upper and lower abdominals, so be sure to have an ab routine that is diverse, that will target both sets of muscles and will also test your core while in-motion (i.e. you must keep your core stable while moving your arms or legs). And remember you don’t have to have a six-pack in order to have a strong core, your goal as always is tone and stability, not washboard abs!
d. Work on Proper Posture and Muscle Recruitment - As your muscle tone and general strength increases it is important that you begin to work on improving your posture, movement, and muscle recruitment to make sure that you don’t lapse back in to old patterns that can lead to pain and dislocations. Most people with hypermobility syndrome have bad posture as a result of the laxity of their tissues (see pictures on blog), so a lot of patients find themselves in postural training because their doctors blame their joint and muscle pain on this bad posture. While bad posture does contribute to pain it is not the primary cause of pain in HMS patients, rather it is yet another symptom of their inherent laxity. Hypermobility patients have a hard time maintaining neutral/proper postures because they have the most stability at the end range of their motion, that's why they tend to lock their joints back (like their knees when they are standing, their elbows when they are lifting something, or hunching their shoulders when they are sitting), which results in poor posture. While it is important for a HMS patient to learn what proper postures look like they will not be able to hold those postures are very long until they increase the strength and stability of their joints through physical therapy. That's why it's important to approach postural training after physical therapy, otherwise it can't do as much good. You can start small by just trying to ‘unlock’ your knees the next time you are standing in a line and see how long you can hold them there before they become too unstable (what I like to call Jell-O knees). Keep doing that and over time you will find that you will be able to stand correctly longer and longer. There are also other therapies -particularly the Alexander technique, the Feldenkrais Method, and Rolfing/Structural Integration -which are designed to teach patients greater body awareness and to retrain them to move more efficiently and assume proper postures. These methods can be highly effective, but again I would suggest trying them after going through physical therapy. While you are still in physical therapy you can also ask your PT or an occupational therapist to help you figure out better ways of doing your daily tasks. I had my PT teach me how to vacuum, get into and out of a car, to lift groceries, to push a rolling suitcase, to pick things off the floor, to sit up out of bed, and lots of other simple tasks in a way that would be best for my body. If you can change the way you do little things throughout the day the benefits will build up over time and you will begin to see a big improvement in your pain and fatigue levels. When you have poor posture or move inefficiently this puts extra strain on your already unstable joints, causing additional pain, and also uses up precious energy that you could be using for something else. Poor posture, inefficient movements, and improper muscle recruitment are a big reason why a lot of HMS patients have pain or become fatigued while doing simple day-to-day tasks, and improving those things can make a huge improvement in their quality of life. Another thing that can help is just trying to increase your awareness of your own body. Before you move, take a second or two to visualize it in your mind, ask yourself ‘what is the best way for me to do this?’ When in doubt break a movement down into its simplest parts -like if you need to twist and bend down at the same time, first turn your whole body towards what you are going to pick up, then bend down at the waist, stand back up, and then turn around to face your original direction. Breaking up complex movements into smaller, easier movements will keep you from straining your joints and make it less likely that you will fall or injure yourself. It is annoying at first to take the time to plan out all of your movements but it will soon become a habit and second nature, and it will pay you back a hundredfold. Relearning how to move and how to maintain better posture is key for any hypermobility patient because it will reduce the wear and tear on their already unstable joints, preventing a lot of the daily ‘micro-trauma’ which is responsible for their joint and muscle pain. It's all about working with your body, learning its limitations and strengths, and figuring out how to do the things you want to do and a healthy way. It might take some figuring out but I promise it will be worth it in the end!
d. Work on Proper Posture and Muscle Recruitment - As your muscle tone and general strength increases it is important that you begin to work on improving your posture, movement, and muscle recruitment to make sure that you don’t lapse back in to old patterns that can lead to pain and dislocations. Most people with hypermobility syndrome have bad posture as a result of the laxity of their tissues (see pictures on blog), so a lot of patients find themselves in postural training because their doctors blame their joint and muscle pain on this bad posture. While bad posture does contribute to pain it is not the primary cause of pain in HMS patients, rather it is yet another symptom of their inherent laxity. Hypermobility patients have a hard time maintaining neutral/proper postures because they have the most stability at the end range of their motion, that's why they tend to lock their joints back (like their knees when they are standing, their elbows when they are lifting something, or hunching their shoulders when they are sitting), which results in poor posture. While it is important for a HMS patient to learn what proper postures look like they will not be able to hold those postures are very long until they increase the strength and stability of their joints through physical therapy. That's why it's important to approach postural training after physical therapy, otherwise it can't do as much good. You can start small by just trying to ‘unlock’ your knees the next time you are standing in a line and see how long you can hold them there before they become too unstable (what I like to call Jell-O knees). Keep doing that and over time you will find that you will be able to stand correctly longer and longer. There are also other therapies -particularly the Alexander technique, the Feldenkrais Method, and Rolfing/Structural Integration -which are designed to teach patients greater body awareness and to retrain them to move more efficiently and assume proper postures. These methods can be highly effective, but again I would suggest trying them after going through physical therapy. While you are still in physical therapy you can also ask your PT or an occupational therapist to help you figure out better ways of doing your daily tasks. I had my PT teach me how to vacuum, get into and out of a car, to lift groceries, to push a rolling suitcase, to pick things off the floor, to sit up out of bed, and lots of other simple tasks in a way that would be best for my body. If you can change the way you do little things throughout the day the benefits will build up over time and you will begin to see a big improvement in your pain and fatigue levels. When you have poor posture or move inefficiently this puts extra strain on your already unstable joints, causing additional pain, and also uses up precious energy that you could be using for something else. Poor posture, inefficient movements, and improper muscle recruitment are a big reason why a lot of HMS patients have pain or become fatigued while doing simple day-to-day tasks, and improving those things can make a huge improvement in their quality of life. Another thing that can help is just trying to increase your awareness of your own body. Before you move, take a second or two to visualize it in your mind, ask yourself ‘what is the best way for me to do this?’ When in doubt break a movement down into its simplest parts -like if you need to twist and bend down at the same time, first turn your whole body towards what you are going to pick up, then bend down at the waist, stand back up, and then turn around to face your original direction. Breaking up complex movements into smaller, easier movements will keep you from straining your joints and make it less likely that you will fall or injure yourself. It is annoying at first to take the time to plan out all of your movements but it will soon become a habit and second nature, and it will pay you back a hundredfold. Relearning how to move and how to maintain better posture is key for any hypermobility patient because it will reduce the wear and tear on their already unstable joints, preventing a lot of the daily ‘micro-trauma’ which is responsible for their joint and muscle pain. It's all about working with your body, learning its limitations and strengths, and figuring out how to do the things you want to do and a healthy way. It might take some figuring out but I promise it will be worth it in the end!
e. Try hydrotherapy first, especially if you have limited mobility or chronic pain
f. Adopt joint-healthy physical activities (T’ai Chi, therapeutic Pilates, certain types of yoga, rollerblading, walking, swimming and water aerobics)
g. Don’t be afraid of stretching – learn to stretch muscles without overextending your joints, try passive stretching techniques such as Active Isolated Stretching (AIS)
2. Medication
a. Long-term pain medications- tri-cyclic antidepressants, SSRI’s
b. Short-term pain medications – try opiates like Tramadol or Oxycodone but try to stay away from sedatives like Diazepam
c. Other pain medications - Muscle relaxers, Lidocaine patches, over the counter pain medications and creams
d. Supplements
3. Alternative Therapies
a. Bio-feedback and Neurofeeback – these therapies teach you how to regulate your body’s pain response and can reverse the changes in the brain which occur due to chronic pain
b. Relaxation – try meditation, hypnosis, guided visualization
c. Acupuncture, Eastern Medicine
d. Massage and aromatherapy
e. At-home pain treatments – a hot bath with Epsom salts, alternate ice and heat on painful joints, use heating pads and electric massagers for muscle pain, try deep breathing, learn to distract yourself
f. Counseling – it’s important to talk things through with someone and get outside validation for your suffering
4. Symptom-Specific Treatments
a. GI problems – fiber therapy and laxatives
b. POTS (Postural Orthostatic Tachycardia Syndrome)– certain medications, increase fluid and salt intake, wear supportive hose on legs, don’t stand up to quickly!
c. Heart problems – medication, check for mitral valve prolapse or problems with the autonomic nervous system
d. Migraines – medication, caffeine, lifestyle changes, ask your doctor if your migraines might be muscular/tension headaches and if so try cranial sacral massage
e. Periods – don’t be afraid to try progesterone especially if estrogen-based oral contraceptives fail to relieve symptoms
f. Anxiety and Depression – they can often have physical triggers so talk to your doctor to determine whether your feelings are more physical or psychological in nature to make sure you get the right treatment
5. Lifestyle Changes
a. Break up tasks into smaller parts and scatter them throughout the day and alternate activities to avoid repetitive movement and fatigue
b. Body and movement awareness – learn better ways to do everyday tasks, after doing PT to increase your muscle tone relearn proper posture
c. Police yourself – learn how to push yourself a little bit on bad days so you don’t go backwards and to hold back a bit on good days so you don’t overdo things and cause more pain
d. Learn to be a problem solver and to adapt – don’t think about what you can’t do but instead brainstorm ideas of how you can modify the things you love so that you will be able to do them (don’t be afraid to use adaptive devices like pillows, walkers, canes, braces, wheelchairs, etc., be creative!)
THERAPIES TO AVOID
1. Surgery – any surgery has a much lower success rate in hypermobile patients, there is increased risk of poor wound healing, and they can actually damage the joint even further and put additional stress on surrounding joints causing problems in them as well
2. Chiropractors – its best to avoid any sudden or severe manipulations of joints due to the risk of dislocation and bruising, if you have a joint that is ‘out’ and needs to be manipulated back in try going to a physical therapist or an osteopath as they are usually more gentle and can show you tricks for how to put your joint back in yourself
3. Prolotherapy? – the jury is currently out on this treatment, but because it relies on the body’s ability to make scar tissue it can be expected to be less effective or take more procedures to work since the scar tissue a hypermobile patient’s body makes is actually even more lax than their other tissues and it is also possible that the injection of irritants in to the joints to prompt the creation of scar tissue could increase the discomfort in that joint
