New HMS clinic in UK

Great news for HMS patients in the UK! 

Professor Rodney Graham, one of the world’s foremost experts on hypermobility, has led the foundation of a new Hypermobility Unit at the Hospital of St John & St Elizabeth in London. This cutting edge clinic, which also features doctors Alan Hakim and Hannah Kazkaz, both rheumatologists, will combine the services of gastroenterologists, geneticists, physiotherapists, pain psychologists, pediatricians and podiatrists to treat the whole HMS patient. Physiotherapist Rosemary Keer, who has co-authored two books with Dr. Graham, will also be working as part of this healthcare team from a separate location. This is now the largest and most specialized clinic in the private (non-NHS) section in the UK. I highly recommend that HMS patients living in the UK take advantage of this wonderful resource, it might take several months to get an appointment, but it is well worth the wait to get this level of care!

I want to applaud Dr. Graham for helping to make the UK a world leader when it comes to awareness, research, and treatment of hypermobility syndrome. He has created a holistic, compassionate system of care which I hope other countries will begin to emulate soon. Thank you Dr. Graham for your unwavering support of HMS patients and for fighting so hard to get this disorder the awareness and respect it deserves - you have truly touched the lives of patients around the world!

The unit is still working on creating a website, but information about the clinic can be found here - http://www.orthopaedicunit.org.uk/hypermobility-consultants

Love and Hope,

Chelsea

Simple Home Exercises

As I have mentioned before, physical therapy is the BEST way to treat the pain and joint problems associated with HMS ... but, you have to be careful to do the exact RIGHT types of exercises, or you can easily exacerbate your symptoms and cause further damage. Finding the right PT, then, is crucial. The good news is, though, that you don't necessarily need to find someone who has experience treating HMS or is familiar with the disorder - because, let's face it, those people are few and far between! All you need is someone who will listen to you, is willing to do some research to try to understand your body better, and who will work with you gently, not pushing you to do things that hurt or to progress to quickly. Its often helpful to find a PT who works in a center focused on rehabilitation, not sports medicine - you want to be treated more like a geriatric patient than an athlete, the last thing you need is a drill sergeant! The focus of your therapy should be on increasing muscle tone and strength so that you are better able to support yourself and your joints, as well as muscle control - specifically balance, coordination, and correct muscle recruitment when moving. You should start out with very few reps and little or no resistance, and then slowly increase the reps - for a hypermobile person it's better to work towards a high number of reps at a very low weight/resistance level than a low number of reps at a very high weight/resistance level (you aren't trying to be a body builder!). When first trying a new exercise, try 5 reps twice a day (one in the morning, one in the evening) at no weight, and do that for 2 or 3 days just to let your body get used to that new exercise/movement, and then start doing the number of reps and weight suggested - this will help prevent soreness. It's also important to remember that people with HMS often feel sore/tired only AFTER they have finished the activity that is the cause of that fatigue/pain - sometimes I don't know if I overdid it exercising until I wake up the next morning! Because of this, it's important to start slow even if you think an exercise is too easy, and make sure to mention to your PT how you felt several hours and/or the day after your appointment so that they can better gauge your endurance level.

I get a lot of emails from patients asking me if I can recommend some easy exercises for them to try at home and I want to address that question here. First of all, though, I must state that I am not a physical therapist and hold no medical degree of any kind, so I am not qualified to prescribe an exercise program to anyone. That being said, I know how hard it can be to find a good PT - it might take going to 2 or 3 bad PT's before you find the right one. In the meantime you are in pain and want to be able to take control of the situation and do something about it. This sort of motivation and a desire to self-manage your disorder is wonderful and so important for anyone with HMS - a doctor can only help you so much, and at the end of the day YOU are in charge of your health. Because I believe self-management to be such an important part of fighting HMS, I do want to share a few very simple core exercises with you. No matter what your joint issues are and where your pain is, core exercise will always be useful. If you can create a strong and supportive core, this takes a lot of strain off of the other joints in the body and improves overall body mechanics, which in turn helps relieve pain. It is important to make sure you have proper form when performing these exercises, and, as always, NEVER do an exercise that hurts. These exercises have helped me, but everyone is different, so if something is uncomfortable just skip it and figure out what works best for you.

Love and Hope,
Chelsea

1) BRIDGING: Start by laying on your back with knees bent, legs shoulder width apart. Engage your core muscles (imagine pulling your belly button back towards your spine) and then lift your bottom off the floor until your spine is in a straight line (figure a). If this is too easy, lift your arms straight in the air to create more instability, which will make your abs work harder (figure b). To make it even more challenging, rest your legs on a Swiss ball (figure c). Hold for 20-30 seconds, starting with just 3 reps and then slowly increase either how long you hold the position or how many reps you do.  

Figure A

Figure B

Figure C

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

2) TABLE TOP: Start by lying on your back with knees bent. Engage core and slowly raise one leg to a 90 degree angle and then the other leg. Hold legs still at a 90 degree angle for 15 seconds for 3 reps (figure a). Make sure that the weight of your legs is being supported by your abs, not your back muscles – if you feel a strain in your back you are not doing the exercise right! The goal is to engage your abs so that your body will be stable and not move at all when you lift each leg up and let them down again. To make it more challenging, engage your abs/diaphragm and lift your arms off the floor and slightly forward, your head following. This will make sure you are using both the upper and lower core muscles (figure b). 

Figure A

Figure B

 

3) LEG EXTENTIONS: Start by lying on your back with knees bent, legs shoulder width apart. Engage core and then extend one leg out, then the other, almost like you are trying to gently push or roll a large ball away from you. Your core should be engaged the whole time so that when you are kicking your legs out the rest of your body remains perfectly still, this means that the muscles engaged will be isolated to your core so you won’t be putting strain on your hips, back, etc. Start by kicking each leg out five times, then rest, and kick 5 times again. I say ‘kick’ but you aren’t thrusting your legs out, you want the movement to be very slow, smooth, and controlled – trust me, that’s much harder! You can also do this exercise by sliding your leg along the floor rather than lifting it into the air, which can also be quite challenging.

Right Leg Out

Left Leg Out

4) SIDE ARM LIFT: Start by lying on your side, your hip on the floor and propping yourself up on your forearm. Then engage your core and lift your bottom off the floor so that you are supporting yourself on your knee and forearm. Your back will be straight, your hip in line with your shoulder, and you should feel this mostly in your side. Hold for 15 seconds, 3 times on each side. 

 

5) SUPERMAN: Start by lying on your stomach, nose on the floor, your arms reaching up over your head and legs stretching out behind you. Engage your core and lift your arms and legs off the floor – it should almost feel like your abs are sucking your arms and legs in towards your stomach as the core contracts. You should feel your shoulders moving back slightly and your hips rising off the floor a bit (figure a). This is a more complicated exercise, so if you feel a strain in your back STOP and work on some of the other exercises above until your abs are strong enough to do this exercise. Another variation is to lift an opposite arm and leg off the floor, alternating sides, and this can be a bit easier on the back for those with back pain (figure b). 

Figure A

Figure B

 

6) OPPOSITE LEG/ARM LIFTS: Start by crouching on your arms and knees like a table (NOTE: Because hypermobile wrists are weak I highly recommend you don’t ever put your hands flat on the floor when supporting your body weight, instead, make a fist and balance on your knees and fists as shown in figure a). Engage core and lift opposite arm and leg straight out, your arm reaching forward, your leg reaching backward. Alternate sides 5 times. To make it a bit easier to balance, before you lift your arm up straighten your leg and touch your toe to the floor, then lift your arm and leg, this will make the shifting of your weight smoother and safer.You want to keep your back straight throughout, neither sticking your bottom in the air nor hunching your upper back. 

Figure A

Figure B

7) BALANCING ON ONE LEG: Start by standing up, feet shoulder width apart. Lift one leg off the ground, bending at the knee, and balance on the other leg. Engage your core to stabilize yourself. To make it more challenging, close your eyes or lift your arms over your head. Hold for as long as you can, alternating sides. Most sporting goods stores sell 'balance boards' which are also great, though make sure you are close to something stable to hold on to in case you feel you are going to fall over - the last thing your hypermobile joints need is a fall!