Physiotherapy expectations with hypermobility syndromes

Physiotherapy Expectations With Hypermobility Syndromes

Physiotherapy is the treatment of disease, injury, or deformity by physical methods such as exercise, movement, manual therapies and education1. It can be used along side medication and traditional pain management strategies and is often used following surgery too. I often (and quite correctly) see people recommending physiotherapy to treat Hypermobility Syndromes like Ehlers Danlos and Marfan Syndrome2. I do it myself, I do home physio daily and it works really well. That doesn’t mean I’m going to be ‘fixed’ though. This post covers some of the expectations for physiotherapy as well as my personal experiences.

Assumption No.1 ‘Physio cures hypermobility’

I am a massive advocate for physiotherapy and exercise in general but I do not believe that physio can fix hypermobility. What it can do is fix functional, postural and biomechanical problems that arise because of hypermobility3 2.

I’ll try to explain. I have hypermobility. It the most simple sense this makes my range of motion at joints wider than normal. It also makes my shoulders prone to injury and dislocation. I also had a very specific weakness in my rotator cuff / subscapularis which made keeping my shoulder in joint almost impossible. I had very intensive physiotherapy and the muscle weakness is now managed. I say ‘managed’ because it isn’t ‘fixed’, if I slack off it comes back so the exercises are an ongoing management strategy.

It’s still possible to dislocate my shoulder because of hypermobility. Situations where I’m over reaching, lifting heavy things or even leaning at awkward angles. But I no longer have my shoulder simply fall out of joint. The physiotherapy fixed the biomechanical issue so all I’m left with is the hypermobility. It turns, the hypermobility was only responsible for about 10% of my shoulder issues. Because of physiotherapy my shoulder is 90% better.

Here’s where it gets interesting, because us bendie folks have such rubbish proprioception4 and live in pain we seem to just accept these issues as part of EDS. Sometimes we don’t even notice them until a physio finds a specific weak spot and it’s fixed. I had no idea my rotator cuff was so weak and I was massively over-compensating with my pecs and arm muscles. I just assumed my shoulder was dislocating because of hypermobility. In reality it’s hypermobility plus significant muscle weakness.

Assumption No.2 ‘Physiotherapy fixes pain’

This is very much linked in with the above example. Now that the muscle weakness is ‘fixed’ I no longer have the pain of constant shoulder subluxation and upper back & scapula pain. I do still have pain when I injure something and I still have the long-term chronic (background noise) kind of pain. So in that sense the physio I received did fix the pain it set out to. There was never any belief that it would fix ALL of my pain. That said, I’ve now done a lot more physiotherapy and it turns out that a few more of my problems weren’t just hypermobility. My pain in other areas is now much less severe too.

Assumption No.3 ‘Bendie people don’t build muscle properly’

Regarding the actual muscle-building issue, there is a lot of research yet to be done. There is research to suggest people with certain types of Ehlers Danlos Syndrome (particularly Tenascin-X deficiency & Classical5) do have slightly impaired muscle function. I know I’m not alone when I say I feel like I lose muscle much quicker than non-hypermobile people.

Research suggests that the muscle weakness is likely due to muscle dysfunction rather than reduced muscle mass6.Research suggests that hypermobile people tend to have poor muscle control compared to non-bendie people. This is in part because of poor proprioception and part because of repeat injuries7. We tend to have less ‘efficient’ movement patterns and we rely too much on visual feedback as supposed to muscle memory or body-feedback7.

Luckily research also suggests that this can be improved through conditioning, physiotherapy and determination7!

It’s worth bearing in mind that most exercise comes at a cost because of the massively high chance of soft tissue damage from even simple tasks.

Muscle fatigue happens easily for hypermobile people, this can slow down progress8. There is a very delicate balance between muscle-building and over-doing-it. Because of this balance, bendie people often feel like they plateau for a really long time on this journey to fitness. It’s something I hear all the time, ‘I’m going to the gym but I’m not making any progress’ or ‘I had a week out for injury and I’m back to square one’.

This all seems very doom & gloom but actually all the scientifically proven benefits of physical fitness do apply to us too.. We just need to re-think our own ideas about what ‘exercise‘ actually entails. Make sure we’re setting realistic targets and throw in a bit of determination. It is frustrating working so hard to simply stand a little straighter but when you reach your goal all the hard work will have been worth it.

As an Occupational Therapist I can’t give you an exercise program or help you work out why your knee hurts. I will happily leave that to the physiotherapists.

I can help you work out how to fit your physio routine into your daily life. I can teach you to pace yourself and help you stay motivated. I can also help find fitness promoting activities that suit you. Fitness doesn’t have to be found in the gym, it can be anything from dancing to walking in the woods.

I’m just an email/tweet/text away when you get fed up with all the hard work or finally reach your goal and want to share the joy!

As always, comments and shares are welcome.


Reference List

What is physiotherapy? The Chartered Society of Physiotherapy. Accessed March 26, 2017.
Chopra P, Tinkle B, Hamonet C, et al. Pain management in the Ehlers-Danlos syndromes. Am J Med Genet. 2017;175(1):212-219. doi: 10.1002/ajmg.c.31554
Joint hypermobility – Treatment. NHS Choices. Accessed March 26, 2017.
Smith TO, Jerman E, Easton V, et al. Do people with benign joint hypermobility syndrome (BJHS) have reduced joint proprioception? A systematic review and meta-analysis. Rheumatol Int. 2013;33(11):2709-2716. doi: 10.1007/s00296-013-2790-4
Voermans NC, Altenburg TM, Hamel BC, de Haan A, van Engelen BG. Reduced quantitative muscle function in tenascin-X deficient Ehlers-Danlos patients. Neuromuscular Disorders. 2007;17(8):597-602. doi: 10.1016/j.nmd.2007.04.004
Rombaut L, Malfait F, De Wandele I, et al. Muscle mass, muscle strength, functional performance, and physical impairment in women with the hypermobility type of Ehlers-Danlos syndrome. Arthritis Care Res. 2012;64(10):1584-1592. doi: 10.1002/acr.21726
Bilkey W, Baxter T, Kottke F, Mundale M. Muscle formation in Ehlers-Danlos syndrome. Arch Phys Med Rehabil. 1981;62(9):444-448. [PubMed]
Voermans NC, van Alfen N, Pillen S, et al. Neuromuscular involvement in various types of Ehlers-Danlos syndrome. Ann Neurol. 2009;65(6):687-697. doi: 10.1002/ana.21643

4 thoughts on “Physiotherapy Expectations With Hypermobility Syndromes

  1. Really interesting post Jo, physiotherapy has long been a great pain management tool of ours and something I have always recommended to hyper-mobility sufferers. I’d say the biggest issue with Physio is finding a therapist that suits you and understands your pain. I’ve also started recommending bathing after physio as another great pain management solution – companies often run free workshops for OTs and Physios on it’s life changing benefits. I attended this one: based in the Midlands – might be of some interest.

    1. Thank you 🙂 I’m glad you found it interesting. I totally agree. A lot of my work with the Hypermobility Syndromes Association is around educating other healthcare professionals. I think word is getting a round, certainly more than when I was first diagnosed.I’ll definitely take a look at the event. It’s always good to know what’s going on in the wide world 😀

  2. As always another great post. Jo! I am sending this on to my 3 adolescents….they might take notice of you!! Whilst I have deteriorated in every way over the last few years, I believe that I kept my body going and nursing for so long after my first major back op aged 21, through a combination of exercise and yoga. I think I would have been using my wheelchair a lot sooner without it, even though I had no idea in my teens and 20s that so many of my problems were linked to my bendiness or that it was called EDS!

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