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Ehlers Danlos hypermobility syndrome

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I am female and 30, dignosed with Eds hypermobility type 3. Having hms obviously increases the chance of muscle imbalances. Since i was young (8yrs approx) until 21yrs I experienced sublacations of the hip. In youth both hips effected then the last time at 21 - (by this time it was a rare event) i beleive in was the right one (although not certain of it). I have since struggled with lots of pains, have a twist (anticlockwise) in my pelvis, knees that sit 50° inwardly, and sciatic pain too. My best relief is deep tissue but I would like to do anything else i can to improve things.

I have tight muscles both sides but *i feel no pain in the tight muscles on left hand side* except in neck. My right had side feels totally different like all the muscles are screaming at me to stretch them and often very ucomfortable

These muscles are
a glute(s) (unsure which)
Vastas lat + med
a hamstring(s) (not sure which)
Tib Ant
And an area running vertically from slightly above and behind the ankle bone all the way up th outside edge of tibia (but slightly behind)

My shoes are high quality and very supportive... Iam not sure if streching these muscles although can sometimes give short term relief is not exaserbating the problem long term. I can Also feel more tissue around my pe posterier edge of tibia area on my right side. Could these muscle be protecting my sciatic? What can I do? - Apart from have deep tissue massage every week! Also became a Pilates instructor to try to beat this but only doing part time as also struggling with m.e.

Category: Rheumatologist

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Category: Internal Medicine Specialist
Dr. Bimlesh Dhar Pandey is online now

Expert:  Dr. Bimlesh Dhar Pandey replied 4 Days.


Thank you for choosing DoctorSpring.

I would recommend you to rule out any inflammatory condition which may go unnoticed for years and internal tissue damage assessment.

I have few recommendations here :

A. Get Echo to rule out any cardiac involvement. (If not done already)
B. Get HLA B 27 by PCR with ESR and CRP all are blood test for ruling out inflammatory condition which goes hand in hand with this disease.
The third is limitation of joint and soft tissue damage which can assessed only by clinical examination.

One thing is clear do mid range exercises and movement to reduce and control damage. For recovery Vit d and Vit B12 status should be good otherwise healing is difficult if any injury occurs.

Now it does concerns me when you say the muscle needs to stretched and it feels tight. I hope you know that you SHOULD NOT overwork your muscles in view of HMS. No repetitie exercises, no bad postures. Muscles do not need stretching unless you are into weightlifting. They just dont need any attention ! Just take care of the joints, not muscles. Mid range movements, non repetitive. That should help.

Hope this helps
Feel free to ask followups.
Thank you

Patient replied :

Thank you, I will do these things... Any idea why my muscles are 'screaming'at me to stretch them? Why the sensation of tightness should feel so different depending on side? And do you think my sciatic is involved in this lop sided pain? (it travels down right side from back into foot and is releived by piriformis stretch). I understand that I should stay withing a normal range but the only real pain release (apart from having a massage - self massage never works as i am not strong enough and all these muscles are SOLID!) is to stretch....
Thank you for your time

P.s. heat and hot water esp also helps but I already do all that as much as i can..

Expert:  Dr. Bimlesh Dhar Pandey replied 3 Days.

The muscles screaming to be stretched could be due a underlying inflammatory condition. Please get the above mentioned tests done in consult with your Doctor. Another factor is the pleasure feedback mechanism. The more u stretch it, the more you will feel the need to. Just abstain from it for a week or so and you will be all better.

Yes the pain do seem to be sciatica. Make sure you are adopting a good posture while sitting and standing. If the pain is sever you can take an OTC pain med for 2-3 days. It should resolve by itsown soon

Hope this helps
Thank you

Dr. Bimlesh Dhar Pandey
Category: Internal Medicine Specialist
Senior Residency: Rhematology, All India Institute of Medical Schiences, New Delhi, 2009
Post Graduate, Junior Residency: MD (Internal Medicine), Rajendra Institute of Medical Sciences, Jharkhand, 2006
Residency: Physiology, Institute of Medical Science, Banaras Hindu University, Varanasi, 2003
Internship: Government Medical College, Trichur, 2001
Medical School: MBBS, Calicut University, 2001
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