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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.
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..
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