I was diagnosed with HSD ( hypermobile spectrum disorder) or hEDS ( hyper mobile ehlers danlos syndrome) some years before being diagnosed with systemic mastocystosis. I had tingling arms and hands for some years and associated it with the hypermobility. I had some advice from a physio on exercising safely and strengthening muscles around joint to keep them stable. His name is Jason Parry and he works both privately and in the specialist EDS hypermobility unit at university college hospital in london.. very helpful. He recommended doing Tai Chi and that has been very successful in reducing my problems. Are you able to get to london to see mr Parry?
EDS hypermobily and MCAS / Mastocytosis seem to be associated . The support group for EDS has just sent out an email newsletter about it. I suggest you join .
Are you getting treatment for mast cell issues.? To my surprise the treatment for that has also reduced my joint snd muscle pain.
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