A question about pain in muscles.

I haven’t been diagnosed with Parkinsons but am under a review with doctors as other conditions have been ruled out - there isn’t enough evidence for a diagnosis of parkinsons. I have been diagnosed with dystonia which presents as a jagged tremor when moving. I have increasing issues with balance. A clear increase in symptoms in the morning. I am now experiencing these deep musclar pains in fingers, arms and lower legs. I can’t find any reference anywhere to this type of issue. Has anyone experienced this type of problem?

Thanks for sharing what you’re going through, Marie. It sounds really difficult, especially when symptoms are changing and you’re trying to make sense of it all. Dystonia can cause painful muscle cramps and tightening, and some people do experience deep, uncomfortable muscle pain in their hands, arms or legs.

Everyone’s experience is different, though, so it’s really important to keep speaking with your GP about what you’re noticing.

We have some information on muscle cramps and dystonia that you might find helpful:
https://www.parkinsons.org.uk/information/symptoms/motor/muscle-cramps-dystonia

Really hope others in the community can share their experiences too.

The Parkinson’s UK Moderation Team :blue_heart:

why are you not getting a DAT-scan? or is this already scheduled?

No. I’ve seen a neurologist, had Mri scan so motor neurone and MS were ruled out. I’ve been told the symptoms are neurological and if it’s parkinsons it’s the slower progressive form. I have days with few symptoms and days where my hands shake with everything, the balance issue started a few months ago and happens on turning and when walking - I can’t stay in a straight line. I can see a link between stress and emotional reactions. Time will tell but it’s the pains inside my muscles that I’m trying to manage ATM :slight_smile: The info generally available doesn’t go into how symptoms develop or whether rigidity means your muscles feel tight and hurt.

you might have to push to get a DAT-scan. my first neurologist was (still is i suppose) an MS researcher with zero expertise in parkinson’s. he told me for many years that i did not have ALS, MS, parkinson’s, or anything else “serious”. if he had sent me for a DAT-scan at the beginning it would have given me several more years to get ready and attempt to slow the progression with exercise and i could have avoided a lot of tedious time wasting investigations.

don’t assume your neurologist is competent at what you have. they might be competent at a lot of things and still deeply misunderstand what you have.