I can’t get a handle of spasms

Generalized dystonia

I can’t get a handle on these spasms and this pain. My shoulder is inflamed because of them. I see pain management Monday and my neurologist Thursday for Botox. Do you have any suggestions on how to approach these appointment?

Background:

Thirteen months ago I strained my neck. It’s since healed 3x and I manage to keep reinjuring it from moving, exercise and now this week I reinjured it again.

I’m in PT and doing literally everything to help. Having an injury I caused is new. Normally my pain is from Dystonia which I was born with. Now it’s from the strain plus the dystonia flaring too. I blame myself for the pain even though I’m practicing self compassion and keep telling myself it was an accident. I keep reassuring myself that it will heal.

Well pain management actually started taking my pain seriously a month ago after I switched providers. Then my doctor decided to prescribe something different since the constipation has been so bad. Except this medication will take 3 months to work if it even does. I’m just supposed to suffer until then without the opioids that finally made me feel functional. They didn’t even send the medication to the pharmacy and he is on vacation. I go to a different pain management doctor in the same practice on Monday. I swear if they do not prescribe me an actual pain medication I don’t know what I’ll do. This pain is breaking my will to live, my soul and squashing any hope for the future.

Like I literally can’t even wear clothes they are so painful. I’ve been homebound with the exception of doctors appointments and a birthday dinner for my dad. I sleep every moment I can just to have a break from the pain. The suffering is so much worse than it’s ever been before. I’m afraid they won’t believe me.

Posted Jun 13, 2026, 11:37 PM UTC

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