I have PIP and ESA.

[Louiselovesyellow]

I have jerks and posturing on my right side which make it hard to walk. I can’t prep food with heat or use knives. I can’t stand to shower and often need help to wash my hair.

[Lady4]

Sorry to hear you are having such a hard time Louise, is it constant or intermittent and can you pinpoint when it all started?

[Louiselovesyellow in reply to Lady4]

Now it is intermittent, worsening if I move about, talk, have any strong emotion like excitement or anxiety at which point it is a jerk or posture every few seconds. When I am calm it is a jerk/posture every minute or two, sometimes every 5 or 10 minutes on a really good day. It all started on 19th February 2021 with a twitch in my leg every minute or so. I was hospitalised but they said it was a drug complication and to stop a certain drug. I did. But it has steadily worsened and is now my whole leg and arm (right only) sometimes my head as well. Steroids completely stop them all x

[Lady4 in reply to Louiselovesyellow]

Oh dear, I am sorry you are going through such a hard time. In 2022 my son started to have numb legs and spasms randomly, they usually disappeared by 3-5pm (after school finished), they were pretty intense, I video'd the movements but managed to stop them by the distraction technique on one occasion (just curious if it would work).When you say twitch do you mean like a tic, or spasm, as my sons were originally every min or so but no medical intervention and from recollection after Drs call (because he described the pain 10+) I was just told to give him a few extra para/ibro for pain within the 24 hr period.

As its clear the drug you stopped didn't make a difference, did they do any further tests, or just prescribe you Steriods?

[Louiselovesyellow]

I’m sorry to hear about your son 😔. Initially it was like a little leg twitch really. Now, If I’m on my feet it’s a hard stamp or it sticks in a bent up position or straight out. My right arm tremors or bends like a T rex arm and stays like that for up to a minute or sticks out straight in the same way. Sometimes they just jerk. I’ve had an MRI of my head. I’ve had physiotherapy and neuro physiotherapy (that made it worse), I’ve had CBT which had no effect at all. Diazepam reduces the severely of the jerks so that they are less painful. Nerve painkillers and opioids help with the pain. I have other symptoms too - cold water sensations, tingling and numbness, problems word finding and with memory, sudden jerks backwards when I stand, pain in all my joints, difficulty urinating without running a tap and now a lot of gut issues (possibly Crohn’s). I think it’s all related to the nerve problems. Difficultly concentrating, sometimes vision blurs. A lot of things x