Toes with minds of their own!

[PaddyPop]

Hi all

Has anyone had toes that separate and bend in the wrong way for no apparent reason?

[guineapignot]

Good morning

I sure have !! Toes and fingers. First episode was pre diagnosis( cryoglobulmic vasculitis Feb 2018)

When without warning my fingers on right hand crossed over each other in a spasm lasting 5/6 mins. Not really painful

But uncomfortable!! This happened 3 or 4 further times in next 6 months. After diagnosis I experienced many episodes of cramp in arms legs and toes . Particularly when my big toe on right foot would go into a spasm and involuntarily bend up towards me ... again not painful but very uncomfortable ... after this I was immediately taken off Methotrexate meds and replaced by mycophenolate which I currently take. The consultant takes note but does not really comment on these” elements” other than they all relate to symptoms of my disease. I now note down every change or instance of possible symptoms / side effects and show the cons. I hope you get some answers, the trouble with these horrible diseases we have is that we are still all learning as are our advisors so sites like this and the people who co ordinate and counsel

Us are invaluable !!!! Good luck and keep noting and sharing. It all Melos . Best wishes

Alan

[Kentish_Man in reply to guineapignot]

I have as well. My fingers were wrongly diagnosed as 'trigger finger'. After several operations they are now worse then before !! It is quite random the way it happens. I can go for several weeks with nothing then all goes to pot as I get it in fingers and toes without any particular pattern.

[guineapignot in reply to Kentish_Man]

Yes that is my experience but in hindsight has come just prior / during a flare up . After the episode passes I am even more drained of energy than usual.there are so many aspects to this disease!!! I am also confused as to what are SYMPTOMS and which areSIDE EFFECTS!! .... keeping good notes is helping to establish a pattern and that helps me to plan and avoid things ... as far as possible !! Good luck to you .... no point in using hackneyed phrases here like ....” keep your fingers crossed”!!!! Lol.... just good luck

[Mooka in reply to guineapignot]

Yes I have it too. The toe next to my big toe jigs around all the time. I also get the cramps in my legs, feet and my big toe stands up straight as you describe. Can get painful and is difficult to get straight again. Would be great if someone has a solution to this.

[PaddyPop in reply to guineapignot]

My toes do that without prompting!

[PaddyPop in reply to guineapignot]

My toes do that without prompting!

[michichgo]

Boy do I ever! It's infrequent now but when I take prednisone, the toe and foot spasms are crazy-bad!

I can sometimes get temporary relief by standing-up, upon my toes, rising up and down a half dozen times.

Best wishes for good health.

Michele

[DazVin]

Oh yes....toes are funny as I have to really concentrate to bend them. All due to peripheral neuropathy caused by vasculitis