Update...and to new members with CRPS/RSD

Hi all - and first a quick update on me and my ketamine infusion...or not infusion as turned out to be the case. It had to be stopped after I went into one of my dystonic spasms/attacks...this one affected my entire body, and lasted close to 24 hours. They filled me with muscle relaxers and pain meds...and I lost all sense of time...have no memory of at least one day, maybe two.

Am allowed to go home today, but have to see my PM next week to try to work out where we are at. I've never had spasms this bad, certainly not this long lasting, and it frightens me.

Second - notice that we have a couple of new members with CRPS/RSD ... I will try to catch up with you (and everyone else) over the next few days. Hands are still very stiff and wanting to clench into fists (imagine the fun the nurses had trying to measure my BP and sats...hands in fists, arms locked behind my back, my legs wouldn't stop twitching... :-()

Hope everyone else is doing okay.

Laura

Laura,…we look forward to you getting back here again…but do feel free to take all the time you need. Sorry things did not go well and that you did not get to finish the treatment…we all were hoping differently.

I will catch up with you later….get some rest if that is possible.

SE

Hi Laura I'm so sorry that you had such bad spasms, and couldn't finish the infusions. You take care of yourself, and we will be here when you're feeling up to posting. Please let us know what your PM doctor says. Love ya my friend.

love and hugs
Loretta

So sorry this didn't work for you, Laura. I hope you find something that does, and soon!

Welcome 62ltl to the CP forum and I hope you will start a introduction post so everyone can welcome you and learn some things about you and your journey with CP. Glad you joined and you will find a awesome group of people here who each has a story to tell and who are willing to support and share in the hope's their experiences can help others.

Hi Laura,

Sorry the ketamine didn't work out for you. I had it once for one of my surgeries and it gave me hallucinations, itching, inability to remember words, and amnesia for 4 days. It's on my long list of med reactions that I carry with me.

I don't have CPRS, but I read your posts hoping you will come up with something I can try for central cord syndrome and the painful whole body spasms and dystonia. It took me a half hour of stretching in bed to be able to get up to the bathroom. Not sure if it's getting worse or just the weather, 15 below this morning.

Keep posting! I don't tolerate or don't get any help from any of the muscle relaxers I've tried, so I'm reading all the posts to see what others are doing.

Best wishes!