Welcome, Becca! Can you post a NEW post up top so everyone can see you, and welcome you? We are so happy you found us...though we are sorry it had to be under these circumstances. You've had rsd since you were 8? Oh my goodness, hon! That's awful! How did you get it, where is it, and how are you faring these days? How are you faring in school and with friends, and family, etc. We do have a few members who are in school also with RSD so you've come to the right place.

Great to see you sweetie!

I am not sure, but I think I got RSD from a spider bite on my right ankle. I have it in my right ankle, my right wrist, and now possibly my left ankle. I am doing well in school, mainly because I have teachers and friends who are understanding and helpful. I sprained my left ankle about 3 1/2 weeks ago. It doesn't feel like RSD, but it is showing all regular signs of it (color changes, temperature changes, swelling). It is getting better quickly, and I hope to be off crutches within another week or so.

Thank you for the warm welcome!

Yup, I get the twitching too. Seems to come in phases. When I get towards the end of the "high" of the stellate blocks, I start to get the spontaneous twitching of my deltoid. Uncontrollable and pronounced it is, doesn't hurt, just is totally independant of my control. I have had CRPS II since a shoulder surgery 1 1/2 yrs ago. Things are relatively better after 6 SGB (compared to the pre-SGB days), but no. 7 is around the corner.

I got the air and fan thing going too. Really a bummer b/c I LOVE air conditioning, or used to anyway! Can't really hold a cold can of soda or Starbucks coffee cup too long. Anyone else experience that?

So sorry to read your post but you are obviously in great company and amongst friends here!

I too have the cold and hot thing.... all I can feel is PAIN!!! I haven't been able to tell if something is cold or hot in a long time.

I have to have the air running to keep the humidity down in the house...plus I can't handle the heat.... but it's a vicious circle.... I can't stand the cold either.... Most comfortable for me is above 72 but below 75. It's nearly impossible to keep between those temps.

Right now I have a small (6 inch) fan sitting on the floor running but not pointed at me.... it's just to keep the air in my bedroom from getting to hot over night.... if it get's too cold... it's just close enough to me so that I can reach and turn it off.

As far as muscle twitches... YEP have those too... Sometimes they are visable to the eye... other times they are deep against the bone. I think I have had every muscle in my body twitch, spasm, or cramp at one time or another. Most times they are painful, sometimes just annoying....but ALWAYS twitching, spasming, or cramping some where in my body. It's really weird when my face does this and it hurts too!!!!

I'm at the 5+ year mark... full body with facial, scalp, and internal organ involvement.

I sincerely wish you the best and pray for low to no pain days for everyone!!!

Abbie

Hi there- From what I have heard and experienced, Baclofen works well for twitching and may help relax muscles...
When I get twitching in my face I take a baclofen and that does the trick- most people need to take it for a while before it works. Baclofen pumps are popular for people with MS to control spasms and twitching


Hope that helps

Debbie

hello everyone (((( hugs ))) to u all. i just want to say what a fantastic website this is.It helps so much when you need support and are in pain. so thank you . olga xx

I have been getting some serious muscle twitching/spasms also. It is very weird to feel this. I pray for relief for all of us. No one should suffer like we do.

So sorry your having the spasms. They can be pretty bad at times. I've had rsd now for 10 yrs. At first my foot wouldcurl up so tight and my husband would have to try and get the foot straight again. Now i get them when i take off my brace at night. My doc raised my oxycontin dose from 20 mg. To 80 mgs and this has helped alot.not so happy about taking such a high dose, but it has done wonders for the spasms. I hope you can find something that workes for you.

Sue k

I've had rsd 21 yrs. the first 4 yrs. I jerked almost constantly, pt, surgery , drugs didn't help. massage therapist convinced me to see a chiropractor. He used a hand activator that gently tapped neck. Shockingly I quit for hours. i went every day, then every other day for couple of mnths, finally once a month. It was painful because my other muscles hurt because they had been out of alinment for yrs. but it worked,( I rarely jerk now, sometimes muscle spasms) also made colon and bladder problems.bearable.( don't know how that worked but loved it) my leg was also shorter and a little curled and it made it better too. he retired and i used massage and reflexology but finally saw reg chiro and he keeps me going. I saw him for 6 mths before i let him touch my neck.(if tapping made me quit jerking, popping might make me start back) but it didn't ( still grosses me out when he does it.) I've been seeing him for abt 6 yrs, he even massages neck and back so ins pays for it. I know Chiro isn't for everyone but it has been a miracle for me.

I find Soma (muscle relaxer) and Xanax to be very helpful with the spasms when it gets very violent & won't let up. I take these along with my pain meds.