Reflex Sympathetic Dystrophy Support Group

I think when we're in truly high pain it becomes very difficult to think of anything other than that pain, and that's OK. We can't beat ourselves up for that... we're already hurting enough that we shouldn't add to it by guilt. I just hope you find the help you need and get better!

gail

Hope everyone is doing better!!

Cindy

I'm really sad to hear that your pain is so high right now. Do you ever have better days or is it always this bad? I never mean to make it sound like a bit of lavender or music will calm pain of a level 8-9. The reason I take the meds that I do take is to try to keep those levels to a minimum and I know you're already taking very strong medications so I don't know the answer for it.

Cindy, I know you've done SO many things, such as multiple attempts at a SCS to get your pain under control a little bit. Have you done much of anything with a pain psychologist? I just can't remember and was trying to brainstorm regarding your situation and something else you might do. I knew a couple of people at another site I use to read who learned biofeedback from a pain psychologist and said that it helped them about 20%, and these people were in very severe disabling pain. If you haven't been through the process of learning biofeedback and other mental imaging techniques maybe they could help a little bit. My memory is just so bad that I can't remember if you've done those things. I'm just trying to come up with something because I don't want you to hurt this much and you have suffered so much.

I hope today is better than when you wrote this (last night?)

Hugs,

gail

Rev.

Rev is right. This is something that I've read can be part of RSD, but I can't remember what it is called. And, going to a physical therapist for mirror therapy might help. I've never had it but have read it's used much more for movement issues than for pain. It would be worth a try if this is concerning you, and I can see why it would. I've not had this myself so can't give you any personal knowledge. Read about mirror therapy and see if your doctor will send you. Also, let us know if it gets better or worse, OK? I hope it gets better.

gail

In our archives there's a topic on Mirror Therapy that I wrote. I included a how-to also.

Trying this will cause you more damage since you'll use your better arm in the mirror. It's your mind and the mirror that allows this to work. After doing this 3 times a day for 10 minutes in a 6 week treatment program I was in I was able to move my toes again after not being able to for years. It began happening after a few sessions and it happened almost without my knowledge. I was hesitant at first, reluctant, but I did find it helpful.

It can add a bit of after pain, but if you are able try this now it may not add extra pain. I cannot be positive on this.

http://mirrorboxtherapy.com/ This site tells a bit about it. Purchasing a box is NOT required. I'm only sharing the link for information purposes, not for any purchases. I use a body mirror for my lower extremity RSD, you could use a half mirror or table top mirror. Or if in PT they will have a version for you to use.

Both Rev and Gail are right.

It only helps with pain itself once one can get through the locking of limbs etc. It is more helpful with assisting with the movement disorders that happen with our illness.

Wishing you the very best,

~Twinkle

Gentle hugs from Cindy

Who is this alien.

I don't expect miracles, just someone who has an open mind about what i have got and how to treat it.

I am so happy