I read quite a bit of this and never came across this particular issue with you. Sorry if I missed it but I wanted to ask if you had a lot of edema or swelling of a limb associated with your CRPS and if so how did the treaments affect it?

Thank you for your detailed description of your journey.

Denise

When I have flare ups I do get severe swelling sometimes. This has actually been reduced since the tDCS treatments...and the swelling really is only with the worst flare ups now. My primary treatment with any kind of swelling is to take a hot bath with Epsom salts...but as with many symptoms I find things like the swelling, temperature changes, color changes, etc have been reduced since the tDCS treatments.

Thank you for letting me know your response to that. I may try it.

The swelling and edema in my entire right leg is severe and relentless. It swells worse when I take a warm bath in epsom salts. I don't understand. It also seems much more affected by gravity than most other people with CRPS edema. My ankle for example can double in size from when I get up in the morning and stand or walk for even a few minutes. This degee of edema in my right leg and upper pelvic ara has been my outlier for this disease since the beginning. I had no known inciting event. It threw them off the correct diagnosis for a long time. Valuable time.

Anyway, thanks. Sorry to ramble.

No problem...the tDCS didn't help me a lot with "pain" per se...but it helped a lot of my other symptoms and I have flare ups much less often than I used to (which I guess IS helping with the pain in a round about sort of way). The way I see it...it's definitely worth a shot.

Take care and good luck!

tdcs device
 

[QUOTE=ballerina;826040]My journey is very similar to other folks with CRPS. My options, however, may be more limited than many due to drug sensitivities. Ketamine is out of the question because I am allergic to it. I have grown weary of the tired advice that my pain needs to be better managed by drugs. I made the decision early on to heed the warning of research regarding Narcotics only increasing neuropathic pain long term.


hey how are you doing? hopefully your feeling better, i was wondering what device you are using i had a concussion and still have headaches I've been use the david delight pro from canada is that the same thing? thanks

This looks very interesting - I'm definitely bookmarking this. My daughter also tried Graded Motor Imagery and Mirror Therapy, but only got very minimal results with a LOT of time, so she stopped. The GMI started to be counter-productive after a few months, though, because it was so boring and frustrating for her, so she stopped. We had an interesting thing happen with Mirror Therapy, though - it increased mobility in the foot where the RSD started.

Thank you for sharing this with us! I might try it, because I have fibromyalgia.

Nice other options to try. Mirror therapy I tried and still doing both ,one for my rsd affected limb and the other to make and reset my mind to look ok and happy.
Works this way ,I take pictures of myself daily and also,fix my hair ,make up and try to be the way as I was before ,that mirror that I see, I only see a happy person ,many times my smiles are fake on my pictures but when I saw then I can't remember which ones where real on fake ,I focus on the happy person and that's keep me going throughout the day .:grouphug: but sure anything new and relief method are welcome ,thanks for the inputs and help ,loving. Hugs ,Jesika .:grouphug::grouphug:

There are so many "little" things that we can do that help. I like your smiling idea. I've heard that even fake laughing can make some positive chemical changes in your body, but I've been too embarrassed to try it!

What I like to do is always have flowers that I can see. Trader Joe's has really good prices on flowers. Beauty is really important to me! I also love music and hope that I can start playing my harp again soon. In the meantime, I've found some really lovely piano music that I play before going to bed.

Thanks for sharing :grouphug:

Betsykk
 

Betsykk,

My name is Billy Alexander and my 21 yr old daughter has CRPS in her l leg for about 10 months now. She's had 10 lumbar sympathetic blocks with near 100% relief each time but its been several months now and her pain is quite intense now. I would love to talk to you about ketamine as you mentioned it didn't work the first time but after going off meds it worked well the second and subsequent times. I have'nt had enough posts to pm you yet so not sure how but maybe you could pm me? Thank you so much.

Billy

Welcome billycalexander. :Tip-Hat:

Someone will be along to help.