RSD/CRPS type 1

[jshmro]

Does anyone know if biofeedback really works for RSD, and has anyone heard anything about photon therapy for RSD-thin skin skin lesions (stage 3 RSD)  and pain management? Thanks.

[SBF]

Realize answer comes long time after the question, new to MedHelp and acquired RSD of right (dominant) hand, aggressively attacked remobilization, hydrotherapy, massage and tried convention occupational therapy (desensitization and strength exercises seemed effective) very early in course of disease.  TENS unit of little value, after few days had to set the stim so high entire hand twitching at level necessary to would block pain.  Hot-Cold stimulation made worse, heat alone helped.  Constant exercise, squeezing silly balls, hurts but necessary.  Immobilization even over night was bad idea, set back progress, developed position where hand was protected and learned to stay put.

Biofeedback techniques learned from expert staff do work, financially able 10 of the 20 recommended sessions, REALLY wanted it and easily managed control of pulse/BP, became good at entering Theta state (fairly easily) with visualization favorite "theme" and stops pain in it's tracks!!  IF you catch it early enough!  Prior meditation work helps, I can actually feel electrical pulses going right to left brain (weird, huh?) when process is working.  So visualize that happening and usually (>80% time?) works.  

Only down side is at night, cannot convince brain to do the work while I sleep and sometimes wake to excruciating pain in hand or toes and feet.  Occasionally use combo of heating pad & biofeedback and do get back to sleep, but usually up for hours and must take pain med+gabapentin+diazepam for relief.   If any questions, be happy to elaborate, hand is stiff every morning (14 months post onset) and have to "work it out", fingers especially tire easily, need frequent stretching, rubbing... not perfect but able to do college work and have the "rescue" meds when can't take it anymore.  

Clarity is more important than pain, have decided is new tolerable level and doesn't bother too much unless bump hand or feet, that can drop me to the floor, wear boots alot to protect toes from bumps or squishes (ARRRRGH!) Hurts to even consider it!.

[Toomanyadvil]

Hi jshmro

          Bio feedback can be very helpul in treating RDS symtoms. But you have to be motivated do use techniques like biofeedback.
If I am thinking of the correct treatment, Biofeedback helps teach you through deep relaxation and the use of machines (to indicate things body temperature) to change your blood flow, increaing circulation to certain extremeties which are affected lowering pain. I dont have RSD so have no personal experience with it myself. But the informaton I have read has said that with the proper motivation and practice it can be a very successful techinique.

Pain Management is defenitly an option for most RSD sufferers as the pain and burning can be extreamily severe.
Have you spoken to your DR about being referred to PM?
A PM DR specializes in all the different medications and procedures know to lower pain. Many we wouldnt imagine having a use to lower pain nueropathically like antidepressants and anticonculsants.
There are also non steroidal medications called NSAIDS, that lower inflamation that have been used in the treatment of RSD. There is also of course a benefit to use opioids if the pain is severe enough to interfere with your functioning and some benzodiasapines that can help with spasms.

Have you tried Physical therapy. In RSD its really important that you continue to use the exrementies as normally as possible.
Pool therapy and pressure messages can be really helpful to RSD sufferers like yourslef and anyone experiencing pain in there extremties, joints and muscles.

There are other treatments I dont know much about but SBF seems to have alot of experience in trying many different things for RSD.

I hope your able to find great success in whatever treatments you and your DR choose.
TMA