Hi sarah m and welcome to our friendly group.
I'm so sorry you have RSD. It's so good you are able to have p.t. and the desensitizing too. I started that right off, even though it was 4 years before I was diagnosed. I've had this 13 years and now full body. About 5 years ago, I found a great Dr. neurologist, psychiatrist and pharmacologist. See him once a month and he manages my meds. I switched from neurotin to Lyrica and felt I got better pain relief with Lyrica. Was on 3200 mg of neurotin and 400 of Lyrica. About 8 months ago I went off gradually and my electrical jolts, spasms, and shocks did not come back. There is a part called puzzzles that are questions and answers from different patients. I almost went to him when I found out I had RSD, but found a good Dr. here.
My neuro-pychiatrist just build a couple of clinics with hbot in them and I'm going to try the hbot soon. I've talked to a couple people that have a unit in their home and they are off their meds. One is on this forum and one I met at the annual RSDSA meeting a couple months ago here in Arizona. I'll let you know how it goes. Take care, loretta
I had CBT after my parents died for 2 years and helped me a lot. Also had biofeedback for migraine headaches. I still use it for RSD. I just wanted to say a neuro-psychiatrist is a wonderful combination. Like all of, the adjustment from being healthy and active to high pain, disability, for my partially crippled, depression, anxiety , I was helped soooooo much by this Dr. I am on an anti-anxiety med. lorazepam that I feel helps me keep the pain levels down by keeping the sympathetic nervous system calmer. RSD affects the Limbic part of brain, so depression is common with most of us. Antii-depressants are used because of their effectiveness in nerve pain.
I never had any of the blocks, as I was misdiagnosed, and then correctly diagnosed 4 years after the surgery the brought on the RSD the following day.
I did try accupuncture, but couldn't handle the pain.
Massage therapy was something that worked very well for me. I had 150 treatments right along with the p.t. actually just before the p.t. to get further along with the p.t. My private insurance didn't pay for it, but felt it was really helping me and still get massage therapy, but not as often.
Swimming has literallly kept me walking and mobile. My toes started to curl off the floor and my Dr. had me dailey exercise while swimming, working on my toes, and also massage therapist working on my toes and after a few months, they were back touch the floor and walking. I live in Arizona, so a pool is wonderful therapy to keep everying loose and moving.
Welcome again to our family. There is information on a website from a retired Dr. with lots of experience. www.rsdrx.com I don't know how I got this mixed up, but don't know how to get it straightened out. Sorry, Your friend, loretta

I just doing non clinical - the drugs are affecting my judgemnet and coordination quite badly, and I wouldn't want to make a mitake and hurt someone. So I'm non clinical just a couple of hours a day - my manager is brillant and understnading - so she's got me doing a bit of paperwork, admin booking training. Its nice to focus on something else and to feel part of the unit somewhat - but I find it very hard & exhausting- although i wouldn't admit that to anyone at work - i like going and I'm determined to contribute to to our unit some way / anyway I can:)

I'm glad you mentioned the anxiety and pain. Because I feel its more that the normal pain causes anxiety which cause more pain cycle. I feel its got do with the adrenalin levels in the body. So depending in what heighened emotional state is happeneing e.g. angry, stressed, anxious - I finding anything that has to do with that sympathetic stimulation of the nerves has a direct affect. I agree with you the pains their and it worsens

I also wonder about high sugar levels, and caffiene levels. :confused: And also for the female members if their is any sort of link / tie in with menstrual cycle / or any tie in with polycyctic ovarie syndrome (PCOS) - as that is also linked with high adrenalin levels precipiatated by poory controlled sugar levels in the blood or by syndrome x - where insulin is insufficient in the body (i think - can't quite remember).

I'm coming round to the idea of acupunture - i might try that. I was supposed to have the hypnotherpay yeterday but I needed to sort out a problem with the builder - so had to rescheduale - SO still waiting to try that:)

Thank you for your advise - 1 day at a time - will try to.

Thanks for responding - lovely to have your thoughts

Thanks Loretta for your post - and welcoming me - Its much appreciated :)

I'm saddened to hear you have had it so long - I'm glad to hear you seem to have found a variety of ways to combat it. Let me know how you get on with the HBOT.

I looked into it and found out that in the UK it has not been recognised as a viable treatment for RSD although it does work for other things. So even I did get funding I wouldn't get treated in an health comissioned hyoerbaric chamber centre. However I found a charity chamber in the MS Worthing centre that would take me - so I may take a couple of weeks off in July, have a holiday nearby with the hubby and my lovely two dogs and do the HBOT whilst I'm their.

There seems to be alot to be said for the CBT - so I'm quite keen to do that aswell. I never even though about the effect on the limbic system - Have to admit I have been a bit low the last couple of days - thought because - my ankles been bothering me quite a bit (suppose with going back to work) and thats disturbed my sleep quite a bit and some people at work aren't all that understanding - been a bit funny - so finding it hard contending with them - Got any useful tips / comments on how to deal with poeple like that ??

Swimming - totally agree. I do that every morning aswell. After I started the meds and could put some weight though the ankle - I got into the water straight away - made a huge difference - got me mobile - although the orthopeadic surgeon was mortified :)- , I dont understand why it works - something about how the water goes over the skin / area / legs - all at the same time - somehow helps the nerves - calms them - and for me it doesn't increase pain (whereas the desenstizing exercises can for me a bit). I find it wonderful - and the only day I didn't go last week the RSD redness went all the way up behind my knee and thigh - that has never happened before - I hope it was just because I missed the swim and not because its spreading:confused: Has n't happened since:)

Anyway- thanks you for your info and advice - its nice to be able to talk to poeple who know so much about it. I'll take check out that website.

thanks again Sarah :hug: