7 weeks ago I by chance had to see a nurse practitioner as all the doctors were fully booked

As I chatted with the lady I was gobsmacked to hear her say 'I only know this much about it because I've had it' I couldn't believe my luck - what are the chances of bumping into someone who has had this let alone beaten it (so to speak). I could tell from the way she talked that this was no placebo game she's defo' been through it you can only tell if you have it in my opinion

Hers was diagnosed by her physiotherapist after not having the ability to walk for nearly 2 years (her legs) it was the persistence and 'forcing' of her physio' that helped her eventually get it to a point where she had full motion and capability back

An amazing story she admitted that there are good days and bad but it's nothing at all like it used to be, seems once your past the 'super pain' your OK

Now I'm a seeing is believing type of person so to have this experience (having met/talked with her) and know that you can recover and beat this thing has been invaluable

For the first two weeks I forced movement where I previously couldn't - my RSD is my hands and arms and the left is swollen and unusable 7/10 days. In that first two weeks things began to improve and again for the following two weeks and let me tell you yes it hurts even more to force past what you think is the worst pain but the more you do the easier it gets

It's been seven weeks and I truly believe that almost constant movement is the answer, my hands/arms still hurt but not as bad and more importantly my left or right don't swell up now at all

If I stop using them for any period of time it's almost like I can feel it rushing back to the pain level it used to be at - so I continue and use them almost non stop

I'm so lucky to have met this person and for her to have shared the story with me, I hope this helps some of you.

The first two weeks were the hardest and the first thing I do when I wake up is constant hand/arm exercises

I believe movement is the key - lots of it, too much of it even. I believe the overuse/movement is somehow managing to remind the brain that there's actually nothing wrong with the limb

I feel like I'm slowly but surely getting my life back, 8 weeks ago I had seriously considered asking them to amputate my left arm the pain was that bad - I'm very lucky to have met this NP

Any questions please ask, also I didn't have to take a break while writing this post - that's amazing too it would have taken me god knows how long a couple of months ago

Be well and believe

There's plenty of research out there that confirms your post. Keep up the moving and keep everyone posted on your progress!! How long have you had RSD?

about two and a half years the doctors/HCP's I'd seen before her just didn't have a clue

I'm lucky, hope you're well!

This is essentially the same experience I had. It took more than 8 weeks...but 8 weeks in I was doing MUCH better than before. Yes the pain is still there, yes it is horrible, yes I have really bad flares from time to time....BUT I am back to walking, back to working full time, and am unbelievably happy to have taken back my life from this RSD monster.

I am very happy that you met this NP. Really...sometimes we can read something over and over but it's really not the same as talking face to face with someone who has been through it. Same goes for the doc...they can tell us we need to move or that we need physical therapy...but they don't really understand what they are asking. They don't KNOW what it really takes to push through the pain we experience.

Good luck to you.

My wife has had RSD now for 10 years. The early stages of RSD were hell on her. Her RSD has changed, she no longer takes pain meds, is in constant pain still, does move around and seems better mentally. But, in the early years those meds were paramount. Those are my observations. I get her moving but if she was to read this post she would disagree.

Thanks for this post and for confirming for me that i am on the right path. I have only had full on RSD in my arm for the past month, so i can only comment from that, but i have found that constant gentle movement of my hand has been the best thing. At first i was too scared to use it and took the rest it approach, esp because i hadnt been diagnosed and was scared to make it worse. then i saw the physio who confirmed that i had it and suggested not going past the pain, but moving until it hurt then stop and rest. then start again if i could.
I have been doing as much as i can, even pushing myself to type with my bad hand. I cant write for long with a pen but typing is fine as long as the tips of my fingers are not too sensitive and i just do a little, then rest.
Im finding alot of info that recomends gentle use. I also found that moving my hand in water was great even before RSD was confirmed. We were in a heatwave here in Australia so i would go to the beach to soak my sore swollen hand and was amazed at how i could move after.
Im really new to this but i feel that a "use it of loose it" approach has helped stablise my pain and hopefully ill beat this crappy condition.

to keeping pain at bay. I've had RSD type 1 since March 95, and my physical therapist told me then that if I didn't move it I would lose it. I found wood carving to keep it moving. I feel lucky with my pt and an early diagnosis. She studied RSD and the docs knew it the first time they saw me. Having said that it is not easy to do, but it is crucial.
Finding something you love to do will help.

...in your ability to adapt and heal. It took me 18 months to walk after my initial dx. 5 years later, a bad flare sent me backwards...but it only took 3 months to walk again. I'm not doing well right now, but I truly believe the brain can learn new ways to make muscles move. Your post is inspiring, so thanks!

It should be noted that everyone is different with RSD.

I had RSD in my foot, went into PT evaluation for Fibro in my neck and shoulders. The evaluator was checking my range of motion in my shoulder and kept telling me to stretch further - come on you can do it - further - further... Just doing the evaluation spread the RSD into my neck and shoulder, where it is still, after several years, MUCH worse than my original site. When I left the evaluation, I sat in my car, and could not use my left arm to close my car door. Something was drastically wrong - my arm would never be the same.

After the RSD was diagnosed in that shoulder, I was put in PT that believed in pushing you past the pain. They had me in so much pain I was vomiting during sessions. I finally quit. I was a LOT worse in my range of motion and pain than when I started weeks and weeks before.

Some people may be able to heal after "pushing past the pain" but other may become worse after this type of thinking.

Just sayin' ....

I have found a compromise of going just to the edge of extreme pain and backing off. I do a routine of stretches an Occupational Therapist developed for me that IS familiar with RSD and works with a well known RSD treatment program. She told me never to work to the point of feeling worse pain, go just to that point, and back off. Eventually, my movement and pain would get better. Given time, it has improved some, but more important to me, it is not worse.

It's been many years now... I have regained about half the range of motion of my frozen shoulder. Am I 100% - no. But, I think if I had continued in the PT that had me vomiting - I would not have the use of my arm that I have today.

RSD is very individualized. For some of us "pushing past the pain" is the wrong thing. Slow and steady wins the race, not hard and painful.

Medications, therapy - all treatments for RSD - vary so much between people.

Today i have been thinking about this post and i have a question.... a newbie question! I have been taking Amitriptyline once a day 50ml. I started at 25ml and up my dose a few days ago. Ive had some good days on it and been able to move my hand fairly pain free for the first time since i got RSD and ive been using it to the max! now pain is creeping through, I imagine if i took the drugs away id be in a spot of trouble right now. My quesion is....

How far do you take the pain relief? today my hand felt almost normal as far as pain goes, except for some resting pain and some odd shooting pain in my fingertips and shoulder. This is great. However, we feel pain for a reason and I have only been using my hand to the point of pain. If i cant feel that pain could i make things worse? Thoughts......