Originally Posted by catra121

I am sort of hesitant to reply to your post...so I want to preface what I am about to say with the statement that we are all unique and different and while what I am about to say is true for ALMOST all RSD/CRPS patients that there are exceptions. But I do want to advise you to proceed with your treatment plan with caution because while there are exceptions...if you are NOT one of them (note the IF because I am not you or your treating doctors) then the things you are doing...even if they seem to help in the short term...could be doing you great damage and cause serious problems in the future.

These are just my opinions so please do not take any offense to what I am about to say...but I wish someone had told me these things when I first started to develop symptoms. I followed many of the same treatments you are doing now (they did not correctly diagnose me until 6 months in) and unfortunately these treatments caused me a lot of damage and SIGNIFICANTLY decreased the chances for me to go into remission.

Originally Posted by catra121

1. Do NOT do the contrast baths anymore and do NOT use ice. Seriously...there are SOME RSD/CRPS patients who report that these do not increase their pain but for almost all it causes either worse pain or can cause spread...even to areas where you do not currently have RSD/CRPS.

Originally Posted by catra121

3. This is hard...but you need to know something and come to terms with it. Your RSD/CRPS will NOT heal. There is no cure. Remission is possible...but the longer you go without PROPER treatment the less your chances are of it. The success of the blocks is a VERY good sign...but you shouldn't jeopardize that success by using ice or taking it too easy and resting too much. The success of the blocks is EVERY reason NOT to stop physical therapy. You have a very short window before your chances for remission decrease significantly so don't be fooled into thinking that if you just take it easy things will get better. This is not an acute injury...it's not a broken bone that needs to rest and heal...it cannot be handled the same way.

Originally Posted by catra121

I know that all sounds very harsh and I don't want to scare you or freak you out...but if I had been correctly diagnosed sooner I would have wanted someone to be honest with me and tell me all these things. I DID all of the things you are doing (ice, resting too much, thinking things would heal if I just did these things)...and they are part of what ruined my chances of getting better and going into remission. I honestly believe that if I had NOT done these things, then when I got the blocks I would have had a better chance of them working at relieving my pain...but I was too far along in the condition for them to help by then.

I wish you nothing but the best and I am very happy to hear you are getting relief from the blocks. I hope you have continued success and can achieve what so many of us long for...remission. Good luck.

I also recommend (if you have not found it already) that you check out the RSD Puzzles. Look it up...there are a lot of good questions and answers in there about RSD/CRPS.

Originally Posted by Brambledog

Good for you steif! That's a great attitude you have, it will help such a lot.

There is a LOT of confusing CRPS info around. We don't always agree on here lol but generally we do - although we all know that what works for one might not work for another, there a some things now proven to be bad for CRPS in the long run, however good they might seem for a while. One of those things is contrast baths, and another is ice. To help with blood circulation in CRPS affected areas, its much better to use stretches, gentle exercises (like ankle rotations etc) and massage if you can tolerate it. Applying extreme temperatures to any CRPS area will just overwork the already misfiring nerves, stress already damaged and poorly-functioning blood vessels and tissue, and will exacerbate the symptoms in time.

When my left foot first got involved in the fun (quite early on, before I knew much about CRPS, and before this site ) I used to put it on my stone cold floor when it burnt up. It felt so nice to have that cold on the burning skin. It seemed to help initially, and when I mentioned it to my doc (ex-doc) she laughed and said I should do whatever I thought helped with the pain... Gradually the burning started lasting longer before the cold quenched it, and later on that day the pain would flare up and it would burn again. I believe the skin got into a cycle of burning more because of the cold. When I'd read more and learnt more about CRPS I stopped, and although I still get burning with it, it's not as bad as it was, and actually eases off quicker if I just elevate my foot and take my thicker sock off. I find if I can keep my foot at a fairly even temperature, it burns less...

Basically, shock and surprise are not good for CRPS tissues. They need gentle regular movement and a range of sensations - but not temperature extremes, because from the symptoms we get you can tell that the symoathetic nerve system in a CRPS area has just gone wrong - hence the sweating, weird hair growth, hot, cold, colour variation etc.

Originally Posted by Brambledog

Sorry if this sounded lectury!!! Lol, just concerned for you. Lots of docs claim to know about CRPS but very few do. You need to be your own advocate and know more than anyone so that you can protect yourself from poor medical 'help' if you encounter it.

Good luck and keep posting

Bram.

Originally Posted by catra121

I also recommend (if you have not found it already) that you check out the RSD Puzzles. Look it up...there are a lot of good questions and answers in there about RSD/CRPS.

Originally Posted by stief303

Hello everyone.

I'm Stief. a 27 year old from Belgium. I've been diagnosed with CRPS stadium 2 about a month ago now. 4-5 weeks earlier I had sprayed my ankle. And now I've got CRPS in my left foot.

I've been to 3 docters now. And they all give me different advice when it comes to physical therapy. And reading up on the internet can be confusing too...

The docter who's treating me told me to rest and relax a lot. To burden my foot as little as possible. To stop visiting my physiotherapist and stop the excercises I was doing there. Stop biking on my hometrainer. To keep my walks short and painfree, and visit the pool 3 times a week for swimming and walking in the water. He prescribed me with daily Miacalcic (calcitonin) injections, and lysomucil (acetylcysteine) 600mg every morning. And to take lots of vitamin C. I've been receiving the injections, and taking the medication for 1 month now.

The next day I had an unrelated problem, and couldn't reach the docter who is treating me. I went to the one closest to where I live in my hometown. She had CRPS in her arm, so I told her my story. She adviced me to get a pair of crutches, and not go swiming and just stop walking all together, because I needed to rest and not burden my foot... She was shocked by the other docter's advice to keep me walking, and that even walking to reach the pool by public transport would be too much. Since the other docter adviced me to burden my foot as little as possible, I followed up on her advice.

2 weeks later I had another cardiovascular scan and the results came out worse. The docter in the hospital told me it was because of me using the crutches, and told me that I needed to keep moving so my blood circulation would get better in my foot. The results of the scan may have been incorrect because of the lower blood circulation by not using my foot anymore.

Back to the docters who were treating me, both of them. They've read the hospital's report and both told me to start moving again. Learn to walk without crutches, but keep those walks short. And start biking again, but without resistance. I asked them about my physiotherapist and they told me not to start up again. The docter who ordered the scan, gave me the same advice like he did before. Short walks when neccesary but don't overdo it, and go swiming and walking in the pool. But now he also told me to start biking again, but with no resistance from the hometrainer. He advised me to try to build up again and get rid of the crutches in 10 days.

After all of this I was confused and decided to contact a good hospital. I expected to consult a docter there, but I only got to speak to a young docter in training. And basically they've just took me in to start treating me immediately. It all goes very fast and I felt they didn't give me good counsulation and wanted me out of the door again very quickly.

They immediately did a bier block. And advised me to start moving as much as I can, but being careful not to go beyond my pain treshold. And to contact my physiotherapist to start excercises again, visiting her 2-3 times a week for sessions.

The next 3 days after the bier block went well. I got to the point that I could bike painfree for thirty minutes quickly, and started walking with my crutches, slowly building up the burden on my foot again. By the third day I was doing short walks without my crutches. My foot looked normal again. No more swealing, no more temperature changes, no more coloring, no more sweating...

Then I went to my physiotherapist (4 days ago). She massaged my foot and loosened everything up. After that the symptoms started to come back, and walking and biking was a lot harder that evening. I could only bike for 5 minutes or the pain would come back. And walking without crutches hurted rapidly now.

The next day I went back for another session. Same massage, which went better and with less pain. After that she let me do some simple exercises by moving and stretching my foot into the directions I'm having trouble with.

Like I said, biking and walking was a lot harder now. And my symptoms started to come back. The first day they were back in full force, and the two next days they lessened alot again. I cancelled my next appointement (which was supposed to be yesterday), and just worked on walking and biking again.

Today I went back to the hospital for the next bier block (which is 1 week after the last). They adviced me to continue visiting my physiotherapist, and to try and keep moving as much as possible, below my pain threshold.

I'm not sure what to do now. I've told them about the symptoms coming back, but they've told me not to take them into account and keep moving...

I feel like I'm getting better. I've only been receiving the injections for a month now. So I'm hoping that they are starting to work now, together with the bier blocks. But I'm afraid of starting up physiotherapy again because it made all the symptoms come back this week.

I know now that it's not good to stop moving all together. But the first two docters made it clear I had to relax a lot, and not to burden my foot too much. My physiotherapist also said that walking would be too much of a burden on my foot right now, and might hamper the healing of the CRPS.

I've also read that pain will make the CRPS worse. So now I'm thinking about leaving the physiotherapist for another week, and see if I get better this week if I don't overdo it. Just try to keep biking with no resistance, try to learn to walk again, but don't overdo that. And hopefully I'll be able to make it to the pool in a few days without using my crutches so I can start swimming! And that the symptoms won't come back!

In the hospital they told me I shouldn't take the symptoms getting worse again into account, and keep going to the physiotherapist...

Can anyone offer their opinions on this? I have been getting better the last 2 weeks, since I started moving again. I'm just afraid that overdoing it might make it worse again. And I'm hoping to fully heal from this!

Originally Posted by catra121

Yep...those are the ones. They haven't been updated in a while but I have found that it is still a good resource for me especially when it comes to some of the symptoms that appear over time other than just the pain. I found many answers regarding some of my crazy symptoms there and when nothing else could be found to cause them I was able to bring in print outs for my doctors and then start the treatments listed on that site (and they worked too!).