Thanks for your reply! Yes, it is scary and confusing. I've been meditating alot lately and that has been helping me so much!

I know what you mean about the PT pushing you. She told me to tell her when the massaging hurt so she could stop, and I always did. But at one point she didn't, and told me that this part was too important and that I had to push through it... If I go back I'll be sure not to let her do something like that again! You're right that the PT should probably leave everything up to me as much as possible. So that I don't push my limits.

As I said in my previous post. I believe it's best if I take it a bit slower for now and put off the pysical therapy for a week or 2, and see how things get better if I should practice on my own, within my own limits for now!

I think I know what you mean about babying it. I probably did that a bit too much when I was on crutches.

By now I'm moving around without the crutches, and I'm doing my best to walk as normal as possible. I can't keep up with other people. But I'm taking it easy and I'm definitely improving quickly, but making sure not to overdo it!

And I have been doing my range of motion excercises from physical therapy at home, on my own pace!

Thanks! I'm glad I've found this place too! There don't seem to be many places on the internet where you can go for questions and support!


I've never heard about Neurorehabilitation, but I'll look into it! I'm afraid that my PT may indeed have little experience with CRPS. And the excercises she's given me do indeed seem to be like conventional therapy...

ATM I can't go to a different therapist because I can only travel by public transport and can't walk far. (Only stopped using the crutches for 2 days now).

I'll try to look into a PT who's experienced with CRPS, but I think it may be hard to find one around here. Not sure... It seems hard to find doctors and therapist who know what they're dealing with here. Everywhere I go I get different kind of advice on treatment and physical therapy... I guess there's just too many questions around CRPS...


Thanks! I've read about fear of using it, and I've been making a lot of progress the last few days. I've ditched the crutches and I'm moving around the house again. Though I'm taking it slow because I feel like I may have overdone it a bit the last few days.

I'll look into cognitive behavioral therapy and bring it up with my doctor! Thanks!


I can stand touch and gentle massages. Though the PT tries to losen up every little part of my foot when she's massaging it, and I think that may be the cause of my symptoms and pain getting worse again. I think she's massaging it too deeply. Trying to losen up my foot too much, which makes the nervous system fire up like you say!

Today my foot hurted for the first time when slipping on my shoes, or keeping them on for too long. I probably overdid it the last few days... But normally I can tolerate touch and hot and cold well.

I've also been taking contrast baths 4 times a day on my doctor's advice. I think they may help, but I'm not sure. I've read they may be bad so I think I'll stop doing them for a few days!


I am healed structurally. Both of my general doctors recommended me to stop riding the stationary bike. And one of them recommended me to go pool walking. The other thought that was too much because I still had to walk to the pool, so she put me on crutches... I went with it because the other doctor also put the empasis on relaxing my foot as much as possible, and not trying to burden it too much...

I've been walking without crutches for the last two days. I'm hoping I'll be able to make it to a pool in two days and then I'll start pool walking!

And I've also bought a new stationary bike yesterday!


I went to the pain clinic 2 times now, to receive the bier blocks. The doctor there tells me too move as much as possible. While my other two doctors recommend me too take it easy. And my PT also tells me that walking is actually too much of a burden on my foot right now if I want to heal from the CRPS.

I suppose I need to find a balance between what all they tell me. Rest enough, but keep moving for my blood circulation and to avoid function loss!
Just make sure that I don't overdo it!

So friday I went back to the pain clinic for another bier block. My symptoms are lessening again, so it looks like I'm doing better each week!

I'm also moving without crutches again. Just short walks in the house. I'm gonna keep doing those. But don't walk for too long as I believe that might make my symptoms worse...

In the hospital they advice me to move as much as possible. While my 2 regular doctors want me to burden my foot as little as possible and try to take it easy so it can heal. And my PT also told me that walking is too much of a burden on my foot if I want to heal...

I now believe I should try to find an inbetween. Keep moving to keep up my blood circulation and avoid function loss. But don't overdo it so my symptoms don't come back...

In the hospital they've told me too move as much as possible, and that I shouldn't take my symptoms in accordance. Though that doesn't seem like a good idea to me if I want to heal from this, because in order to heal my symptoms would need to go away... And if I overdo it like last week with the PT, the symptoms seem to come back stronger again... So I think it's best I try to keep moving, but not burden it too much so that my symptoms don't come back now. That seems like the logical thing to do...

Or do the symptoms don't have anything to do with excercising? It would seem logical to me that the symptoms would lessen if I don't overdo it...

And has anyone tried DMSO creme? They've presribed it in the pain clinic, 3 times a day for thirty minutes. It's supposed to help with the pain and swelling, but also heal me because it contains anti-oxidants.

I've stopped physical therapy for now because that's what made my symptoms come back last week. For now I'll stick to short walks when necessary in the house. And riding my stationary bike 3 to 4 times a day with no resistance. And gentle movement excercises in the evening when I'm relaxing. And I'm also hoping to be able to go pool walking a few times a week starting the day after tomorrow!
And I'm also sheduled for another bier block next friday.

And as for the contrast baths I've been taking 4 times a day for the last month, I'm not yet sure what to do with those. I've read both good and bad things about them online now... I don't think they made things worse for me. They're supposed to increase my blood circulation and since my foot looks better after them I'm guessing they work...

Although I'm not sure. I didn't take any yesterday. And today I only took one this morning. My foot looks cold and blue now and I feel like taking one now.. They do feel good I think, but I'm not sure if they help... Maybe I have to try and not take them for a few days in a row and see how that goes...

I hope I can keep moving without my symptoms coming back... I'm hoping that by listening to my body I'm gonna get through this and heal!

I'll let you all know how things go from here!

And again, thank you all for the kind replies! My heart goes out to all of you!

Hello,

If your therapist isn't familiar with CRPS/RSD then ask them if they are familiar with CIPD (Chronic inflammatory demyelinating polyneuropathy) or MS as both have similar symptoms and the physical therapeutic goals are much the same. If your prescription was written for your foot/ankle prior to the diagnosis of CRPS then you would also want to go back to either your PM or orthopedic doctor and have them re-write the prescription to reflect the new diagnosis and its course of treatment with PT.

I would question the doctors who said no to stationary bike as this is the best for of therapy next to pool walking and is much better than using crutches or walking alone when pain/symptoms are an issue. I'm glad you got one.. I actually use mine several times a day and especially use it when pain starts to flare. I know that sounds backwards but it does honestly help me deal with the pain. It started out slow.. only 5-10min with no resistance but I did that every hour on the hour for many weeks until I was able to do a little more. Besides pool walking I rely on my recumbent every day to help with pain and keep my legs and hips moving

I would also question the therapist who suggested that walking is to much of a burden "if you want to heal from CRPS" as you won't heal from it to begin with.. remission yes - cure no. This person doesn't sound very educated and if you can walk.. keep walking that would be a better suggestion especially if the Bier blocks are helping you feel less pain.

Honestly, if I were in your shoes I would write down all the conflicting information and take it to your Pain Management doctor or whomever is treating you for the CRPS and go over each of the items that other doctors are causing confusion on and see if you can't some clarification.

You can also look up central sensitization or cognitive behavior therapy to learn what it means and what the goals of treatment with each are, that way you will understand a little more about how you can help yourself through this.

Your determination will help you greatly in the long run.. stay focused and never give up!

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.

So here goes...

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.

2. Do NOT stop moving and rest too much. Rest and move in equal parts but definitely keep moving. Don't stop therapy. If you are with the wrong therapist or the therapy is too intense then change...but don't stop all together. Don't let yourself get comfortable saying, "It hurts so I'm just going to rest." That is BAD...very bad...and VERY easy to do (I speak from experience). You HAVE to push yourself...just learn your limits and when to stop. It's hard to do...but you have to do this or you risk things getting MUCH worse. Physical therapy exercises should be done all day every day throughout the day. What I did early on when the pain was really bad was do an exercise, rest for an hour, do another exercise, rest for an hour, etc. I did this until I could handle doing multiple exercises together with less rest time between.

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.

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.

Excellently put Catra - I completely missed the bit about contrast baths, I can't believe some numptees still prescribe the darn things to CRPS patients....

I don't think that's harsh - some things are best just said, and stuff like this is too important to skirt around.

Good luck stief, I too wish I'd been told some of the things from this site straight away. The chance son getting the right diagnosis in good time, with the right advice straight away, seem to be so slim with this condition. It is hard to accept, but even on the darkest days, believe that you will get through the worst of times and that things will improve. This condition might not be curable, but you can learn to deal better and better with it and the changes it makes to your life. You can still laugh and love and have fun. Just a bit more carefully...

Take care and keep posting.

Bram.

Thank you all so much for the replies and advice!

So I've done a lot of reading on CRPS now, and I feel sorry for listening to the doctor who put me on crutches. To keep on moving is essential, and not using it for so long caused my foot to freeze up a lot more.

Last friday I had the next bier block. I'm up and walking again now without crutches (short necessary but frequent walks in the house). I've bought a new hometrainer this weekend and I ride it multiple times a day! And today I went pool walking and swimming for the first time! That was so relaxing! And it felt so good to move my foot freely like that!

I wanted to go to the pool by public transport, and missed my first bus. The bus stop is not so far from my house, but it hurt and my foot felt so stressed out. When I came back for the next bus I used 1 of my crutches. All of my other walking in the house I'm now doing completely free of the crutches though! Short walks are going better and better now, so I believe I'll be able to make it to the pool without any crutches soon enough!

The doctor's adviced me to start up physiotherapy again, but I haven't done it yet. Still afraid that the loosening up massages aren't good for me. If things keep getting better like this I may start it up again next week though!

My symptoms seem to be lessening each week. So for now I'll continue doing what I'm doing right now. Biking and lots of swimming, and little movement exercises like I did with my physiotherapist!

As for the contrast baths. I'm still not sure of what to think on that. All of the doctors I've been to seem to recommend it. I'm gonna talk to the doctors in the pain clinic about it next friday. Along with all of my other questions.

Did the baths really make things worse for all of you? Did they hurt? For me they feel good most of the time...

I sorta feel stupid now for blindly trusting the doctors like that. But whenever I went online to read about CRPS I read so many contradicting things. And many scary personal stories, but also positve ones... But reading so many negative things wasn't doing my mental wellbeing much good... I've been meditating for 2-3 times a day for 3 weeks or more steady now. And I'm doing a lot better with the mental aspect! I'm a social animal so being at home for 3 months already now was kinda depressing enough for me with just my sprayed ankle, and not having the CRPS to deal with. I've got a lot less stress now then I had a week or 2 ago, and I'm keeping my spirits up and I'm being positive about everything!

I'll keep you all updated on my progress!

My prescription had been rewritten, and she does know CRPS. Although she is one of the persons who told me that walking is too much of a burden...

Last session I did tell her about the stationary bike and she did recommend it.

I'm just not sure what to think with her because I often feel like she goes with whatever I'm talking about...

The excersises we did last week we're carefull though. So I'm thinking about starting it up again next week. The reactions I had to it scared me though. I think that maybe it's the massage. When she does that she loosens up every little part of my foot, and I'm thinking that may be a little too stimulating...

I know. Using the crutches and stopping all movement was a big mistake. And I got that advice from a doctor who had CRPS in her hand... And because my other doctor also told me to rest as much as possible and not burden my foot, I went with it...


I haven't deeply looked into cognitive behavior therapy yet. I'm just starting to covering the basics now. It takes a lot of reading because there's so much contradicting information out there...

I've been keeping track of all my questions, and I'm gonna write em up and take them with me next friday when I go in for another bier block.

I felt like they're just taking me in for the threatment and they're so rushed and not clear with answers... I'm gonna make sure they take the time to talk with me and clear everything up now though!

Thanks you for all the advice!

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.

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.