advice on physical therapy
 

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!

And should I try to avoid pain altogether when moving now that it seems that I'm healing? Or is it ok to have a little pain when excercising? Just as long as it is within my threshold it won't make the CRPS worse?

Well...this is a hard one.

The bottom line is that YES...you need to keep moving. Best approach is to move and rest in equal parts.

I am one who believes in physical therapy 100%...but it needs to be the right kind of physical therapy. Maybe the massages are not a good thing for you...or maybe there are some other specific exercises that are causing your pain to flare. They aren't using ice, right? That would definitely be flaring up the pain.

Out patient physical therapy is difficult because generally they do try to push patients too fast and too hard. Physical therapy for CRPS needs to be slow and steady...similar to what you are doing on your own but with someone to guide you and keep showing you the progression of those exercises so you keep improving.

I'm honestly worried that your two doctors told you to rest so much...too much resting will be very bad and even though it might seem better in the short term you will regret it later as you lose more and more function. Sounds like you were doing a good job on your own...you definitely need to discuss with the therapist that you have gotten worse after therapy and you need to slow down and take things slower so you don't set yourself back.

It's a really hard balance to find...moving enough to improve but not so much that you set yourself back. Learn your limits, learn how to push them...but pull back before exceeding them.

Take care and I hope things start to get better for you.

You can't avoid pain all together...not with CRPS. The problem is that if you rest and try not to do anything that hurts...you will still hurt and the pain will get worse. Immobilization is one of the worst things for CRPS and it will cause the CRPS to progress faster. Believe me...I was in a wheel chair unable to walk or stand at all for almost a year. It was very hard to get the function back but after a LOT of physical therapy I am able to move around again and walk enough that I could return to work.

It's hard...but you can do it. Like I said before...push your limits but don't surpass them and you will see slow and steady improvement.

My pt said to exercise but if it started to hurt to stop. I hope pt helps you. I had six months of pt and now have a home exercise program. It didn't give me back my full range of motion in my rsd side, but did help a little physcially and mentally. My thoughts are with you. Take care.

Hi stief :)

Sorry it's all so confusing and scary at the moment. I remember feeling like my whole world had been thrown up in the air and scattered. Along with the pain and everything else, it's a terrifying time...hang on there though, because it does get easier to deal with.

I've been through a patch of intensive PT and am now on a much more casual, mostly-myself-at-home basis. I personally found intensive PT made me worse, it made my pain worse overall, and my burning etc symptoms worse. My physio then didnt know anything about crps and her mantra was 'no pain no gain' and she pushed me to do repetitive movements that caused my pain to flare. I've read a lot about CRPS as we all have lol, and I now get that the important thing is to keep generally active and exercise to your CRPS limits. Any movement causes some pain, so of course we have to push through to a certain extent - but any movement or exercise that makes your pain spike badly should be avoided, because exacerbating those really bad pain signals is what we are trying to avoid with the meds and pacing and other things we do to control our symptoms. Slow and steady improvement is the way to go...little and often ;).....it took me two years, but I'm getting there, and my movement is way better than a year ago when I was on crutches and in a wheelchair out of the house.

Now that I am with a better physio, he is leaving it much more to me and that's working a lot better. He has shown me mirror work, and the kind of exercises I need to do to strengthen my weak leg, and I have added in general strengthening (gentle) exercises called Qi Gong, and stretches. If I need some advice or things start going downhill then I can go back to him as needed. You do have to be very disciplined and not let things slide - regular exercise and movement is so important. I have an hour set aside each morning, and I do stretches, then Qi Gong and leg exercises, then self-massage. It's working really well for me - most of the time :winky:

I hope you find a method that works for you and starts to get things under more control. There's a very fine line between overdoing it and not doing enough!! There's nothing easy about this condition...and of course it's different for each one of us. We've all had to find a balance :) Good luck!! Let us know how you get on.

Bram.

My Doctor told me to keep moving! It has helped. Mine started after a bad foot fracture. once the bone healed enough I started Physical therapy. they didnt push me too hard but gave me strengthening exercises to do at home and told me to keep walking. I went back to work and my foot hurt terribly while I was up on it at work then I would rest at home. eventually it got easier. i also used massage therapy ( full body massage to help me relax and foot massage / pedicures which helped me feel better about my foot which was discolored and still had some swelling ) at first massage made it hurt a little worse, then eventually it started making it better. I also have started using diet to help my symptoms. So far it is all working to keep me moving. So, based on my experience I would say keep moving! Don't baby it. Try to walk as normally as possible to keep the strength in your foot, and do your range of motion exercises while relaxing in the evening.

Hello,

Like other's have said this is a very scary thing to deal with. I am sorry you are also suffering with this horrible condition but, I am glad you found us.

Regarding physical therapy: I am also a firm believer in the overall benefits of regular therapy whether that is in formal therapy or at home. That being said there are differences in the type of therapy that a formal PT will provide as many are geared towards improving performance or previous athletic abilities. Once CRPS has set in this form of therapy would likely be less than beneficial and may even cause symptoms to increase or jump to other body parts. If you are going to formal therapy it would be best to discuss specifically Neurorehabilitation Therapy as this is geared towards rehabilitation for those afflicted with nervous system conditions/diseases. This type of therapy is much gentler and therapists providing it generally understand the adverse affects that are often triggered if the sympathetic nervous system is over stimulated during therapy sessions.

Regarding immobilization: unless there is a mechanical reason (ie; broken bone) for the immobilization then this is counter productive for those affected with CRPS. It is imperative to keep the affected limb moving to try to prevent the signals to the brain from increasing pain due to fear and furthering pain of disuse. If you haven't already discussed the benefits of cognitive behavioral therapy with your doctor this would be of great benefit especially while you are still in the early stages and show signs of progress.

My thoughts on massage: I get regular massage but not directly on the areas of acute CRPS pain. Any physical contact to my primary source of CRPS pain is only done by my own hand as I am the only one who can feel what it is doing to my sympathetic nervous system to know when it is causing to much pain. Your peripheral nerves (the ones that sense touch, hot, cold etc.,) are obviously heightened with touch and if this area is stimulated through massage by an unknowing hand this would likely increase pain (I would go through the roof if someone massaged that area.. just the thought makes me want to vomit) and make the rest of your nervous system fire up afterwards which isn't good. It would be better for them to use a mirror and massage the opposite foot while you are watching the mirror, like with desensitization therapy. If you can tolerate touching your CRPS ankle and foot lightly without increasing your overall pain then please keep doing that regularly and lightly.

If you are healed structurally then pool walking, riding a stationary bike, walking on a treadmill and doing isometric exercises regularly will help you in the long run.

Do you have a PM doctor?

First of all. Thank you all for your kind replies and help! :)

I'll respond to everyone individually, and then let you all know where I'm at right now!

:hug:


Yeah. I think the massages were the cause. And the fact that the 2 sessions were so close to eachother. First one in the evening, next one the next morning. And she let me do little exercises for 30 minutes, but that's probably way too much since I hadn't used my foot for 2-3 weeks!

I'm also afraid that she isn't experienced with CRPS patients.

And no, no ice. I know we need to avoid that!

I have been taking contrast baths 4 times a day for a month now. With hot and cold water. My foot often looks better after these, but I've been reading online about them maybe not being good for CRPS...

Not sure what to do but it seems like they're not hurting. I'm gonna try a few days without the contrast baths I think...


Yes. They have putten the empasis on resting too much. I think I never should've gone with the crutches, and just had to start taking it easyer...

Not moving for 2-3 weeks caused me to get a lot of function loss, and it surely didn't help with my blood circulation.

I know you're right about the balance thing. Right now I think it's probably best I keep moving, but try not to burden my foot too much. Keep moving for the blood circulation, and make sure I don't overdo it so my symptoms don't come back...

Thanks! I've decided that for now I'm gonna wait it out and see if I get better over the next two weeks on my own pacing, without the physical therapy. I'm hoping I will heal up, and then be able to start physically therapy again...

:hug:

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!

:hug:

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!

:hug:

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! :hug:

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....:mad::rolleyes:

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...:winky:

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!

:grouphug:

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 :winky: 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 :cool: (quite early on, before I knew much about CRPS, and before this site :rolleyes:) 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.

No worries about offence or anything. I'm very glad to receive you're advice!


I used a lot of ice leading up to my diagnosis. I was dealing with a sprayed ankle then and my physiotherapist wanted me to keep using it as much as possible, so I kept doing that...

All of the doctors I've been to have recommended the contrast baths. For me they haven't increased my pain. They even felt good. I've did them for a month. With warm and cool water. Not to hot, and not to cold.

I feel like I'm making progress, so I'll try not to do anymore this week. And I'm gonna talk to my doctors in the pain clinic about them!


Still not sure what to think about remission / healing. I've read alot of websites that say that most cases of CRPS heal... And others that say it never heals... I'm gonna talk to my doctor about it next friday!

I know that too much rest is not a good thing. And I'm gonna try to do as much as possible, but taking care as to not overdo it and make things worse!

As for physical therapy. Right now I'm doing the excercises at home. Like I said, I think the massage she does to losen up every little part of my foot may be a bit too much. For now I'm gonna build up the swimming. I feel like I'm making progress, so I'm thinking about starting up the PT again next week, and talk to her about the massages.

I haven't seen the puzzles yet. I'll look them up!

Thank you very much for all of your advice! I appreciate it very much! :)

I'll keep everyone updated about my progress here. And I hope things get better for you too! :hug:

Thanks a lot for explaining that to me Bram! :)

I've decided to stop doing the contrast baths, but I will talk to the doctors in the pain clinic about them next friday. I'm allready doing ankle rotations and little stretches every day.

My physiotherapist did a lymphatic drainage in the last session for my sprayed ankle. She told me that they often do these for blood circulation with CRPS. (I was diagnosed with CRPS the day before my last session)

When I took up the PT again she didn't do it again, I think because it wasn't on the prescription from the clinic. I'm gonna talk to the doctors about these too next friday!

And do you have any experience or knowledge with vasodilators as medication for CRPS?

I've read that there's a difference between cold crps and regular crps. And that about 5procent of people who get CRPS get the cold variant. In which case the bodypart gets cold and blue instead of warm and red.

Though I've also read about the 3 stages of CRPS. And that the first stage is the hot stage, and the second is the cold one.

When I got my diagnosis I was in stage 2. But now I'm wondering if there's a difference between stage 2 and cold CRPS? Are the stages just misinformation and do I have the cold variant?

I'm gonna bring it up with the doctors next friday, along with the vasodilators and lymphatic drainage to increase blood circulation!

Haha that didn't sound lectury!!! ;)

Yeah. It seems like a lot of doctors go with a lot of different threatments, and many of them may not be the right way to go... I'm just glad I've got diagnosed so early, and that I am getting proper threatment now!

I'm very glad to get so many replies, advice and support here! Thank you! :)

Steif, this is why we all read so much lol :winky:

The idea of three stages has been abandoned now. CRPS is far too varied and is different for everyone - going by the stages idea, some patients would skip straight to stage 3!!

Hot and cold varieties are also not quite as hard-edged, and the tag of one or another can be confusing when your foot can shoot from sub-zero to fiery in less than a minute...

Lymphatic drainage can be good as long as (like everything) it's done carefully and by someone knowledgeable about CRPS. My PT did it around my knee and showed me how, and it definitely helped with the swelling, which has never been as bad since. I'm not sure about vasodilators, I'd have to read up on that - I remember discussing it with a doc once and we didn't go with it, but I can't remember why, might have just been me and not due to the CRPS!

Yes definitely good to get diagnosed early and treated well. Add to that learning fast :winky: and you have a hopefully winning combo!

Take care,

Bram.

Everything you've all been saying is making more and more sense now. It's terrible how much old misinformation is out there. Reading up in my own language (dutch), the most recent information that looks to come from a good source is already years old... Even information on the sites from our hospitals seems to be outdated!

I've got a lot more reading to do. But I'm glad I'm beginning to make sense of all of it... I've got a lot of things to bring up in my next visit to the hospital. And I know now that the general doctors aren't gonna be of much help to me. I still can't believe that one of them, who's in remission from CRPS in her hand, even put me on crutches and didn't say or recommend anything about keeping me moving... :confused:

I don't think that the treatment they're giving me in the pain clinic is bad. But still, a lot more information would be welcome. Or better said, required... And a doctor or specialist to communicate with on a recurring basis would also be very welcome. I've been there twice and both times it was a different doctor in training! I've had to rely on my general doctors for all of my information. And they don't seem very up to date with their information... Next friday in the pain clinic I'm gonna put my hand on the table and grill em though!

But the good news is that I think my walking is already getting better! The swimming and pool walking today has helped me a lot! Back to the pool tomorrow! :)

Anyways, just wanted to say again how glad I am to have found this place!!!

:grouphug:

http://www.rsdrx.com/rsdpuz4.0/001.htm

Are those the ones you're refferencing to?

If anyone else has good resources (outside of this forum ;)). They're always welcome!

Hi
 

My specialist said to me remember one thing now you have crps
MOVE IT OR LOSE IT Mike NZ

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!).

Yep they are great!