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

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!




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...