It appears you have not yet Signed Up with our community. To Sign Up for free, please click here....



Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board

  • advice on physical therapy

  • Post New Thread   Reply Reply
    Thread Tools Search this Thread
    Old 11-08-2013, 09:29 AM   #1
    stief303
    Newbie
    (male)
     
    stief303's Avatar
     
    Join Date: Nov 2013
    Posts: 4
    stief303 HB User
    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. Do stretches and small movevements with my foot. Build up biking with little resistance from the hometrainer, build up walking without crutches, but don't overdo that. And then 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?

    Last edited by stief303; 11-08-2013 at 09:48 AM.

     
    Reply With Quote
    Sponsors Lightbulb
       
    Old 11-10-2013, 01:55 PM   #2
    sswallow
    Member
    (female)
     
    sswallow's Avatar
     
    Join Date: Feb 2011
    Location: UK
    Posts: 95
    sswallow HB Usersswallow HB Usersswallow HB Usersswallow HB Usersswallow HB Usersswallow HB Usersswallow HB User
    Re: advice on physical therapy

    We stopped physiotherapy and did pretty much the equivalent of what you've been doing, but every day and sometimes more than once a day - everyone is different - and it worked. It took a long, long time tho'.

     
    Reply With Quote
    The Following User Says Thank You to sswallow For This Useful Post:
    stief303 (11-11-2013)
    Old 11-11-2013, 05:15 AM   #3
    stief303
    Newbie
    (male)
     
    stief303's Avatar
     
    Join Date: Nov 2013
    Posts: 4
    stief303 HB User
    Re: advice on physical therapy

    Quote:
    Originally Posted by sswallow View Post
    We stopped physiotherapy and did pretty much the equivalent of what you've been doing, but every day and sometimes more than once a day - everyone is different - and it worked. It took a long, long time tho'.
    Did what every day? Hometrainer and little movement excercises?

     
    Reply With Quote
    Old 11-11-2013, 05:18 AM   #4
    stief303
    Newbie
    (male)
     
    stief303's Avatar
     
    Join Date: Nov 2013
    Posts: 4
    stief303 HB User
    Re: advice on physical therapy

    Quote:
    Originally Posted by sswallow View Post
    We stopped physiotherapy and did pretty much the equivalent of what you've been doing, but every day and sometimes more than once a day - everyone is different - and it worked. It took a long, long time tho'.
    Did what? Learning to build up moving as much as possible on your own again? Do you still have CRPS?

    Last edited by stief303; 11-11-2013 at 05:21 AM.

     
    Reply With Quote
    Old 11-11-2013, 08:22 AM   #5
    sswallow
    Member
    (female)
     
    sswallow's Avatar
     
    Join Date: Feb 2011
    Location: UK
    Posts: 95
    sswallow HB Usersswallow HB Usersswallow HB Usersswallow HB Usersswallow HB Usersswallow HB Usersswallow HB User
    Re: advice on physical therapy

    'Do you still have CRPS'? - My son doesn't have RSD any more - we're just careful because there are still some residual weaknesses. He was young and apparently it's easier to recover, but he had it from c 8/9 years old to c. 11 and has been clear for 2/3 years now. It is possible that he was misdiagnosed since the hospital treatment was incredibly unproffesional and muddled, but he did have shooting electric extreme pains well beyond the effect of the original accident.

    'Did what? '

    I'm beginning to forget the details, so look back at my past posts, but this is a summary which was essentially 'Learning to build up moving as much as possible on your own again?''

    Initially, he couldn't bring back leg to within about two feet of front leg and had to walk with it dragging behind. The physiotherapy seemed to make it much worse and was torture - so each day, we warmed it for 10 minutes with warm towels, then massaged it gently across the area for 10 minutes with warm oil with lemon Balm in it, then he would start his exercises, which, since he couldn't initially bend his knee, was to imagine moving it 30x, and we also did the same with his ankle (wiggle) and toes (wrapping round finger). He started being able to contract the knee muscles, and then later move them about a mm and we built up every day from there until he could bring his feet together and eventually start walking normally (he now plays proper sport again). We massaged and exercised every day once and if time, did extra exercises every day.

    Like you, we didn't go into the pain area, but did maintain fitness and all areas of movement that did work and keep an eye open for anything that was beginning to degenerate.
    Every day, he would walk the amount he was able to walk back from school, even draggong his leg behind him, as long as it didn't hurt. For him it hurt as soon as he reached a very small incline, so i'd go and get the car and pick him up. We also got a puppy. This gave him the incentive to keep trying and also helped sooth the pain when he stroked him. Interestingly, the day he managed to bring both legs together, the puppy kept sniffing his knee, so something had happened.

    Like you, I took him swimming, more to relax than exercise, but it was soothing.
    Also to soothe the pain, he read and when he started to improve, hypnosis started to take the edge off so he could get to sleep.
    We did used pain killers but they didn't touch the pain, although I tried to use anti inflammatories rather than pain killers to reduce the chances of long term damage.

    At some point, the RSD disappeared and the injury pains were just that- injuries which could be dealt with in the normal way - once or twice the RSD returned briefly - for example, once horse riding, but that was a long time ago and didn't last very long.

    He doesn't ride on a regular basis any more although he's fine for holiday riding, hasn't taken up cycling again and actively avoids it, does swim, walk, run, walk up mountains and play knock about tennis and competitive Rugby and football.
    We still see an osteopath every six months or so to check muscles etc are redeveloping in a balanced way and we have a lot of banadages and support socks on hand ready for injuries

    So for us, this worked, and may work for you since you already seem to be having positive results following this method - good luck.

    Just remembered - he took it upon himself to do quite a lot of work on the exercise cycle at some point too!

    Last edited by sswallow; 11-11-2013 at 08:37 AM. Reason: spellings!

     
    Reply With Quote
    The Following User Says Thank You to sswallow For This Useful Post:
    stief303 (11-12-2013)
    Old 11-11-2013, 09:37 AM   #6
    sswallow
    Member
    (female)
     
    sswallow's Avatar
     
    Join Date: Feb 2011
    Location: UK
    Posts: 95
    sswallow HB Usersswallow HB Usersswallow HB Usersswallow HB Usersswallow HB Usersswallow HB Usersswallow HB User
    Re: advice on physical therapy

    Have also just remembered that he took lots of extra vitamin c ( check on healthalicious for situations where you have to be careful with any supplements) and omegas - in flax oil for him because he is vegetarian. He also became a vegetarian which may or may not be anecdtally significant - I know of one person who had childhood arthritis and a predicted life in a wheel chair only to find it disappeared when she became a vege. However, I was very careful to find foods which had the amino acids for rebuilding collagen, because I think that was also an issue

     
    Reply With Quote
    The Following User Says Thank You to sswallow For This Useful Post:
    stief303 (11-12-2013)
    Old 11-12-2013, 09:54 AM   #7
    stief303
    Newbie
    (male)
     
    stief303's Avatar
     
    Join Date: Nov 2013
    Posts: 4
    stief303 HB User
    Re: advice on physical therapy

    Thanks for the answers! Sounds like you've been through alot, I'm glad your son is doing so well!

    I'm also vegetarian, for more then 15 years now. And I've been taking lots of vitamin C daily since I was diagnosed.

    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.

    I've read that the more physical therapy, the better... And that it's ok to have some pain when exercising, as long as it subsides within 1-2 hours. I've also read that you have to excercise to make your symptoms go away... Still, I'm reluctant to push myself into the pain area, because I know my foot was so swollen last week because of the physiotherapy, and a few days before that because of going out to a gig with my crutches. So I think it's good if I keep building up and don't overdo it.

    Last friday I had the next bier block. I'm up and walking again now without crutches (short necessary walks in the house). I've bought a new hometrainer this weekend and I ride it multiple times a day, carefully though, so I don't overdo it. 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!

    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!

    Last edited by stief303; 11-12-2013 at 09:58 AM.

     
    Reply With Quote
    Old 11-12-2013, 10:36 AM   #8
    sswallow
    Member
    (female)
     
    sswallow's Avatar
     
    Join Date: Feb 2011
    Location: UK
    Posts: 95
    sswallow HB Usersswallow HB Usersswallow HB Usersswallow HB Usersswallow HB Usersswallow HB Usersswallow HB User
    Re: advice on physical therapy

    Soooo pleased it's working for you - I'd say don't give up, but you're not the type who would !

     
    Reply With Quote
    The Following User Says Thank You to sswallow For This Useful Post:
    stief303 (11-12-2013)
    Reply Reply




    Thread Tools Search this Thread
    Search this Thread:

    Advanced Search

    Posting Rules
    You may not post new threads
    You may not post replies
    You may not post attachments
    You may not edit your posts

    BB code is On
    Smilies are On
    [IMG] code is Off
    HTML code is Off
    Trackbacks are Off
    Pingbacks are Off
    Refbacks are Off




    Sign Up Today!

    Ask our community of thousands of members your health questions, and learn from others experiences. Join the conversation!

    I want my free account

    All times are GMT -7. The time now is 05:28 PM.





    © 2020 MH Sub I, LLC dba Internet Brands. All rights reserved.
    Do not copy or redistribute in any form!