RSD/CRPS Stories

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Hello, I am interested in anyone who has been diagnosed with RSD if you wouldn't mind sharing your story. How soon after injury you were diagnosed, who diagnosed you and what changes you saw and when. Do you have all symptoms like skin and nail changes and when did this happen ? My dr recons I have it but I'm still not convinced though I do have signs of it and no other explanation as to why I still can't walk five months post ankle break. Thanks for any info or advise. Melanie.

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  • Posted

    Hi. I'm having a hard time with it all.

    I started walking unaided at 5 months. I'm now post op 7 months. One of my legs is slightly a different colour to the other. I'm in a lot of pain at times and walk very slowly with a limp. I can feel the two screws digging in my inner ankle most of the time. Takes me ages to get going when I get out of bed or a chair. My breaks were the worse end of the spectrum my surgeon said. I have good and bad days but must admit I'm mentally struggling these last few days. Since breaking my ankle I've been diagnosed with a bone disease so wonder if that's why I'm struggling with it all. I was a very fit person and my life has just about physically stopped. I'm sixty in May and maybe it's time to slow down haha. I'm keeping positive as we all to and believe this too shall pass... Eventually 🙃

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    • Posted

      Hi. I'm sorry to hear of your latest development.

      I think we are about a month apart from our injuries.

      I started walking unaided at 3.5 months but have not noticed any real progress in the last 2 months.

      I struggle in a morning initially getting mobile, I too noticed my leg has a blue tint to it and my toes are colder than my opposite foot.

      I mentioned this to my physio who said they were thread viens, nothing to worry about, but it's natural to worry.

      Im on my feet 10 hours a day, so would have assumed that my flexibility would have improved, but my ankle remains swollen making squatting, and coming down stairs an issue.

      I too was very active but am reconsidering my future regards hobbies and activities, as they are physical and demanding!

      Im 55 in May and only ever felt 30 till this nonscence happened to me, maybe it's a warning to slow down... Ha ha

      I hope you manage to stay positive and one day, it will all pass.

      Take care

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    • Posted

      Hi Paul.

      It funny you mentioning no improvement in the last two months because that's how I feel too. I just tell myself it's just so slow and I must be improving. It's a right carry on. I've also got a fear of falling and ventured out to the main shopping complex which is busy on my own. The first time on my own in 7 months. I watch every step I take and can sometimes feel myself go off balance. I was glad to get home. I know I have to build up my confidence with walking. Who would have thought eh, something so simple as walking becoming a problem. I have got protruding veins on one leg which I never had before the break and my leg isn't quite the same size as the other leg yet, probably due to limping. I think we all get the swelling as well Paul but my main problem is the pain. I'm the 15th May Paul. 🙂

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    • Posted

      I also am a bit insecure when walking on uneven ground, ramps etc.

      I regularly used to get angry when I couldn't manage basics of walking.

      I have started getting slight pain in my lower leg, but overall is and has been manageable.I am going to pay privately for treatment once I can afford to as my physio, (which is 30 minutes every 3 weeks) just rubs e45 cream into my foot and asks me to balance on a ball board, and stand on 1 leg. I have come to accept that it could take up to 12 months for swelling to reduce. 

      My birthday is 18th May btw 😊

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    • Posted

      Hi Paul !

      It will be interesting to see how we are all going on in a few months. I have a friend and her friend bustered her knee about three years ago and it it did take 18 months to be as near normal. This women is now deceased but was in her late sixties with osteoporosis and I think you get to be much slower than a younger person and the bones would be murder to repair. It's funny how you just bounce back when you are younger. You just be careful Paul on your feet all day, put yourself and your ankle first. 🙂

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    • Posted

      Thanks for your kind comments. I needed to return to work for financial and recovery reasons. I was advised to return doing light duties, part time 😊

      Im in the car hire business and it is very demanding physically and mentally.

      I returned doing 50 hours a week, and just take my time off for physio appointments, then return. I was told by physio that the first week or two back at work would be hard, but I'm constantly tired and in bed at 9pm.

      I was hoping that being on my feet would speed the recovery process up, but this doesn't appear to be the case. I hope you are ok, and yes. I would love an update on how we are all all progressing in a few months.

      Take care

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  • Posted

    Forgot to mention haven't been diagnosed with the above. I find the doctors and physio's look at me blank and they don't know what to think. I don't think they know a great deal about injuries without they have been through a similar thing. I also find most people are ignorant to it all too. They tell you one thing and it never happens how they say. I know I've been to hell and back just like most of us in here. Keep smiling 🙂
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  • Posted

    My doctor diagnosed me at 8 weeks post break and started me on meds. My nails haven't changed but everything else is there. I was very lucky and ended up with an amazing trauma specialist, who has been with me from the beginning of this and he diagnosed me. I am at 11 weeks now, still in a cast. The meds have helped a little. Are you unable to walk because of the pain or something else? Did your doctor start you on medicine?
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    • Posted

      They started me on gabapentin but I didn't see a change and I didn't like the idea of more weight gain. What are you on. I can't walk well more from pain but also stiffness and swelling
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    • Posted

      I am on amitryptolene. I take it at bed time, because it makes you really sleepy and foggy in the beginning. I have seen a little improvement., I wish it was more. Right now, it is just meds, I am still in a cast so PT is out. Hopefully cast will be off Wed and I can start and that will help also.

      Are you still working?

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    • Posted

      I was back to work for a week when I broke my shoulder then I just went back two days ago and last night my Dad died in England. It never seems to end.
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    • Posted

      Oh No! I am so sorry. You have been through so much. I wish I could say something to help, but I know words are just words. You are in my thoughts and prayers ❤.
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    • Posted

      I am so sorry to hear of your Loss, your in my thoughts and prayers, life seems too full sometimes to bear, I hope you find strength and healing.

      I saw your on gabbapentin, the cream works better than the pill, on the base of your spine, it will help you wth the pain. May you find relief soon, take good care Mel. Xo 

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