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CRPS treatments

Posted , 17 users are following.

candice28651
candice28651

Hi, I have severe CRPS in my right foot/ankle/leg. So far it has been resistant to any of the treatments that have been tried. Today I went to the Walton centre in Liverpool for a bier block however, they were unable to carry out the procedure as when the specialist came to do it he said I have no veins left in my foot. Has anyone had a similar experience. I am obviously devastated as I had been led to believe that this treatment had the best chance of being successful and I am now left wondering what this will mean for me long term. I would really appreciate others sharing their experience of CRPS with me and also what treatments they have found effective.

1 like, 39 replies

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  • carol91733
    carol91733 candice28651

    Posted

    Hi Candice

    I so sad to hear your news, how long have you had CRPS for, like you mine is in my ankle radiating up my leg, what did they say the reason was for no veins, I'm guessing no blood flow??

    Where are you based, there Bath Mineral Hospital, their very good?

    Luv Carol

  • candice28651
    candice28651

    Posted

    Hi Carol I fell off the back of a delivery wagon at the end of June, leaving me needing Orif on my right ankle/leg in Aug I had a bolt removed holding my ankle,fibula & tibia together leaving plate & screws in by then I knew something wasn't right. At the end of September I was diagnosed with severe CRPS after Phyiso notice all my signs pointed to Complex Regional Pain Syndrome. I was at Burnley hospital till December then Walton Pain Centre in Liverpool have taken over. Any information would be really helpful as I feel nobody seems to know much at all. I'm under a Dr Goebel who is very good I'm told, but he gives you loads of papers to read but nothing about other people's thoughts so any experiences you've had or know of would be really appreciated.

    thank you 

  • Rajur
    Rajur candice28651

    Posted

    hi Candice,

    i had CRPS in both feet for 6 years (2007 - 20013). it does not have to be a life sentence. I am over it. google "Reversing Chronic CRPS" for my story of decline and recovery.

    roger 

    • browneyes58
      browneyes58 Rajur

      Posted

      Rajur,

      How do I find your story of recovery? I can't seem yo find it on this site.

      Browneyes

    • maureen99963
      maureen99963 Rajur

      Posted

      Hi Roger, I also had bilateral CRPS in my feet, in 1992. I was able to achieve a remission within 3 months but, it was a slow total recovery and I still have some neuropathy and my feet are sensitive.  The way I thihk I got RSD was an insult to my lumbar spine whilst squatting for two days doing gardening in the Spring. The way I was able to arrest it in the acute stage was to have a chiropractor 'adjust" my lumbar region. He really wacked it and the next day I felt a wamth traveling down the backs of each leg. I got it suddenly and my recovery began suddenly too. It was a HUGE relief- the painful spasms were untenable. I read your story. Thanks for writing it down. I only know one other person who had bilateral CRPS in their feet. One was a dancer in the UK who wrote a book about it called "Dancer off her feet." It gave me such hope to read that book and I know your testimony will help others too. I now wonder about the connection between RSD and FM and Dystonia and EDS. I've been diagnosed with all of those conditions at various points in my life. Some researchers claim they are all connected in one genetic web. Lucky me!

  • yvonne_33997
    yvonne_33997 candice28651

    Posted

    Sorry to hear this Candice . Please don't lose hope . x As for Roger, I think you have to be aware of spreading false hope in the remarks you made . If you've reversed your CRPS , then good for you. However your wording is indicating you can cure .
  • Rajur
    Rajur candice28651

    Posted

    Yvonne,

    before you make judgement as to my "giving false hope", try reading my story first. no magic...my recovery was based on the latest science of CRPS ...and my personal experience learning how to implement it effectively.

    candice asked for anyone with experience with CRPS...i assume she was not only looking for fellow sufferers...but that she would also be interested in recovery stories as well.

    a complete loss of hope is the worst condition to be in for a CRPS patient.

     

    • yvonne_33997
      yvonne_33997 Rajur

      Posted

      Oh but I did !. And there's no judgement on how you personally achieved freedom from CRPS . My angst is in your wording . What works for you will not work for everyone , CRPS is too individualistic . Your being read as " I can mend you " ,just by your choice of wording .
    • andy77456
      andy77456 yvonne_33997

      Posted

      I've got to agree with you on this Yvonne, not everyone will respond to, what seems as a 'miracle' story from the relief of CRPS.

      I just tried to find more stories where by people had found complete relief and were relieved of this horrid condition and each one came back to Roger, surprise surprise! I think there are opportunities for remission if caught early enough but I'd have to call 'bull' on someone who claimed to have cured chronic CRPS after 5 years and also someone who claimed his CRPS spread 'within days'

    • yvonne_33997
      yvonne_33997 andy77456

      Posted

      Be careful on support groups . Attention seekers , benefit claimers ( fakers) , munchausen, scam artists . Also YouTube , people claiming to have a cure , been cured . My husband was all for flying me to a small private clinic in Germany after one guys posting . . Told him, that if one Dr in a small private clinic had a cure, why wouldnt he come forward himself , instead off some random guy posting on YouTube ?. That's when my husband saw sense , he was watching the video with his desperate heart , instead of clear brain . But I imagine desperation driving most people into the wrong paths .
    • andy77456
      andy77456 yvonne_33997

      Posted

      Bless your husband for his desperation in trying to help you, that's very very admirable. My wife is the same and she would do anything to take the pain away.

      Not to retract from what the original poster asked, it is a long road to a form of acceptance and management, I'm not there myself but from the support groups I am in (and it's only two) there are lots of people out there with knowledge and their own individual stories on how they cope, again, it's dependant on that particular person and their CRPS journey but it's comforting to know that people are facing the same path.

      I am booked into the specialist centre, in Bath, at the end of the month and I'm hoping their pain management process will help me live with what I have. For me, I have over 30+ blisters that bleed on each hand and arm that will pour blood, like a tap, from the slightest touch, change in air temp etc so I'm kind of relying on the Bath centre to help.

      Candice, if you're reading this, I'd urge you to get a referral sent from your GP to the centre in Bath, this is all that they focus on. Professor McCabe is a specialist in this field and she will be better placed to answer your questions and provide the appropriate help....assuming you are in the UK.

    • browneyes58
      browneyes58 Rajur

      Posted

      Rajur,

      I believe there is always HOPE! PLEASE TELL ME WHERE TO FIND YOUR STORY AND RECOVERY! I'll do just about anything and try everything!

      Browneyes

  • candice28651
    candice28651

    Posted

    Hi all, thanks so much for your responses. I actually wrote the original post on behalf of my partner, Shane. Roger I will certainly be reading your story as I think it's important to read about success stories as it gives you hope. We are currently seeing Dr goebel at the Walton centre in Liverpool which is also leading research in England so I'm not sure if we would be eligible for a referral to Bath as we are already attending a specialist centre, although I will look into if they could offer anything that Liverpool can't. Shane's CRPS has ruled our lives since his accident and we are trying to make contact with others who are suffering to share advice, tips and stories. I have been looking at hyperbaric oxygen chamber therapy online and although there are no guarentees, it does seem like it may be worth a try as we have nothin to loose. Has anyone had any experience of this?
  • yvonne_33997
    yvonne_33997 candice28651

    Posted

    Shane is lucky to have you Candice . Have you looked at nutrition ?. I read an article regarding white flour as acerbating inflammations . If you havnt there is some great papers done on the benefits . I hope you both have light at the end of you tunnel with regards to steady relief . Andy , Christ, what can I say . You are what sounds like an extreme case . I've read about cases like yours . I'm heartfelt sorry you have this . I'm in Scotland , we have no specialists ,clinics ........we have chanting naked in the hills wafting burning sage !, or that's what it feels like . I have secured myself a place on a pain management group . However Im not convinced , they discuss theories that have long since been shown to be not applicable . So they are not up to date. And they sound rehearsed like a script . Struggle to understand how someone with no pain can remotely determine how people on the highest McGill scalshould live. Rather insensitive aswell. They tried to make pain apear positive .... In an Indian initiation trial / S+M. And then the sentence , picture yourself two years from now ! In big letters hit the screen . I'm in the stages of Valgus , I had only found out that against everything I've done , I've to get a splint to try and control the distortion in my joints. SO I am deteriorating . The woman sitting next to me in the group has MS , in two years she's more likely facing the prospect of a wheelchair. I just don't think they get it . I'm all for positivity , but I'm also for hope and reality. Keeping it real means I'm not going to have a bubble burst, because I don't intend to inflate one . But the pain management team seen to think it's acceptable to give everyone in the room an inflated balloon. I'm back tomorrow , waiting on them bringing out the " can ya say jasus fur me bhoy" service .
    • Bb4veggies
      Bb4veggies yvonne_33997

      Posted

      I loved your description of how crps is being treated in your area of Scotland : chanting, burning sage, etc. That made me smile smile Honestly, I don't know how many of us who suffer with this monstrous disease can 'see ourselves' in two years. I can't see myself two hours from now, not alone two years. I do know that I need to invest in a wheelchair. Some goal, but there it is. I'm so sorry to hear about the comment posted by Roger. I personally would have been crushed by what was written. This summer has been particularly hard on my body; my spirit is broken. I appreciate your incredible strength.

    • carol91733
      carol91733 Bb4veggies

      Posted

      Hiya my name is Carol, I have been struggling for four and a half years with CRPS in my leg / ankle, how ru doing, where are you suffering, have you been suffering long, and how did you get this dreadful, debilitating illness?
    • Bb4veggies
      Bb4veggies carol91733

      Posted

      Hi Carol. Thank you so much for reaching out to me. I am not doing so well, having a bit of a flare up. I was in a car accident in 1997; treated for neck and shoulder spasms head (jaw) injuries , but I never properly healed. While being treated for those issues, CRPS signs and symptoms slowly developed in my R hip (now it's in both), both arms (left arm- carpal tunnel surgery), knees, stomach/abdomen, and these cluster headaches. I cannot afford to see my pain management doctor this month for my knees. It is so expensive for injections/shots- average cost $500(US). 2 weeks ago I was having more than the usual tremors in my neck. That caused a spasm, forcing me a visit to the ED. I received a steroid injection and was treated for usual nausea and vomiting. They also performed another CT scan on stomach after the zofran injection did not stop nausea and vomiting. I am grateful for that spasm because the ER doctor was not too familiar with CRPS/RSD. It got his attention, my friends wink

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