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Newly diagnosed with CRPS after ankle surgery help !

Posted , 11 users are following.

colleen_36473
colleen_36473

Hi, does anyone have this and could share how to overcome this. Complex  Neurological Pain Syndrome

i was just diagnosed with early CRPS in my ankle after severe trauma and ankle surgery.

a support group for this would be so helpful ! 

thank you so much!!? 

0 likes, 72 replies

72 Replies

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  • Gogee123
    Gogee123 colleen_36473

    Posted

    FYI. I had a painful EMG on both legs and feet. I heard the results today. NOTHING WRONG!! This is an endless cycle. I have Crps and Perifial Neuropathy. Today I just have Crps. Solo I can't walk. I cant wear socks ( winter is coming) I fall everyday. I could go on. I had my hope trashed in the garbage today!!

    • brenda_savvy
      brenda_savvy Gogee123

      Posted

      Get socks with bamboo fabric !! They are a life saver for me. Seriously.  Very cheap on line.  

      I also had those tests and I will never let anyway do it again. 

    • Gogee123
      Gogee123 brenda_savvy

      Posted

      Thanks. I will look for them. This whole thing has sucked since 2015. Ugh!!!
    • colleen_36473
      colleen_36473 brenda_savvy

      Posted

      Did you use oral or lotion ? 

      My neurology in Colorado recommended 

      I was just wondering. 

      Thank you so much! 

    • colleen_36473
      colleen_36473 Gogee123

      Posted

      I keep trying socks. My sock therapy 

      I leave on each day longer and longer and advance the texture

      Soft to ski socks 

      I am not up to ski socks

      I really liked a pair called medipeds from Walmart 

      They have been awesome and help with neuropathy. 

      Blessings and prayers your way, 

    • colleen_36473
      colleen_36473

      Posted

      Mirror therapy is where you place a mirror between your affected side and good side. The mirror faces the good side and when you move your unaffected extremity you see the mirror as a reflection of being your affected side as healthy like your good side..

      It works well for me. I even get more movement in my ankle looking at the mirror reflection of my good ankle.

      My Pt taught me. It helps me!snd trucks me into thinking my affected ankle is healed.

      I hope I explained well enough.

      Kindest regards and prayers for your healing

      Colleen 

    • Gogee123
      Gogee123 Rusky123

      Posted

      Did you really order?  It's legal in Wi now. I will talk to mynew pain dr first before I order. 

    • Rusky123
      Rusky123 Gogee123

      Posted

      As Brenda said CBD oil. A friend of mine has very advanced Parkinsons and it had got to the stage where he is shaking really badly and cannot swallow. 5 minutes after a drop under the tongue he was almost still and so relaxed he could swallow again.

      I have my new drops but I also have a few severe allergies, processed apples is one for goodness sake, so am plucking up courage to dose myself , with epi-pen in hand. I just keep telling myself that surely a natural substance is much better than these chemically made up drugs. But then again most of the deadliest poisons grow in the garden.

      I have found that after taking advice here I can brush my leg with a powder brush for about 3 seconds, hurts like illywilly but after a week or so I am not scared so much of trying. I have the spray on oils but have started trying to touch my leg to pat them in.

      Still have no idea why CRPS starts or what the medics agree on.

       

    • Rusky123
      Rusky123 Gogee123

      Posted

      I answered afew days ago, still being moderated lol

       

    • Struggling50
      Struggling50 Rusky123

      Posted

      Hello.

      The "experts" have no idea what CRPS is, what causes it, how to treat it. It is frustrating.

      Are you in the USA or Britain?

      There are Neridronate trials about to take place in cities across the USA.

      Neridronate has had great success in treating CRPS in Italy.

      I hope you try the CBD oil. But, I understand your trepidation. I have food and mediation allergies too.

      I hope the CBD works for you, without any problems.

      Take care.

      Tracy

  • Rusky123
    Rusky123 colleen_36473

    Posted

    Colleen I realy hope you feel better soon.

    What is mirror therapy ?. x

  • Rusky123
    Rusky123 colleen_36473

    Posted

    Just looked at mirror therapy, I think it could work, but it is not for me at the moment. I feel like a fat walrus and do not want to look at myself. Put on so much weight since my accident. I used to walk a good few miles a day with my Hungarian Vizsla, now I can walk I just am scared of falling again so only walk a little, my hubby stopped work to look after me and the dog. I think my fear is taking over my life, the pain in my leg is so bad it is starting to take over my life. I am now looking at advice here and brushing my leg with my blusher brush, sheeeesh, it hurts but I am still making the effort 3or 4 times a day.

    It can only get better... right.............?

    • Struggling50
      Struggling50 Rusky123

      Posted

      Hi.

      Mine did get better. It took about a year and a few months of trial and error. But it is better. No pain above a five for a year now. My pain was an 8 and above for a year.

      Now my pain is mostly about a 2. Sometimes a little higher, sometimes no pain just a weird numbness.

      Not a lot of discoloration anymore. Sometimes my foot will burn hot and turn pink, like right now. It is more like a warm stinging pain. Had BBQ sauce at supper and spicy food makes it act up. But not horrible pain just stingy & warm.

      I don't get swelling too often anymore. Only when I have been on my feet a while.

      The spasms have stopped except for a couple of weeks this month a toe would twitch now & again.

      It is a lot better than it was, that is for sure! I can deal with what I have now. I am walking again after a year on crutches. I can go shopping, do my housework, walk outside to feed my kitties.

      I am grateful.

      I hope you find relief soon!

      Gentle hugs.

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