I am failing to deal with pain of CRPS

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9 months ago I had a CMC arthroplasty with LRTI & at the same time a PIP joint replacement of my middle finger . The support i have had from them surgeon,  physio & occupational therapy team has been second to none. But- the pain I have still continues. I was diagnosed with CRPS at a fairly early stage but cannot believe that CRPS can cause so much pain. My hand is stiff, I cannot make a fist & my thumb area is constantly painful. I feel as though I must have done something to delay the healing. I don't know what to do to ease the pain. It is affecting daily life from morning & very badly at night. The pip replacement was so straight forward - I hardly had pain from it but the arthroplasty is awful. Any suggestions?

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  • Posted

    I am so sorry you are suffering. I am not entirely sure as far as the arthroplasty pain. What symptoms are you having from it? I know for myself and everyone else with CRPS it is imperative to do physical therapy several times a week and every day yourself at home to keep the joint moving and prevent it from becoming stiff. This will also start to provide quite a bit of pain relief believe it or not ! I know it is a real pain in the butt to do it but PLEASE push!! Let me know about the symptoms and maybe I can help😛
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    • Posted

      Thank you for your reply. I have a constant burning & tightness in my thumb area & often the whole of my hand is affected. Touching clothing or bedding makes the pain burn even deeper. I have tried to erase it from my mind & just get on with life but it has such a presence I can't. I use my hand as much as I can & have followed al the guidelines I have been given on physio therapy etc. Nothing is working. I have a really positive attitude to everything but this is different in the way it has hit me. I often think - it's only my hand & other people are going through much bigger traumas. If I could forget about it I would.

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    • Posted

      You need to work on desensitization therapy! Startt with a piece of silk or cotton ball and touch the area softly then work up to more coarse things like Velcro etc. This WILL help immensely. Positive thinking will help reduce the pain your brain is sending to the area. Also a cool wet towel will help the burning but NEVER use ice as it will damage the nerves. If it begins to change from hot to cold use a warm heating pad. God bless you!! And post with any additional questions.
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    • Posted

      Hooptie, are you a medical professional or another sufferer speaking from experience? I have been using the techniques you mentioned ....& putting my hand in cold & then warm water. I will continue with everything I have been advised to use. Another is mirror imaging. I just wish it was all go away & am regretting in many ways having had the surgery done. I know it is a random thing to happen & not the fault of anyone concerned with my treatment. I would just love to turn up to se them one day & say the problem has gone away. Thank you for your input.

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    • Posted

      Kath....Hi.....I was told to do the opposite. warm water for 3 minutes then cold for one minute.  repeat 3 times several times a day. I wonder which is correct.  also mirror imaging and desensitization.  I am still looking for answers to cut the pain.  I'm in physical therapy 4 times a week to get my wrist and hand functioning (no movement yet) and a group physical therapy twice a week at my pain management center which works more on retraining the brain, meditation, the mirror imaging etc.  Today I am getting an elbow brace that will let me manually control the straightening of my arm....to be used 1/2 hour at a time several times a day.  Then next week getting some kind of device to help with my wrist.  To be honest I don't know what is working and what is not.  I am taking a drug called Naltrexone to help with the retraining of pain to the brain????  Who knows when and if it is working!  All I can say is CRPS is very frustrating but you have to remain positive and move forward.  Keep calm and carry on.

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    • Posted

      Hi Lyn, I really appreciate your reply. Crps is the weirdest 'thing' I have ever come across. It's unreal. It seems that everyone affected by it understands but to others it is a total mystery.

      It is so helpful to hear from other people who have experienced it. Thank you for your reply ......it has made me fl sane again. Kath

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  • Posted

    kath23988,

    I'm so, so sorry you are experiencing this nightmare called CRPS. I have been battling it for 4 and a half yrs. Woke up from a back surgery with it and have been searching for relief and answers ever since.

    If you were diagnosis early, your dr should have done some sympathetic nerve blocks. This will sometimes help, other times not so much. It's called "complex" for the very reason, it's so complex and what works for one, does nothing for the next!

    My advise is, NEVER GIVE UP! KEEP FIGHTING AND DOING ALL YOUR DR SAYS. I know it's very discouraging, but hang in there. That's all any of us in this nightmare can do. I just keep believing the answer is just around the corner and that tomorrow has to be better than today! I have a strong faith in Jesus and He is what keeps me going! Without the hope I find in Him, I would loose my mind!

    Hoping and praying you find relief soon.

    Browneyes

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    • Posted

      Brown eyes your reply was very kind- thank you. I hope that you too find some way of dealing with this. Thinking about you. Kath
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  • Posted

    I'm very sorry to hear that you're suffering with this is well I have it in my left hand and it's extremely painful I've been dealing with it for over 2 years 1 year and extreme level of pain I've had the nerve stimulator implanted it does help quite a bit with the pain but it caused another problem the battery pack that they've entered it under my skin just above my buttock area is extremely painful and causing me a lot of pain when I move around it's hard for me to walk any type of distance to get up and down from the couch so was it worth it I don't know I know when I turn it off the pain in my hand is so extreme I can't even think straight also I take the maximum amount of Gabapentin I know that this helps because if I forget to take one I can tell by the pain in my mirror therapy helped me a lot I also did physical therapy for about 6 months 2 times a week and I do stretching exercises at home because my tendons have shrunk. My pain management has a psychologist on staff I'm now seeing him once a week to discuss my struggles and my pain and the fact that my life has changed dramatically because I can no longer work and I'm having a hard time dealing with that no one wants to deal with the fact that this can change your life. The people that love me what I don't understand but I know I can understand the fact that I heard 24/7 and there's nothing that they can do about it. I feel like seeing the psychologist is helping my depression..its a constant fight..i wish you the best.

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  • Posted

    Hi Kath

    I have CRPS in my left foot which has spread to my right one. I injured my foot in 2009, busted the main tendon, which ended with a big op and now CRPS. Had pain management with intravenous pain relief but this did nothing to help. On pregablin as side effects a little better, plus naproxen and co-codamol plus paracetamol when needed in between. Also had the counselling to help me accept that I was now disabled after working all my adult life. I have done that now and have stopped fighting myself and feeling guilty that I can't do the same things as before. I can't walk very far now without a walking stick and if I go out out I go in a wheelchair. I get a lot of the same symptoms as you, burning, tingling, hot,cold and shooting pains in my bones. Knowledge of this is very limited and I think they are doing research to try and help but the biggest thing is to stay calm even when the pain makes you feel like you are alone. Thank god for pages like these. Good luck wendy12365

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  • Posted

    I posted a discussion about CRPS/RSD a few moments ago and I will tell you what my son uses and it has helped him immensly. He takes 2 Ibuprophen which is 400 mg's they're 200mg's a piece and I get him the liquid gel kind as they seem to work faster and better and 2 Benadryl 25mg's a piece and he takes them 3-4 times a day and that's for the swelling around the nerves and also the swelling you can see . Also B-12 3-4 times daily I try to get 1000-1200mg's although I don't think the mg's really matter but I figure 1000 or more is better for what we're working to do which this is supposed to help the nerves heal. He also takes Lyrica a bedtime which is also for the nerves. I do know that we tried a few narcotics and they just don't work at all for the CRPS/RSD My son said it was like he had took absolutely nothing so I don't think Narcotics is the answer for this pain as it pertains to the nerves. I hope this helps and you may have to play with the dosage of the Benadryl according to how well you handle med's All I know is that ever since He woke up one night going to the bathroom and He said it's like everything stopped working he fell face first with crutches still under his arms and couldn't walk I immediately text my Chiropractor who was the first to know what was going on with my son and he ask when the last time my son took the Ibuprophen and Benadryl it had been 4 hours and he said to give him another dose of that because the swelling was pressing on the nerves and that's why he couldn't walk so I gave him 2 of each and within about one and a half hours he was able to walk on his crutches again and that was before we went to see the specialist that my Chiropractor had fixed us up with because this Doctor had been the one my Chiropractor used when he daughter had got ill and that's what she had wrong with her but so many doctors just don't know what CRPS/RSD is and they really don't know what to do since there is no test that just plain comes out and says it's CRPS. I know this is a nightmare that I wouldn't wish on anyone and most people don't understand what it is or how to take what it is but I don't have it myself but I have seen what it has done to my son and he handles pain really well, I've had nerve pain before but different situation Siatica which is painful enough I can only imagiine the pain associated with CRPS/RSD, haven't had it myself but have watched my son and saw what he has went through and some of the things it can cause. God Bless you and you are in my Prayers I hope you find relief soon sweetie.

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