CRPS at a lost for words

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I'm new here and but not new to the pain i feel. I am now finding out that all this pain is not in my head. However my ortho doctor has told me at this point she is not sure what to do. I have be prescribed amitriptylne which did nothing. I didnt dare ask for any pain meds even though the pain is unbareable most days. My doctor now want to send me to VCU medical center in Richmond, Va. or to Johns Hopkins MC in Baltimore Maryland. After going online to research about both facilities I think Johns Hopkins may be better.

Some of the pain i am having is not what seems to be the normal symptoms. I have a hard time wearing a shoe because it feels like my foot is being crushed. I do have the burning and the sharp pains though. I had a buion removed in 2012 and a screw put in my big toe still had problems. July of 2017 I broke that same big toe with the screw in it, needless to say there is sever pain throughout my entire foot. I also have a problem with my sciatic nerve which runs down my left side and the pain is also now in my right foot as well. in November of2016 i had my c4,c5,and c6 repaired. I am having the most difficult time finding doctors that will listen to me when i say i real my pain is. I have not worked since june of 2016 its just impossible for me to stand for more than 30 mins to an hour. I currently have a boot on my left foot because the pain in that foot is worse and i walk with a cane. I hate that others are suffering from this but i am relieved to know that i am not crazy and not alone. If anyone has any info that may be helpful to me i welcome it. My husband has been my rock but he cant fully grasp the pain i am in. It has made me so depressed and withdrawn.. This has really affected my whole left side because i have had 3 rotator cuff surgeries, carpal tunnel, left trigger thumb, and tendon sheath release and to top it off I'm left handed. Thank you for reading and letting me share.

1 like, 17 replies

17 Replies

  • Posted

    Hello. Just wanted you to know I read your post. You are not alone. Don't despair. I will leave a longer reply in a while. Busy right now. But there is hope. I'll get with you in a bit.

    Gentle hugs,


  • Posted

    Hello, I know what you are going thru. A lot of DR don't want patients that have chronic pain. Have you seen a Neurologist or pain clinic? I have had crps in both legs for several years and now have small fiber neuropathy in both feet. since the sfn diagnosis, 2 years ago I have been unable to stand or walk more than a minute or so. You may want to see a neuro Dr and ask about this. The small fiber neuropathy pain is constant and severe with even the slightest touch is unbearable. the pain is like all the skin has been burnt off my feet with stabbing shooting pains that never stops. Sound familiar? The diagnosis is made with lab work and a skin biopsy. The only meds that have helped me are pain meds and lidocaine cream. good luck

    • Posted

      Thank you...i will be attending John Hopkins soon because the neurologist doesn't know what else to do. No one will give me anything for pain. They all want to complain about opioid addiction which i know is real but not everyone is looking to get high.

  • Posted

    So sorry to hear you are going thru this. I have it on the entire left side of my body. It took 21/2 years to diagnose. Many test and doctors. No injuries so it didn't make sense to any of them. They finally figured out it was caused from going thru chemo. I have tried several different meds and not much helps. I take lomital it is an anticonvulsant, Norco 10s ibuprofen and robaxin. Does help a lot but enough to take the edge off. From what I understand going to a painmanagment specialist is the best way to get the help you need. I live in a very rural area so this is hard for me. I have the cold version so I live with my heating pad all the time. The left side of my back is the worst. I would say listen to the docs try different meds. You never know what will help and for sure get some pain meds. It is not in your head. We have all thought that. Pain does cause depression not the other way around. I really hope you can find the right doc so you can get the help you need. Sending hugs. Stay strong and positive. Deborah


    • Posted

      Bless your heart thank you for sharing your story with me. I'm sorry for your pain and wish you well and some relief in the near future.

    • Posted

      Thank you sweetie. I hope you fine the answers you need. We are here for each other. So ask away. Sending gentle hugs, Deborah
  • Posted

    Hey, you poor thing, I've had chronic CRPS for just over 25yrs and over time the symptoms can fluctuate but the one thing that never changes is the pain, it's always there like a little growth sitting on your shoulder, some days it's easier to ignore than others.  There's not a lot that can be done once or gets a hold but the best thing to deal with it is distraction, when that pain is raging then you have to put on your boots and fight. Here's what works for me.

    1. learn a quick relaxation technique, holding those muscles tight just creates more pain and makes you exhausted.

    2 I imagine my pain as a piece of paper in my head and I squash it, stamp on it and kick it into the corner of my head I know I have a strange head I don't let that pain out for anything.

    3.if someone's with you get them to talk to you ask you stupid questions, they must push you for answers you just want to tell them to buzz off but if you fight the pain and answers it helps.

    4. Play a computer game doesn't matter which one but if you can keep both hands and brain busy you won't focus on the pain so much.

    in the night and for me that's the hardest (it's always 3am) why? I put an audio book in my ears and either a stupid compelling game e.g. Candy crush or coloring.

    All of these things are just distraction to stop you focusing on the pain it's hard work but I promise that with practice you get better at controlling it and not it you.

    i hope this helps if you need any more please ask. Good luck


    ie x


    • Posted

      Thank you that means more to me than you will ever know. I will work on those distractions.
    • Posted

      Hey just checking in to see how you're doing? Hang in there and take 1 day or even 1 hour at a time.

      good luck


    • Posted

      Hi, thanks for checking. Trying to take it one day at a time or in my case one step at a time becuz my other foot is starting to give me issues. It just seems like it never ends.
  • Posted

    Hey, I know it can seem daunting and an hour can feel like forever but you just have to fight you only have two choices really, sit in the corner and cry, letting life pass you by or grab it and say this is what I've been dealt ( I know it's rubbish) but I'm  not going to let it defeat or define me. It won't happen over night but you can do this.

    Have you seen a pain consultant? I know things work differently here in the U.K. Here they're the ones who will help get that pain under som sort of control, we have pain management centers which are often residential not that any of that helps you now, I wish I could wave a magic wand for you, if you'd like to talk more let me know and I'll give you my email, one other thing I know it's really really really hard but try and keep your sense of humor and laugh! I know your thinking is she mad, well perhaps just a little.

    lots of luck and hugs x


    • Posted

      I truly believe my sense of humor is the only that has kept me sane this long. Haven't tried pain management yet they are giving the people with real pain a lot of crap behind pain meds. I know what has worked for me in the past and i am not opposed to new trials but i don't want to be a guiene pig either. Maybe we can email each other i would appreciate it. Thank you

  • Posted

    Here's my email contact me and we can have a chat.

    julie x

    Moderator comment: I have removed the email address as we do not publish these in the forums. If users wish to exchange contact details please use the Private Message service.

  • Posted

    I also have CRPS, since 2007. I had partial kee replacement on left interior knee, that happened July2006. Now I have this along with restless leg syndrome. Does anybody have twisting of extremity affected?
    • Posted


      I have had CRPS Type 2 since June 21, 2015. It is in my right foot and ankle and leg. But mostly in the foot.

      At first I had twisting in the ankle. My foot twisted inward. But with physical therapy and wearing a surgical boot, it straightened out. I think it was caught in time. I was diagnosed a month after the accident that caused the CRPS.

      I too keep as mobile as I can. I was on crutches for a year, then decided that I had to start walking no matter how much it hurt.

      I have been walking without crutches for a year and a half now. The pain is much better, the spasms have stopped, I only limp occasionally, the discoloration is mostly gone, the extreme differences in temperature has moderated.

      I do believe that using the limb and weight bearing upon it is what turned it around for me.

      I am not in total remission but it is so much better than it was. I also know that I MUST be careful. That an another injury can make it flare up again or that I can develop CRPS in another body part.

      God bless you and everyone else dealing with CRPS. I hope and pray that you all find relief soon.


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