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Does anyone know the warning signs of your crps is spreading to another limb?

Posted , 14 users are following.

Pixie76
Pixie76

I have had crps 9 months now after a right wrist and hand injury at work, and it has already spread from my right hand and wrist to my shoulder, chest, back, neck and the side of my head and face. It's scaring the hell out of me. No one really knows a dam thing, they are just fumbling about trying to find the fastest way to get you off their insurance books, I think it's disgusting! They have no idea what they are doing to us with all the stressing and pushing. I'm sure we have all discovered stress just amplifies the hell we are physially and mentally in. They have pushed me into severe depression and anxiety according to my psych... which is just making things worse as you can imagine. I have for some time been getting an intermittent mirroring pain in my left arm, but it's getting stronger and more often and a clumsy weakness to my left hand. A "doctor" supposedly familiar with crps assessed my left arm and said it hasn't spread there....well I could have told him the clinically "excepted" symptoms for diagnosis are not present. But they said the same thing about my right hand and wrist 2 weeks before all hell broke loose!...does anyone have any adviI have had crps 9 months now and it has already spread from my right hand and wrist to my shoulder, chest, back, neck and the side of my head and face. It's scaring the hell out of me and I completely agree with RogerB, no one knows a dam thing, they are just fumbling about trying to find the fastest way to get you off their insurance books if you are injured at work and I think it's disgusting! They have no idea what they are doing to us with all the worrying and pushing. I'm sure we have all discovered stress just amplifies hell. They have pushed me into major depression and anxiety disorder according to my psych... which is just making things worse as you can imagine. I have for some time been getting an intermittent mirroring pain in my left arm, but it's getting stronger and more often and a clumsy weakness to my left hand. A "doctor" supposedly familiar with crps assessed my left arm and said it hasn't spread there....well I could have told him the clinically physical excepted symptoms for diagnosis are not present. But they said the same thing about my right hand and wrist 2 weeks before all hell broke loose! ...Does anyone know if it sounds like it is spreading to my left arm? As I have only experienced it spread along the same limb and side. I'm trying very hard to dismiss it, but I have also noticed my right leg get a tingling feeling from toes to calf quite a bit lately, surely that is in my head? I honestly don't trust them here. Thank you for taking time to read this. I pray you are all well and finding peace.

1 like, 20 replies

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  • emilyvictoriaosaurus
    emilyvictoriaosaurus Pixie76

    Posted

    Hi There! 

    First of all i am really sorry you are going though all this, it is such an awful thing to happen - i have had CRPS for 4/5 years now and it was in my right leg and since then has spread to my other leg, back and left arm. I totally understand and can relate to how you feel, i also attended councilling etc to help me because of this and anxiety/stress. My experience of the condition spreading is i get this cramp type of feeling and it feels like it squeezes? it hurts so bad i can't move the limb that it is in and then it goes cold, then after that and physio and various medication it goes back to normal, but saying this because i have had it so long i have learn't how to control it to the conditon does not control my life so much, although i still am in pain even if it is not as bad as it was. I hope my experience helps you to be able to understand yours, once again i am sorry that you have this too but remember you are not alone.

    • Pixie76
      Pixie76 emilyvictoriaosaurus

      Posted

      Thank you so much for responding to me so quickly. I too am very sorry that you have had to live with this condition for so long. The pain in my left wrist and forearm comes and goes. It is triggered but overwhelming pain and stress from the right side and excess use of my left hand.I have also noticed it also goes cold, but because the other physical manifestations are not present the dr has ruled there is no crps there at this time and is going to inform the insurance company of this. Regardless of their opinion I am worried that is is spreading and the will only aknowledge it if all criteria are meet...which by then as we know would be too late. Thank you, I'm not feeling so alone and misunderstood.
  • alsion
    alsion Pixie76

    Edited

    I have the condition in my right heel following a routine Achilles heel operation. I have had it now for over three years and have to walk with sticks. It seems as if it's spreading to the toes on my other foot as I keep getting sever shooting pains in them and them continue to turn a pleasant blue! Since last year I have now got hypersensitivity of the mouth and I have Botox injections to loosen my jaw. Dental work has to be done at maxillo facial at hospital as it's too painful for my dentist to do work. My pain consultant is amazing, however after the first year of diagnosis the appointments drop. He believes adamantly that the pain can spread randomly anywhere in the body. The key to stopping its spread is to keep active, no matter how much it hurts, and to try not to become depressed. I am well aware that is almost impossible and I am on a variety of tablets for pain and mood to enable me to work full time. I expect you know by now that a low mood makes the pain so much worse. I find any heightened emotion, including laughing, makes the pain increase. I have been lucky as I have had weeks of mindfulness sessions which help so much, guanethidine blocks, hydro pool, pain management courses ....but I couldn't work and run a house without the bundle of tablets I take every four hours. My specialist has told me the best way of stopping is spreading is to trick the mind into thinking that all your limbs are just fine. It sounds odd but you have to learn to love your limb that it is in. The more hatred you feel to it the worse it will get. It is such a ridiculous condition as technically there is nothing wrong but the brain is wanting ut removed, hence the desperate want of amputation. A local man near where I live actually cut his hand off with a home made guillotine. I have asked but have been told the condition could spread to my stump, other leg of arms . Read about Rachel Morris - Paralympic where this happened. Every day I go to work I feel I have achieved something good and this is the key to the condition. I loathe my crutches and would give anything to be able to walk as I used to but focusing on the bad will make the pain worse. You have to try to think of the good things in your life, no matter how small and it helps. 
  • nadua007
    nadua007 Pixie76

    Edited

    Sorry you have to go through this. I have had CRPS for a year and a half now. First it was my left ankle only. With the start of this cold season 4 months ago, I felt cold at my left foot and all of a sudden felt a squeeze and voilent contracts at my left leg and thight only on the side where the injured nerve was. After that basically whenever I felt a little cold it going further and further specially at nights. I have it all over my body now. My body cannot regulate its temperatures and all my blood vessels are affected as I sweat like I am in a shower and food absorption is decreased, etc.. Last year, I had a few sympathetic nerve blocks in time. Have I had them this year, they might have prevented spread.

    You basically need to prevent spread. Sympathetic nerve blocks are good for prevention. I hope yours doesn't get where mine got.

    • allaroundanne
      allaroundanne brenda_savvy

      Posted

      What kind of nerve blocks?  I am being offered lumbar sympathetic nerve blocks.....
    • brenda_savvy
      brenda_savvy allaroundanne

      Posted

      I had those.   Really was so much worse. I think it’s the needles.  But a lot have success 
    • allaroundanne
      allaroundanne brenda_savvy

      Posted

      Sorry to keep bugging you, but you were just having local anesthetic and maybe some steroid injected, no burning the nerve type of block, right?  It does kind of make sense that if you are misfiring from that ganglion, needling it could make it worse and not better.  I've done a ton of stellate myself and a few lumbar and never had anyone get markedly worse thank goodness.  But, I see how that could happen and I surely don't want to be one of those. Ugh, I hate making these decisions.

  • Wanda1968
    Wanda1968 Pixie76

    Edited

    Hey just wanted to let you all know that I've rsd for 13 years now and the Dr's here where I live don't know crap either. But just don't give up although I know how easy it is to do . Just take one day at a time. My heart goes out to every person who has this. May God richly bless you all.

    • carice02571
      carice02571 Wanda1968

      Posted

      I want to let you know that I too have Co.plex Regional pain syndrome also known as RSD I have it in my upper and lower extremities on the left side it started in 1993 with a work related injury I since have a good pain management team and a wonderful neurosurgeon that put my Neurostimulator in it is a wonderful tool to have to control pain without the side effects of medications the only draw back to that you do get break through pain that's where some medication is ok .

    • nickname234
      nickname234 Wanda1968

      Posted

      Does the pain ever get better? I was recently diagnosed with CRPS and its been hell. I'm only 13 years old so you've had this as long as I have been alive. Doctors don't know anything at the children's hospital i'm going to, but there is no other options. Does it ever get better?

  • patty1021
    patty1021 Pixie76

    Edited

    I can relate I have had it for about 20 years seemed to disappear for a while now it's back with a vengence my doctors say it's not both legs stay swollen and sweat bad at night pain has spread my entire body, skin burns a lot can't stand clothes to touch me, praying for us all, if they had to suffer like we do they would understand, good luck to all

    • brenda_savvy
      brenda_savvy patty1021

      Edited

      Hi patty. Few threads going at thr moment in which we speak about the correct diet to follow which can help lower pain etc. 
  • carice02571
    carice02571 Pixie76

    Posted

    Usually it depends on which type of crps you have for it to spread if it's type one it will spread to other parts of the body if it type 2 crps the it will just stay put. I have had crps since 1993, due to a work related injury is true they jus want to get you off the books as fast as they can but you have to fight it! That said . Find a pain specialist that is qualified in symthetic nerve blocks they due work and help also if you can tolerate suggest trying a Neurostimulator I have one for my upper and lower extremities for crps. And I feel the difference in my pain levels most of the time. I am going to tell you to try to avoid surgery on your extremities if at all possible it will no doubt increase the symptoms of crps which I am currently experiencing. I hope this helps you to understand.

    • patty1021
      patty1021 carice02571

      Posted

      yep I also started with a job injury, mine has spread and my doctors say there is nothing else they can do i also have permanent damage to the spinal cord because they let these disc in my neck pinch on the spinal cord when they fixed them the pain is worse and am really miserable, doctor ordered a pain mixture at the compound store and it works great, diflonec, gabapentin,lidocaine,and baclofen
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