1. Community
  2. Bones, joints and muscles
  3. Complex Regional Pain Syndrome

What does CRPS feel like

Posted , 6 users are following.

charlotte1824
charlotte1824

I have been experiencing pain and problems for over 5yrs now. The last Dr I saw told me he thinks it's a nerve pain syndrone and the way he explained it is similar to the way cRPS works but he didn't go into a lot of detail and as far as I understand it cRPS is more like an acid bath on the skin, is this accurate description of pain?

My pain is deep like bone and not skin and a lot of the time it's a heavy, numb burn rather than sharp and stingy.

That doesn't sound like cRPS right?

1 like, 17 replies

17 Replies

Next
  • english_lady_in
    english_lady_in charlotte1824

    Posted

    for me it is a swelling at the injury site ,which feels like it is burning or rather a very very very hot towel wrapped around knee .You could at one time feel the heat coming off my knee .Physio can either make it worse or better ! And sometimes the pain does not manifest itself until the next day .However at the physio hospital I was admitted to straight after my accident they told me it was quite common after the injury I had sustained .My nw physio ,I have been discharged from the physio hospital told me to avoid pain and stop a soon as I felt any as CPS frrds on pain.I use a TENS machine daily which is helping and after 7 months have finally come off strong morphine tablets 
    • charlotte1824
      charlotte1824 english_lady_in

      Posted

      Thanks for your reply, I'm not sure if that what I have, I do have heat at times but no swelling or redness, it's my neck which I don't think is typical of cRPS, did none of the drs try u on amytriptlyn or gabapentin type drugs before morphine? I can't tolerate gab or pregablin and drs as they have no name for my diagnosis they haven't given me more than strong co Cocodimal in terms of actual pa. Physio didn't help and tens makes me worse or no difference, I'm going to look into lidocaine patches to try.

    • charlotte1824
      charlotte1824 english_lady_in

      Posted

      Thanks for the reply, I don't think I have cRPS as I have no swelling or redness, maybe a bit of heat when it's bad. He said my nerves had broken in terms of looping messages through and that's as close to I got as a diagnosis. He gave me gabapentin but I didn't tolerate it at all and after that I'm back on nothing, I have amytriptlyn in the cupboard but not sure if it will help. It would help if they could figure out what I've got so I know how to help it. Tens machine makes me worse or no better and physio didn't help. It's my neck also which I don't think is typical or cRPS. Did they not try you on amy or gab before morphine?
    • english_lady_in
      english_lady_in charlotte1824

      Posted

      Well I fractured my tibia in 2 places and my fibia in one  knocked over by 2 labradors ,not mine .I needed a 2 hour op and several pieces of hardware in my leg ,so yes I needed the morphine big time ! I was diagnosed with CPS at about 11 weeks and it was confirmed by a scinitgram,a bit like a scanner. However CPS ,from what I gather takes many forms mine was a classic case and directly related to the accident .All pf the physio's at the centre where familiar with this form and gentle physio was proscribed .Hope this helps 
    • charlotte1824
      charlotte1824 english_lady_in

      Posted

      Ooohh poor you, Im really pleased the tens is working for you. I hope ur able to recover fully as it sounds like your heading that way. I think the importance of having drs that know what's going on is really important in terms of recovery, I'm pleased you had that x
    • mary82457
      mary82457 charlotte1824

      Posted

      From what I've read, CRPS is usually in a limb, but not always.

      Nerve pain from the cervical nerves is something I'm familiar with.

      Fortunately it's not constant for me, or at least not usually too intense.

      When I turn my head too quickly sometimes there is a "snap", an electrical shock feeling, and my ears ring. That stops after a second like nothing happened.

      Sometimes my neck freezes and the pain is aching and sharp and feels like it's deep in the vertebral joints. That's very bad, and takes weeks to go away, usually wIthout treatment, or PT If I'm lucky.

      Often the nerve impingement causes burning, prickling, and sensitivity on my shoulders and upper back, (from stenosis causing narrowed foramina at C4, C5, or C6, i'm not sure which).

      I can usually keep the burning at bay with good posture, exercise and PT. (My broken shoulder now makes me crooked and throws my spine out of whack, so right now it's hard to avoid "the burn").

      Perhaps that's similar to what you feel, (or not).

      I had one episode a few years back when my left arm was extremely painful, radiating from my neck to my shoulder and down the outside of my arm and my ulna to the pinky side of my hand. i believe that's Ulnar nerve pain, but it came from my neck. The pain was deep and sharp, (like sciatica?), very intense, and my arm was weak and partially paralyzed.

      i took no meds, but extensive PT over a couple of months fixed me and it hasn't returned in that form. That wasn't CRPS, I'm pretty sure.

      The key, I think, is alleviating the pain as soon as possible, before the feedback gets established. Maybe.

      A doctor might be able to explain it.

      With the CRPS symptoms from my newly broken-then-frozen shoulder, I never had the classic CRPS pain, except perhaps burning and sensitivity on the ball of the shoulder. Every other kind of pain was there, and still is, but not as bad as it was. The other CRPS symptoms,(skin, nails, sweating, edema), have almost gone away.I was prescribed Oxy, then cut down to Hydro, and now Tramadol. I'm not that big of a baby, but I needed pain control in order to endure PT. 

      The tens machine only helped while I was actually wearing it, and even then, not after the first couple of months.

      I was never given any neuro-pain drugs, but the pain doctor keeps pushing for a nerve block. I don't want one because I don't think I have nerve pain from the broken bones.

      I don't know if my experience will help you, but maybe there's something in there that you can use. Best of luck to you.

  • kalhoon
    kalhoon charlotte1824

    Posted

    Mine started out with my foot going numb to aching, swollen, color change, from hot to cold. The burn is horrific, at times it feels like my toes are being torn off. Just a touch or even air blowing across the ski intensifies the pain. And add the sharp stabbing electrical charges that shoot up my leg . My entire legs hurts now, the pain is like I'm on fire! Yours could be CRPS or RSD with the burning. Good luck and please see the new dr asap! The sooner you are diagnosed correctly the sooner you can get it under control.
  • english_lady_in
    english_lady_in charlotte1824

    Posted

    Well the C stands for chronic or complex .Chronic is for someone who has pain either for more than 6 months or over and above normal for the type of injury or illness .And complex I presume because there are multiple causes.Mine is a burning sensation both on the skin and deep in the bone ,I now take Lyrica which has pregabaline ,sorry I can't be more helpful as that is the french packaging (it is manufactured by Pfizer).All I can say how sorry for you I feel as it is very debilitating to be pain for so long .I feel my pain is slowly going as I have more good days than bad now as I am avoiding doing exercises I know are bad for me ,well most of the time ,
    • kalhoon
      kalhoon english_lady_in

      Posted

      I am on disability due to this. As much as it hurts to be up for very long my dr says it's helpful t exercise my foot. I take Gabapentin. Amitriptyline and pain meds to helpthe pain. I tried Lyrica but it didn't work for me.
    • heather72469
      heather72469 english_lady_in

      Posted

      I was told I had Crps by rheumatologist as she said it is not arthritis. I fractured my shoulder 11 months ago and have had stiffness in both my hands, it does not sound like typical Crps so naturally I have doubts. She has prescribed me lyrics but I am a bit afraid after having read so many bad reactions to this, I am also diabetic but when. Had an emg it did not show up nerve damage. How did you get on with lyrica is it worth trying?
  • Julie1984
    Julie1984 charlotte1824

    Posted

    I've just been diagnosed with CRPS after suffering for 2 years and being treated wrongly while I was in Dubai. 

    For me it feels like a constant burning pain inside my shoulder (it feels like right inside the bone joint). Most days I have gotten used to the pain with stiffness and muscle spasms around it. I've also got weakness down my right arm and have lost some movement in my hand and fingers. I often get a change in temperature where the area heats up and then later goes cold. 

    I've had a few episodes where the pain has gone off the charts where I have aggrovated it by lifting heavy boxes on sleeping on the wrong shoulder and I have ended up in hospital.

    Over time I'm learning to change my lifestyle and habits not to aggrovate it any more. I've been prescribed Lyrica and Physiotherapy plus these wonderful new anaesthetic big plasters which you can wear for 12 hours and it blocks out the localised pain. I wear them at night and have just enjoyed waking up without pain or stiffness for the first time in over 2 years. It doesn't last long unfortunately and you have to leave a 12 hour gap in between but it felt so good! 

    • Julie1984
      Julie1984 english_lady_in

      Posted

      They're called versatis and yes, are prescription only. The really helped relieve the burning sensation for me and feel quite cool on your skin 
    • Julie1984
      Julie1984

      Posted

      Well the relief didn't last long... The flare up is increasing in intensity daily and there's a 20 day wait for physio. Joy!
  • diane28105
    diane28105 charlotte1824

    Posted

    Hi,

    I have had CRPS in both hands for nearly 4 years,I don't think I have a very bad case though when I hear about the experiences of others.I smashed my wrist but have the condition in both hands.Just lately I am experiencing similar needle like symptoms in my legs!I think the fear of this spreading is the pits.I try to keep positive but on a bad day I feel terrible!

Back to top
Next

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.