Has my crps spread

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I have crps in my right hand and up my right arm .

after having severe pain , burning , stabbing in my feet and ankles . I thought the condition had spread , after having this for 6 months , I  saw the pain doctor who , told me that he doesn't think it's crps. He thinks it's to do with disk degeneration ???, as he knows that I worked as a hairdresser for 20 yrs. I have Never had any problems with my feet at all until six months ago . The pain feels the same as my hand and it feels like a slap in the face like, I don't know what I'm talking about . It feels like to much of a coincedence that this has happened . I feel hopeless 

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  • Posted

    Hello, is this pain dr the same one that diagnosed your crps in your hand and arm? If he is not then you need to see someone else. From my experience alot of pain drs are only interested in making money, not in patients problems. Crps can spread, mine started in my right leg and is now in both legs. Good Luck!
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    • Posted

      Hi Walter 59 , thanks for responding . This is not the same dr that diagnosed me,she was amazing she retired and this guy took over. I am attending a public Hospital so I pretty much have to take who I Get. The pain dr wants to do a Caudal Epidural Block , to try and stop the pain in my feet an Legs. This will happen in a few weeks . I don't know , no one gets it , how helpless you feel, I just want someone to take control , and know what their doing .

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  • Posted

    Hi michelle

    it can definitely spread to other limbs, I was told this by the National Hospital for Neurology and Neurosurgery in London, they were the ones who confirmed my diagnosis in2010. There is only a short window of about six months to reverse any symptoms. There is not very much general information out there as general doctors/gp's do not know much about it if anything. Each time I go to the Drs I have to tell them what it is and how it effects my every day. You are not going mad but one thing I was taught at pain management is that you cannot tell someone else how much pain you are in and expect them to understand it. Your pain is unique to you, I felt like you for a long time, but the problem is is that unless your limb is hanging off people will not understand how severe the pain can be. My doctors said my pain could go into remission but it hasn't and I have learnt to deal with it as best as I can. The hospital discharged me telling me there was nothing more they could offer me other than pain relief medication so I take everyday as a new day, and pace myself so that I don't push it too far when the pain becomes excruciating and cannot move at all. I wish you my best wishes and hope you manage to speak to your doctor that you saw for your diagnosis. Wendy12365

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    • Posted

      Hi Wendy , I need to talk to someone who understands, no one gets it. 

      The pain dr said it's very very rare that CRPS spreads to other limbs, and it never spreads to two limbs. Every dr tells you something different . I just need someone to be confident and take control .

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    • Posted

      It does spread! This is proven and true.. It's unfortunate and maybe they don't want to see but it does spread AND you will find someone who gets it. Although it feels. Like they are few and far between but they are out there. Hang in there!!

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    • Posted

      I feel like I have seen so many doctors who don't know much about this . I wasn't diagnosed for nearly 2yrs. It's just nice to talk to someone who gets it 

      Thankyou ??

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    • Posted

      You are more than welcome.. I have a fairly new diagnosis and was lucky to get a pain specialist right off the bat who believed in me and with me, but since then, with flare ups and ER visits I have run across so many who don't and despite being an RN for over 20yrs (in that hospital!) I have been mistreated and prejudiced against with respect to my pain.. But I get it, if you need some one too, believe me I get it..

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    • Posted

      Hi michelle79685, I will tell you my story. My right leg began hurting really bad about 20 yrs ago, yes 20. I suffered for years going to clinics and drs only to be told they didn't see anything wrong and some calling me a drug seeker. I was even banned from one hospital. About 2 years ago my right leg began to atrophy. I was diagnosed with crps about 3 months ago. I have been unable to do anything for 6 months now. I was  diagnosed by a neurosurgeon. It is good that you were diagnosed in 2 years.

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    • Posted

      Hi Michelle, you are right nobody gets it, but the therapists urged me not to over think it as it makes your pain worse. You need to identify your triggers, what's makes the pain worse, but most importantly you have got to pace yourself, and understand you cannot do the same things as before. Keeping calm actually calms your pain not much but enough to process the pain. Don't feel bad which is easier said than done I know, I struggled and fought it all the way but it doesn't help in the long run. I manage my pain by resting so that they don't flare as then the pain is through the roof and I'm out for days and I don't cope well when like that. But you are definately not on your own we are all in this together CRPS is CRPS no matter where you have it.

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    • Posted

      I did lots of physio, including tried desensitization, which was horrible. My daughter is a kinesiologist so she has shown me a lot of how to do activities at home that work as exercises too. As well, I've done mindfulness meditation, but mostly I'm just learning to be a different person, as we all know we are forced to do after this diagnosis whether you want to or not, but learning how to pace myself, learning sometimes I have to say I can't do something, or no thank you I can't make it to something without feeling guilty all the time. Unfortunately we have to learn to listen to our bodies, and put it first, which for most of us is a complete new way of thinking.. I think that's the hardest part.. For me anyways.

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    • Posted

      Thanks Wendy , I have anxiety as well which I've had all my life , so relaxing and calming does not come easily to me . I had a very full on busy job and lifestyle which is how I liked it . They tell me I have an adjustment disorder, which makes sense cos I constantly fight between busy and wiped out .

      im trying to find a support group that I can attend , cos I need people that get it . 

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    • Posted

      Yes I agree its difficult. I do meditation as well. Try the nerve blocks if you can . It takesca long while but helps. I try to take as little pain meds as I can as I have to work. Its funny I have had driving anxiety since getting the CRPS too.
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  • Posted

    Had similar issue when developed symptoms in my left leg. (Had originally had symptoms in my left arm and hand following a neck injury, that was my initial diagnosis area) at first they we're a bit ambiguous but then developed allodynia in left leg which I immediately recognized, but because of my 20year nursing history they assumed was Lower spine disc hernaition. Follow MRI did not support disc issue and soon became evident with swelling and colour/temp change hst it was CRPS spread, which has now been confirmed by several docs.. I believe listen to your body. You know best

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    • Posted

      They want to do a block for the leg? I've had several that worked but didn't last long enough.. I'm waiting on a spinal cord stimulator now. Is that the only option they are giving you right noe?

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