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
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!
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
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 .
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 .
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
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!!
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 💜
This sounds very similar to what there telling me .
not sure if the epidural block wil help
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..
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?
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.
Yes did you do anything to your hand? Are you going to a pain clinic. I have had 10 sympathetic nerve blocks in my spine for my knee. The specialist explained it that the nerve blocks are not really for pain. They trick the body so everytime you have one your pain and mobility get a little better. Some make more of a change than others but that is why I have had so many. I have also had trigger point injections that are like having MMS and an injection at the same time, very painful but they do help as my CRSP had spread to my little toe(opposite leg) when I dropped the vacuum on it. I have also done physio- I went from being on crutches to walking now without a cane. I still have pain of course and it can be inconsistent but I have a much more normal life now. I am not sure where you are located but I paid for a consult with a orthapedic surgeon that got me into the pain clinic in two weeks and then they referred me again . Definitely worth it to not take forever in the system. However I am in Canada so my treatments are free.
Thanks I wins I had people around me that got it as well
but thanks . Wha sort of other therapies do you do ?
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.
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.
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 .
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.
Mine spread. I don't get the sweating. Have you tried buffeted vitamin c. Supposivly c is supposed to help stop the spread of it at least in a trial it seemed too. I'm all in. Got nothing to lose you could try that.
Honey, don't feel hopeless, my son's started in his right arm/hand and that was caused from him getting tackles and fell wrong in football but found out he had extra rib in behind his collarbone and all the nerves were compressed. to make a long story short my husband took him to a physicians care doctor and they said it was cartileage and he would grow outta it but come to find out months later when he started having all the swelling, discoloration, numbness, and ice cold to the touch hand turning blue, his collarbone was dislocated at the sternum after he kept complaining with it I took him through ER and they referred to Orthopedic Doctor, he said he would grow outta it. Finally my son was seeing my Chiropractor and started having pain in his left leg one day just thought maybe he pulled a muscle and next day went to school and called me as soon as I got to work said he could barely walk on it and I took him to the Chiropractor since he had helped alleviate the compression on the nerves between collarbone and extra rib when he saw my sons leg he knew exactly what it was because his daughter had the same thing so we got lucky early. Anyways I said short, sorry. He got to the point he couldn't walk without crutches and was like that for several months finally walking now. My point is if you were diagnosed with RSD / CRPS this disease can pop up anywhere on your body. Not to dispute your doctor but I will tell you a few things that should help you since your newly diagnosed . Take a Ibuprophen & a Benadryl as that will help with the swelling around your nerves I know that sounds simple but it will help. My son woke up to go to the bahroom one night he said it was like everything stopped working and he fell face first crutches still under his arms we immediately gave him Ibuprophen and Benadryl as they both together work wonders also B12 helps with helping the nerves to heal take each of these 3-4 times a day. You need to find a doctor who actually knows about RSD / CRPS because alot of them will say they know about this disease but they really don't. I hope this helps you because I feel for anyone who has this horrible disease as I know what my son has been going through.