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Living with Neuropathy - Welcome to the group
Neuropathy | Last Active: 5 hours ago | Replies (5964)Comment receiving replies
I think I'm in here somewhere but my diagnosis has changed and I don't know if I'm in the right group. I finally received a second opinion and unfortunately it's worse. I have Complex Regional Pain Syndrome CRPS. Nicknamed the suicide disease as the on the long scale it's 42 out of 50. I have read reports that attempts and success range at almost 70%. So far no favorable prognosis. Same deal Gabapentin and pain killers. I've been promised I would be kept comfortable but no one knows how to do that. I live 24 7 in my dark room because the light affects my head. Is there anyone in this group that has had this disease for over 2 years as I believe we would have more in common. After 2 years your not eligible for testing anymore because after 2 years there is no chance of a cure. You are too alive to be helped by dying with Dignity because I suffer with my hands 24 7 it feels like they are in boiling oil. Because I'm not eligible I have to suffer forever. When your reading and they say rarely children get this but they do and it's vicious on our little warriors. HELP
Replies to "I think I'm in here somewhere but my diagnosis has changed and I don't know if..."
@confused1955, I have a severe case of sfn and Erythromelagia in my feet. I understand your pain all too well. If I take a shower I am in agony all day from the warm water. The meds I take don’t work well, Gabapentin and Amitriptyline. There are many days I wish that I could be on a morphine drip because of the agony. I have not been given any kind of narcotics for pain management. The doctors want me to wean off the amitriptyline and try Cymbalta. I don’t think I could stand the weaning off period because the pain is at a 10 now for a good part of the day. I feel so awful for my husband and family because it’s not fair to them. I’m not functional any longer and I live in fear. Do you have CRPS in both hands? My feet get cold and hot and red, and when they are hanging down they turn purple. I have to keep them elevated most of the day. Do you have twitching in your hands? My left foot twitches all the time. I’m so sorry and I know how difficult it is to endure.
I am a 43 yrs old female. Diagnosed 9 years ago when they called it Reflex Sympathetic Dystrophy Syndrome. They new VERY little about it. So I put it by the way side. Suddenly 2 yrs ago it hit me like a freight train. This pic is what my hands do during just a typical flare up. You are not alone. Feel free to talk to me anytime!!! I need support as well. Mayo clinic in Jacksonville, FL has a CRPS specialist on staff. They can do all the diagnostic testing and any treatment there. But they require a $5000.00 retainer, not including lodging. I live in Atlanta, GA and I'm gonna go out on a limb here and say....my name is Dana. Feel free to private message me. I am truly just trying to figure out where to even start with all this. And I have a 6 yr old son and 12 yr old daughter. But Im someone who understands what you are going through. Day or night. God bless!! Dana
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Hello @confused1955, I'm also sorry to hear you are suffering so much. I agree with @qball2019 about looking around for an integrative pain specialist. You might consider joining the following discussion where other members are talking about Complex Regional Pain Syndrome (CRPS).
> Groups > Brain & Nervous System > RSD/CRPS
-- https://connect.mayoclinic.org/discussion/rsdcrps/
Also, there is more information on CRPS on the Mayo Clinic website here:
-- https://www.mayoclinic.org/diseases-conditions/complex-regional-pain-syndrome/symptoms-causes/syc-20371151
Did your doctor suggest any treatments or therapy after your diagnosis of CRPS?