Cold burning skin, dizziness.

[Armistead1424]

Course I'm one of those long crazy stories. I was in perfect health when in late 30's fell and crushed elbow, surgery, ect. Weeks after surgery my elbow hurt unlike I can explain. They said it was infected, but it lasted for weeks, red and burned so bad. It finally cleared up leaving minor burning paing, but then my body got wierd. It was like I would get severe chills that give you goosebumps all the time, ears ringing, ect.

Later I started having pain in my feet and groin to my privates. Saw many Doctors, many test, just told I was stressed, but pain was spreading and getting worse. Finally a neuro did nerve test and was told I had neuropathy, did all the test to figure it all, nothing.

Still, many other symptoms popped up and she no longer seemed to care, just told me not to stress. If I exerted much my skin would get cold and feel sunburn. I started having muscle twitches throughout my body. I really tried other neuro's at med schools. Two said I didn't have neuropathy, but couldn't tell me why i bad abnormal nerve studies...my neuro said I did have it and test proved it.

As years pass the pain has spread...really two kinds..always have severe pain in my feet, legs and now hands. The other is mainly my upper torso and arms will get ice cold to the touch...that's what people say, but I feel so sunburned I can't even shower..I also get so dizzy I can't walk. Have been on painkillers for years. Still, I can't get a Doctor that will even let me exert enough to show them what happens to my skin. My neuro doesn't seem to know who I am from visit to vist. Seems my body has turned into a dysfunction. I lost my job, then a business. This year it's got so bad I basically don't want to move. So dizzy I can't drive, but only when my skin goes cold.

For years Doctor's just told me stress, in my head, ect....I understand why, but I know this is not stress. Certainly it has a stress componant. I quit looking for answers and just see my neuro 3 times a year and she writes meds.
She honesly doesn't know who I am when I visit. I don't want to die, but now it's all I think about, like I have no other choice. Have a great wife and son, but this has destroyed our life. I once made 200K a year and now we are facing losing everything. I know people want me to get up and go and my body refuses. I can get through the nerve pain she says is neuropathy in my feet, legs, groin, ect...feels everywhere, but if I exert the only way I can explain it is get naked and sit outside in 20 degree temp until you feel on fire, then dizziness on top of that.

I'm at the end of my rope. I want to die, but can't do it to my family. I just worry there may be a moment that that won't be enough to stop me.

Something has to cause your skin to get very cold. Also, I can't control whatever causes chills, like the kind you get when someone scratches a blackboard..They happen all the time, but mainly minor exertion pushing, not really pulling..hard to explain, but like starting to pee, I get chills so bad, but lifting something doesn't do it. Then they can just hit anytime doing nothing.

[Armistead1424]

I wish I knew how to find the right Doctor. My GP just doesn't know where to send me now. I guess I got tired of trying to explain myself to different Neuro's. If I complained too much, was told stress, if I didn't complain enough...then they thought nothing was wrong. The thing that is confusing, why they admit something is wrong, they all don't agree on a dx.

My GP said he is sorry I got stuck with her. I'm scared to lose her because she prescribes my meds. Another Neuro that I liked said he wouldn't until I went through 3 months of physical therapy..course they own the clince. I went for 3 weeks..3 times a week. It was a joke. Basically young kids that make you ride a bike for a few minutes, give you crappy massages and I would refuse because they hurt my skin. All these little things do nothing for chronic pain and I could no longer afford to go.

Over the last two years I just said little to my current Neuro, just get my meds and leave, but it's got so bad I started really complaining. I told her if this is neuropathy, it's really getting bad...she said "you don't have neuropathy." I asked her what she was prescribing all the pills for...she looked through her notes and said..."yes, we did dx you with it when you first came and said it was time to do more nerve studies" Only been 7 years since and I had minor pain then. If I say anything about freezing sking, dizziness, she just says I may have a tough of autonomic neuropathy.

But the three other Neuro's that looked at my test said it wasn't neuropathy. I'm not sure what they saw to say that. Why they say I have obvious nerve damage, just that it doesn't show a typical PN. Course these were other Neuro's at med schools and none seemed to take the time, just said they would send their second opinions to my Neuro...and I was like I didn't come here because of her..I came on my own for help.

I'm just not going through this...you're stressed when I have so many obvious symptoms. My toenails are now all cracking. I can't even cut them because they just shatter. I asked her if that could be from nerve death...she wouldn't even look at my feet. Just said more Nerve Studies...problem is I've since lost my medical insurance so I'm basically screwed.

[Tuckamore]

Welcome to the Pain Mangement Forum. I am glad that you found us and posted.

I apologize for my tardy response. I am so sorry to hear about your strange and painful symptoms. My heart goes out to you. It is sad what chronic pain does to our lives. We do understand and can empathize with you.

Nerve destruction, irritation, inflammation what ever you want to term it does produce many of not all of the symptoms you are experiencing. But it seems to me that there should be a name for what you have, a reason that you have all this nerve pain and symptoms.  

I would not continue to see a physician that does not even remember me. Please find another neurologist. You deserve better, much better. Don't give up. Be assertive and seek answers. A new set of trained and educated eyes may have some better answers for you. It's certainly worth a try.

I too was once a productive corporate professional, earning a high wage. I have been where you are, wondering if death wasn't better than the life I was attempting to drag myself through. I even had a plan. But your post says it well, it never an option. With life there is hope. I beleive there is always hope. I found (quite by accident) a physician that was able to diagnosis my condition and treat me. My outlook changed and so will yours with proper care.

Additionally this site and the friends I have made her have been wonderfully supportive. It too has made a difference and hopefully it will for you also.

I have some commitments I have to tend to now but I will do some research on your symptoms and get back to you. Again they do sound like they are related to a nerve disease.

Hang in there. Our members may have other suggestions for you. Please keep in touch and let us know how you are doing. I'll look forward to your posts and updates.

Take Care,
Tuck