Starsister
Senior Member
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I'm confused what kind of specialist I should see for my skin and nerve pain that is all over my body. I have seen a neurologist twice now and every time I try to explain even just a few of my symptoms, he tells me that it his not his area. Even though I can't stand without getting dizzy and have extreme back pain, my most miserable symptom is the constant skin pain all over my body.
In the 80s I began having pain in my feet, and my feet would burn if I put them in mild temp bath water so learned to prop them up out of water so I could soak my aching body in nice hot water, about 2000 I realized the water didn't hurt my feet any more than realized it was because my feet had become somewhat numb.
As years have gone by, my fingers and hands now have the needle like pain, and all limbs the pain and numbness has do read to arms and legs. I have had confirmed by a number of GPs that if is neuropathy. But they look at me blank when I tell them I have had the same condition throughout my whole body girl years...the burning, needle like pains covering every millimeter of my body. The worst is my hips, torso, rear, and hamstrings because if is literally impossible to not have that part touching anything and making the pain worse.
I have been in tears from this kind of pain more than anything else because there is literally no break from it. The most relief is laying on my left side in bed with no clothes or sheets touching my skin (I've been limited fir years from laying on right side or putting pressure on right buttocks due to sciatic nerve).
I've tried lidocaine cremes, with no effect, temporary help with BioFreeze as long as I can fall asleep before it wears off. I'm used to feeling that my entire body from head to toe is on fire constantly, but the needles where I can't keep pressure off my body is the worst. Twice I've tried explaining this to the neurologist and he just interrupts me and says if it not related to my hands and my feet, it can't be a neurological issue.
Can someone explain to me why it could not be? He sent me to the spine doc who ex rayed and said nothing showed a reason for it, although I have two MRI reports giving details of bulging and compressed discs throughout my spine, osteoarthritis, stenosis everywhere, and lots of other terms. Spine dr just sent me to pain clinic and all they offered were different kinds of shots in my back but when I tried to tell them my symptoms, hoping someone would help me connect the dots, they cur me off and said their job was not about figuring cause of the pain, just getting rid of it.
This did not instill much confidence as I'd like to hear some rational as to why someone is going to stick a big needle in me and pump me full of steroids BEFORE I let them fo it. I have weird allergic reactions to steroids in the part, and other meds, so that makes me nervous, plus I can tell by the look on their faces and questions they ask that they have no clue that I am actually talking about pain actually on my skin. Yes, I have the usual cervical and lumbar back pain like many folks, but I could manage that as long as I can get off my back by laying down or sitting!
My neurologist is in his 60s...I do t know whether he is just old school and I should try a different neurologist (although here the doctors are all owned by the hospitals and even though there may be many neurologists in each practice, they won't allow you to change docs within the practice so you have to go to a completely different hospital owned group, and there is only one other hospital area that I am able to drive to).
Can anyone tell me if I am even going to the right kind of specialist? He sent me to a rheumatologist but the Rheumy just bent my feet and toes a bit and actually told me I didn't have neuropathy anywhere, going against 5 other docs. Now I don't know what to think, most of this is at my own expense as I have a super high deductible, and I'm not getting any answers, only referrals and they will be running out of places to pass the buck pretty soon.
Ido have lab orders to do some testing tomorrow to rule out or ID lupus or autoimmune disorders. I'm not even sure if I should be posting this question here, or on the forum that includes "skin" issues. All I know is the feeling everywhere feels like the same pain that started out in feet ad Pandora kegs that they now say is peripheral neuropathy. I discovered the term "small fiber neuropathy" recently on the internet but can't tell if this is if it not..and if it is, why can't the neurologist deal with it? I'm scheduled for an upper and lower EMG, but I doubt he's going to test the middle of my body since "that's not his area". Any thoughts would be much appreciated. I'm running out of specialists to try. Thanks.
In the 80s I began having pain in my feet, and my feet would burn if I put them in mild temp bath water so learned to prop them up out of water so I could soak my aching body in nice hot water, about 2000 I realized the water didn't hurt my feet any more than realized it was because my feet had become somewhat numb.
As years have gone by, my fingers and hands now have the needle like pain, and all limbs the pain and numbness has do read to arms and legs. I have had confirmed by a number of GPs that if is neuropathy. But they look at me blank when I tell them I have had the same condition throughout my whole body girl years...the burning, needle like pains covering every millimeter of my body. The worst is my hips, torso, rear, and hamstrings because if is literally impossible to not have that part touching anything and making the pain worse.
I have been in tears from this kind of pain more than anything else because there is literally no break from it. The most relief is laying on my left side in bed with no clothes or sheets touching my skin (I've been limited fir years from laying on right side or putting pressure on right buttocks due to sciatic nerve).
I've tried lidocaine cremes, with no effect, temporary help with BioFreeze as long as I can fall asleep before it wears off. I'm used to feeling that my entire body from head to toe is on fire constantly, but the needles where I can't keep pressure off my body is the worst. Twice I've tried explaining this to the neurologist and he just interrupts me and says if it not related to my hands and my feet, it can't be a neurological issue.
Can someone explain to me why it could not be? He sent me to the spine doc who ex rayed and said nothing showed a reason for it, although I have two MRI reports giving details of bulging and compressed discs throughout my spine, osteoarthritis, stenosis everywhere, and lots of other terms. Spine dr just sent me to pain clinic and all they offered were different kinds of shots in my back but when I tried to tell them my symptoms, hoping someone would help me connect the dots, they cur me off and said their job was not about figuring cause of the pain, just getting rid of it.
This did not instill much confidence as I'd like to hear some rational as to why someone is going to stick a big needle in me and pump me full of steroids BEFORE I let them fo it. I have weird allergic reactions to steroids in the part, and other meds, so that makes me nervous, plus I can tell by the look on their faces and questions they ask that they have no clue that I am actually talking about pain actually on my skin. Yes, I have the usual cervical and lumbar back pain like many folks, but I could manage that as long as I can get off my back by laying down or sitting!
My neurologist is in his 60s...I do t know whether he is just old school and I should try a different neurologist (although here the doctors are all owned by the hospitals and even though there may be many neurologists in each practice, they won't allow you to change docs within the practice so you have to go to a completely different hospital owned group, and there is only one other hospital area that I am able to drive to).
Can anyone tell me if I am even going to the right kind of specialist? He sent me to a rheumatologist but the Rheumy just bent my feet and toes a bit and actually told me I didn't have neuropathy anywhere, going against 5 other docs. Now I don't know what to think, most of this is at my own expense as I have a super high deductible, and I'm not getting any answers, only referrals and they will be running out of places to pass the buck pretty soon.
Ido have lab orders to do some testing tomorrow to rule out or ID lupus or autoimmune disorders. I'm not even sure if I should be posting this question here, or on the forum that includes "skin" issues. All I know is the feeling everywhere feels like the same pain that started out in feet ad Pandora kegs that they now say is peripheral neuropathy. I discovered the term "small fiber neuropathy" recently on the internet but can't tell if this is if it not..and if it is, why can't the neurologist deal with it? I'm scheduled for an upper and lower EMG, but I doubt he's going to test the middle of my body since "that's not his area". Any thoughts would be much appreciated. I'm running out of specialists to try. Thanks.
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