Peripheral Nerve Hyperexcitability (PNH) Community
fed up with the pain of neuropathy
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This patient support community is for discussions relating to Peripheral Nerve Hyperexcitability (PNH) and the various conditions related to it such as neuromyotonia (NMT), cramp fasciculation syndrome (CFS), benign fasciculation syndrome (BFS), Isaacs syndrome and others.

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fed up with the pain of neuropathy

I'm not diabetic but I have severe Neuropathy. I am 43. In 02 had hyst .. In 06 I had 2 strokes.. I have severe numbness and pain in my feet and my calves feel like they are always swollen and hard. But to touch they are not.. Just feels that way.. My hands and fingers feel burnt and to touch they feel numb in my fingertips. My fingers also are swollen ... I have been to the specialists who just say nothing and send me to someone else. No one canjust tell me who can honestly fix this. I know this can't be how I have to live. The pain meds just make me sleep. Because of everything else Im on.When I wake up I feel worse.. When it rains I feel even worse... I have no balance . Can't be on my feet for more then 10 -15 min. I have degenerative discs. Low potassium. High blood pressure and I've been in a wheelchair for three or four years.. I have no life. I never leave the house. I just want a plan to fix me. Where do I go  & what do I do. Please someone help me... I have a great family Dr. But we have tried and tested everything. I just need some ideas. Thank you for letting me vent. .. Sorry for the spelling.. Thanks.. Gstrukel
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871639_tn?1360287513
You say you have a great family Dr., but it sounds like you should be seeing a neurologist on a regular basis (you may already be doing that). In addition, you should be in physical therapy probably to maintain functional movements. Lastly, I would recommend seeing a therapist who specializes in managing pain. I thought it would be crazy to do that, but I gave it a try and its really helping me.

I have severe fibromyalgia and something called POTS, and I've experienced ALOT of numbness and significantly disabling pain. I take Gabapentin, tramadol, Tylenol, and Effexor to manage the numbness and pain. I see a physical therapist, a neurologist, a family Dr., and a pain therapist.

Don't give up hope. Make small goals and keep moving forward. Try not to be too hard on yourself.
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Hi there. Thanks for the reply.. I had a neuro guy but he moved.. I'm looking for a new one but he exhausted all he could do other then surgery to fuse the five discs  in my lower back but Im not ready for that major surgery yet.. And now I gotta find someone Im comfy with again. I don't have a physical therapist  I'll talk to my Dr. About that. I had a girl that came to my home two years ago but she just showed me minor things I could do on my own.... What is POTS? Is that what gives you the numbness? I have the numbness and the electric shocks in my feet.. The pain is excruciating at times with no relief. Ive had the tens unit... Didn't work.. The pain pump... Didn't work.. Now just trying to manage.. I tried a pain doctor.. All he did was give meds that made me sleep. Didn't really work out so my Dr is managing and we try different specialist till someone knows exactly that's wrong with me.. My next goal is to get set up to go to MAYO  clinic. So we shall see... Again thank you for the help and kind words..
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871639_tn?1360287513
Excellent idea to go to the Mayo Clinic. My Aunt has had enormous success there. POTS is Postural Orthostatic Tachycardia Syndrome. I have the hyperadrenic adult kind, which is the probably permanent  harder to treat version. If I did not have such a good Neurologist right now, I'd be going to the Mayo Clinic myself because they have amazing resources. POTS makes my heart race up to the 180s just standing but will return to resting position on laying down. It is not a heart problem, but its autonomic dysfunction and a nerve issue. All of my issues are really nerve dysfunction problems.

Have you been referred to your local university for specialized testing? I did that during the year I was trying to figure out what the hell was wrong with me. I had to go through to a second neurologist before that happened, however. Sometimes a second opinion is really refreshing. My first neurologist ordered all the right tests, but he missed a lot of other options that my new one found and consequently helped me to find a diagnosis.

My numbness is still a bit of a mystery as to whether it was the POTS or the Fibromyalgia or something else altogether. It is likely that it is the result of one of those because I've had every test on God's green earth to rule out everything else. Half of my body was numb for six months until they put me on Effexor, which really helped. I'm about 8 months free of the numbness now. I also have the intense pain component from the fibromyalgia (which is all nerve stuff) and the high doses of Gabapentin (deadens the nerve pain signals to the brain), Tramadol, and Tylenol are starting to keep it under control so that I can have my life back. This last week is the best week I've had in many months.

Your situation, of course, is a bit different with the disks in your back, but I do know that your situation impacts the nerves like my situation and it might be worth seeing one more Neurologist before giving up on alternative therapies.

As to the physical therapists - the goal is not really to just get 100% better, its just to maintain what you have and get a little better slowly.

The Pain Therapist I refereed to was not the Pain Specialist you mentioned - I mean an actual therapist (mental health types) that specialize in managing pain. This really has helped me along with all the other things I'm doing.

You are in my thoughts - stay optimistic and try to focus on the daily victories.

- Dana
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