Need support

[Zoey123]

This is the first time I have posted to this board. I was diagnosed with PN about a year and a half ago, have had many tests and the doctors can find no reason why I have it. It started out when I was going to PT for plantar faciaitis in my left heel. After to bouts of PT my arches started burning and throughout the next year and a half the burning and pain have progressed through out my feet calves, elbows, wrist and even my face at times. My feet hurt so bad there are days I can barely walk. The neurologist says by my test I shouldn't be in so much pain. I have tried many of the meds out there for neuropathy and only felt worse taking them. My eyes started burning 4 months ago when I tried the Lyrica and haven't stopped burning even though I stopped taking the Lyrica 2 months ago. My mouth burns also. I have been going to a pain clinic now and am on Vicodin 3 times a day and also take Alprazolam twice a day as needed. I am going to Mayo Clinic next month for more test since I am not impressed with the doctor I am seeing now even though I went to Mayo a year ago. I am at a lost as to what to do. I can't sleep well without a sleeping pill. I guess I just needed to vent and get some support because I am so tired of the pain. I just don't know where to turn or what to do.

[cream9518]

Hi zoey123, welcome to this support group! There are twenty million sufferers like us in the USA. I was diagnosed with PN going on two years and have been on all medications that did not help. I am taking 200mgs of Lyrica a day and it is not helping with the burning feet, and numbness in my legs and the electric shocks going through my back between shoulder blades. Also have sciatica in lower right backside but have no pain going down my leg which usually comes with this disorder. I am not diabetic and have all tests done and the only test that finally came up for PN was a skin biopsy which showed a damaged nerve ending. I have Idiopathic PN which sounds like you have the same problem. Taking 5mgs of Endocet (generic for Percocet) when cannot tolerate the pain. Am on sleeping pills too. Did not want to make this so long, try to stay in contact, wishing you for more better days, God speed.

[Aussie100]

Hi zoey, i am sorry to read you are going through all this and it certainly doesn't help when neuro's doubt your complaints either, i had the same attitude off the first neuro i seen too, turned out he didn't even know the correct test to do to measure those particular nerves i was complaining about, a real ripe goose.
I hope they can find the cause at the Mayo clinic, i believe they do have some very good neuro's there, best of luck anyway.
Aussie

[Zoey123]

Thank you all for your support. I have days where I just don't know what to do with myself. After I lost my job because of this it seems everyone I knew just kind of stopped keeping in contact. I guess they just couldn't understand how I could look well and have so much pain. My husband is very supportive and tries to keep my spirits up, I just feel like my whole life is gone and don't know what to do. I always loved working and going for long walks and can't do either one of those now. I didn't mention that I had total left foot reconstruction 10 months ago after all of this started and still have alot of pain from that. Does anyone else get these vibration sensations under their skin when sitting still or as you are waking up? It is like my flesh is quivering under my skin. Thanks for any information you can pass on.

[snowmelts]

Does anyone else get these vibration sensations under their skin when sitting still or as you are waking up? It is like my flesh is quivering under my skin.

The descriptions of the sensations are so hard for all of us to put words too!
Perhaps you are talking about the sensations of Paresthesia.
Here's a link for the National Library of Medicine about that.
[url]http://www.ninds.nih.gov/disorders/paresthesia/paresthesia.htm[/url]

I tend to call mine the "creepy crawlies" of "Bugs crawling all over my skin"

I do not have the extreme problems you have with your PN.
I have to say my PN is VERY mild compared to most of the what others on these boards expience. Mine is idiopathic but "mostly" under control simply by a very very small dose generic Neurontin. So many people have such bad problems with PN, that I feel very lucky.

I do hope you find an answer.