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Foggy's "Invisible Illness" Support
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Peripheral Neuropathy

I have had it for about 4 years and tried podiatrist,he used laser treatments, complete waste. I had nerve conduction test and 3 Neurologists agreed.At one point Dr. had me on 3000 Gabapentin daily, it did not help. i tried various other meds. and creams, None worked.My pain stops when I walk around house barefoot and no pain when I sleep. Drs. fine it hard to find correct medicine.As soon as i put on my sneakers to go out the pain starts. It sort of feels like my socks are all crunched up. Any ideas?

7 Replies

Hi I have been suffering from non diabetic peripheral neuropathy for almost 5 years now. My intial symptoms started in my hands as numbness and pins and needles which quickly escalated to up both of my arms, down my legs particularly top of right thigh and into my feet. I have had every blood test they could think of with no adverse results other than slightly low b12 for which I get injections. I have had a neck x ray and mri which failed to show anything adverse.

I have been diagnosed now with chronic fatigue syndrome/fibromyalgia, fine fibre neuropathy and ulnar nerve neuropathy of my right arm. I have also been told I have carpal tunnel and cubital tunnel syndrome in my right hand arm. I have had nerve conductivity tests on my arms and legs only to be told my nerves in legs are "fine" whatever that means. Have had my medications changed umpteen times to no advail. I am on 75mg of nortryptiline which I take at night along side cocodamols and Ibuprophen. I also use lidocaine patches and have a ten's machine which just aggravates my neuropathy. Awaiting appointment for ortho to see about op on right hand. I was also referred to a pain clinic which is a joke as all they have done for me is suggest going to group meetings to talk about my pain and a physio who tells me to pace myself and quite honestly I find patronising. On top of all this I have tinnutis, blurred vision at times and poor co-ordination and balance. I feel sometimes because they can't find the source of my neuropathy that it's a case of keep taking the tabs and go away! I am only 48 but the weird thing is my slightly older sister has exact same symptoms, so I have to ask is it genetic?


This sounds just the same as I have - especially the numbness at the top of the right thigh. Like you I have pins and needles in my feet, hands, legs and arms. It is quite variable, but I can't pin down any reason for it feeling better or worse. I have been diagnosed with peripheral neuropathy, but all blood tests have come back fine, I've had an MRI scan that shows nothing but 'wear and tear' and an EMG which showed 'mild damage' in my right leg. I have got another neurologist appointment next week to do a couple more tests, but really just to tell me that '85% of neuropathies are idiopathic' - in other words - 'go away'. I am not taking any medication for it as it is not actually painful, just continual and impossible to ignore. Please let me know if you get anywhere with finding a cause, or if you find any treatments that help.


Just curious , was you father exposed to Agent Orange?


Hi just saw this comment. I doubt it .I'm from the uk and my father was briefly in the army in the 1940's.


I find that different shoes make it feel better or worse. I do have it even without shoes, but there are some shoes that I just can't wear. The best I've found are adjustable walking sandals.


I find with my feet that I am most comfortable in trainers/sneakers. I have had to go up half a shoe size in these to actually feel comfortable. I frequently get the feeling that my feet are being crushed, I wear home made socks because elasticated ones seem to make my feet feel worse.I also find if Im sitting in a chair that if my feet aren't touching the floor my feet go numb and I also get a dead leg.I discovered this one day sitting in a booth in a restaurant I went to move and nearly landed on my face. I find that I feel worse in wet damp weather and not so bad on warm dry days, I was tested for rheumatoid arthrytis but it came back clear. I also find that certain fabrics irritate me so more often or not Im wearing cotton t shirts and jogging pants (how glamorous). I hope the neurologist can shed some light on your symptoms.

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I have the same my socks feel crunched up under my feet. I have no ideas but going to the podiatrist is a waste of time. All she was concerned with was the fact I was wearing slip on shoes which was not good for my diabetes. They are the most comfortable shoes I have and I can't afford to pay £85 for the shoes she recommends. My pain also stops when I walk around the house barefooted.


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