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Fed up with neuropathy

Posted , 8 users are following.

hurtyfeetpete
hurtyfeetpete

Hi folks,

I'm new to the forum and looking for a place that I can moan about my condition, and maybe pick up a few useful bits of advice.

A year ago I noticed that the numbness and tingling in my hands and feet was more than the bad circulation I thought it had been previously.

Within a couple of weeks the condition worsened to the point where I was suffering extreme muscle pain in my legs and could not sleep for more than a couple of hours at a time.

Six months and several blood tests laters I was diagnosed with polyneuropathy with no known cause. As far as I know there is no history of neuropathy in my family.

I'm taking Amitriptyline and Gabapentin now which help considerably. But there is no sign that the condition will ever improve, and without meaning to be pessimistic, I'm starting to accept the fact that I'll probably be on the meds indefinitely. 

The thing that I'm really struggling with though is the lack of support. Our wonderful world-class NHS here in the UK has been utterly useless in providing any info or support, and I don't get to see a consultant unless I repeatedly shout down the phone for days on end. When I do get to see one, he just bumps up my meds and says "see how you get on".

To make things worse, my friends and family don't really understand as they see me functioning fairly normally (although I limp most of the time), and then wonder why I have to go and lie down for an hour following any small physical task.

I haven't taken any time off work but I feel like it's getting worse by the month and fear for the future. Driving is already a challenge.

I'm now considering alternative or holistic medicine but don't know where to start. I'd be very grateful if anyone has found anything to be useful, particularly dietary changes. 

I look forward to hear from fellow sufferers.

1 like, 20 replies

20 Replies

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  • Woodie2210
    Woodie2210 hurtyfeetpete

    Posted

    Hi Pete, there is a site based in the US that I have found to be useful/informative.

    Should be easy to find, not sure if you can post names of other sites on here....

    I have tried several of the ADs that we are told ‘may help’ with PN all with side

    affects that I couldn’t tolerate except for Mirtazapine. However, I’m slowly

    withdrawing from this and hoping that I can do without taking this type of

     medication for evermore. I had the tests for this condition including a nerve

    conduction study (unfortunately a punch biopsy facility was unavailable at that

    time) and the results came back ‘unremarkable’.

    I have read on here that one person found milk thistle to be very helpful and

    others have mentioned ala lipoic acid, also there is now cannabidiol oil which

    can be purchased from well known health stores that may make a difference.

    The truth seams to be that  there is little research going on for these types of

    painful conditions in the UK....

    Wishing you well.....

    t

     

    • hurtyfeetpete
      hurtyfeetpete Woodie2210

      Posted

      Thanks Woodie. I personally haven't found any side effects from Amitriptyline, and found that after a month it really improved things. I have particularly suffered from muscle pain in the back of my legs which has subsided enough to allow me to sleep now. I've only been on the Gabapentin for about three months so not sure how much it's really helping. I'd much rather find natural solutions - I think cannabis oil is on its way to the UK soon. I've never heard of a punch biopsy until now. Thanks for the tips.

  • gary44503
    gary44503 hurtyfeetpete

    Posted

    HI, and welcome to the forum. It's a horrible condition. I was on many meds including gabapintin for years. With really no help from dr. I have stopped all meds. Some like gabapintin made it worse for me in time.i go all natural now. The pain will never go away and dose only get worse but my qua

    • gary44503
      gary44503

      Posted

      Sorry,quality of life has improved using natural supplements. I have a daily routine of Cbd oil,pure tummeric ,fish oil and b complex. Also some special tea. It's worked for me some. Good luck finding your way. Gary

    • hurtyfeetpete
      hurtyfeetpete gary44503

      Posted

      Thanks Gary, this is most useful. I'd also love to know if anyone has found cutting certain stuff out of their diet useful i.e. milk, sugar etc.

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