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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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  • All6boys
    All6boys hurtyfeetpete

    Posted

    Hey Hurtyfeetpete, sadly I've had issues now for 5 years, have had 3 surgeries on my feet, about to have another.... whatever u do try not to let them start cutting.

    I've been on Tramadol n Gabapentin..... although they are about to cut the Tramadol because they say to many people are abusing them (I don't, take 3 a day like I'm ordered).

    Do your research on the Gabapentin......there is A LOT of negative reviews out there, apparently it to is VERY addictive. I take 3 a day, starting around 12pm, noon, then again about 4pm n last at 8pm n by 10pm I can hardly keep my eyes open. Sadly, without it there is NO WAY I can fall asleep. Most negative think I don't like about it is it gives me the munchies, from 8pm to 10pm I can't seem to stop eating.... fortunately since I am aware of this I have cut back my intake through out the day in order not to become obese.

    I totally understand that when friends n family look at us that on the outside we look normal, n don't or can't understand what's going on on the inside......

    Before u get too hooked on the Gabapentin research it, maybe ask ur doc about the addiction, see if there is an alternative.

    I wish you luck sir.

    • hurtyfeetpete
      hurtyfeetpete All6boys

      Posted

      Thanks for the heads up on Gabapentin - my boss reckons it causes memory loss but you hear so many scare stories.

      To be honest the Amitriptyline has been most effective, so I may review this. Because the drugs often take months to kick in, it's very difficult to ascertain their effectiveness. Especially as the condition tends to worsen slowly. So, for example, if I feel the same as I did two months ago when I started taking the medication, does that mean it's working because I would expect to feel worse by now?

      I know exactly what you mean about the munchies. I've never been over ten and a half stone until recently and now can't stop eating biscuits after 9pm. I've also started drinking at home for the first time in my life which doesn't help either, although it sure helps with the sleep.

      Thanks again!

  • Mariefla
    Mariefla hurtyfeetpete

    Posted

    I  have  neuropathy  and  PA.D. 

    I take  neurontin,  a  herb  called  corydalis,  sometimes  CBD  gummies,

    and  ambien  for  leg  pain  at  night.

    My doctor  has  prescribed  Trazodone  and  Cymbalta  but  I  am

    reluctant to take  any  more  drugs.

    RS

     

  • kmb66
    kmb66 hurtyfeetpete

    Posted

    Hi there Pete

    Same boat. Mine started in my right big toe as numbness and pain. It’s now causing a lot of pain and walking is a challenge. I walked the Camino de Santiago just before this started so I’m depressed that this affects the thing I love me to do most, walking. I’m

    On amitryptiline and pregabalin. Done know if it’s working,  it’s still getting worse. I need to work as my wife has MS and is already disabled. I don’t have the option, so I’m really worried and fed up. I’m hoping to try duloxetene next. If you use Facebook, look up a group called Solutions to Peripheral Neuropathy

    And Pain. The guy that runs it has developed a supplement based approach to symptom reduction/ eradication.  I’ve just ordered all the elements and am starting soon. It’s a commitment but if it helps I’d will be worth it. He doesn’t make any money, all ek me ta are on amazon. Take a look.

    Keith  

    • hurtyfeetpete
      hurtyfeetpete kmb66

      Posted

      Thanks Keith. I don't do fleecebook but I will get my wife to look it up. That's the kind of thing I'm interested in.

  • Dotty34
    Dotty34 hurtyfeetpete

    Posted

    I feel the same way.If I could only have 1day free of pain! It is really bad at night and I have to do walkabout several times. Luckily I am retired so no commitments.

    I agree with you that there is not much help from doctors. I find that nobody understands what it is like as I look perfectly normal. I do have problems with balance. So I use a stick now. I am taking amitriptyline 40mg at night and co-codomol .

    sometimes it works if I haven,t overdone walking.

    Hope you can get some relief .

    • hurtyfeetpete
      hurtyfeetpete Dotty34

      Posted

      Hi,

      I found the amitriptyline helped with sleep but the codeine did nothing to relieve pain. As it's addictive I stopped it as soon as I realised it wasn't having any effect.

      Isn't it strange how it gradually gets worse through the day peaking at dinner/bed time?!!

  • pippa58442
    pippa58442 hurtyfeetpete

    Posted

    There is actually very little you can do for neuropathy besides  medication.   I choose to ignore my neuropathy in both arms and hands and rely on hot weather to ease it which works for me.  The doctor wanted to put me on low dose antipressants but I wasn’t happy with the potential side effects and I felt my doctor was playing down my concerns about the medication so I refused them.
    • hurtyfeetpete
      hurtyfeetpete pippa58442

      Posted

      We're currently having the hottest spell in the UK for forty years and it hasn't helped at all. If anything it makes work more unbearable than usual.

    • pippa58442
      pippa58442 hurtyfeetpete

      Posted

      That is very strange indeed that hot weather makes it worse.  I find cold weather and rain immediately triggers neuropathy for me.  I get such an improvement with hot weather.  
    • hurtyfeetpete
      hurtyfeetpete pippa58442

      Posted

      It's been a while since we had any cold weather here so I've probably forgotten how the cold effects it. Because of the overall weakness and tiredness that NP causes it just feels like the heat is draining the last bit of life out of me. My feet really burn too and I have to wear smart shoes to work so not a nice combo!

    • pippa58442
      pippa58442 hurtyfeetpete

      Posted

      For some reason, my neuropathy doesn’t really cause me any waekness or fatigue.  I am able to function at full strength despite it.
    • hurtyfeetpete
      hurtyfeetpete pippa58442

      Posted

      That's interesting Pippa, I assumed it was part and parcel of the condition. You mention the neuropathy in your arms and hands. My hands constantly feel a bit like when you wake in the night and you can't clench them fully. My pain is worse in the legs and feet thought.

    • pippa58442
      pippa58442 hurtyfeetpete

      Posted

      I got neuropathy from falling on my elbow and getting a bad blood test on the other arm. In cold weather I get pain, numbness or pins and needles.  On one occasion, my nerves short circuited in my hand while holding a glass and I barely managed to put the glass down on time before my hand just flopped.  It was coming from my elbow.
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