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Any UK based Peripheral Neuropathy sufferers out there?

Posted , 39 users are following.

BigG101
BigG101

I'm slowly getting worse and worse. My pain is worse than it has ever been. My weakness is worse than ever. I've exhausted all treatments and don't know what to do next. Other than waiting to see the Neurologist in the hope of getting some miracle drug he knows about that know one else does, I have no idea if I need to just get used to it because this is how every day is now going to be forever. I've taken no time off work, yet I'm suffering all day and fear I'm either going to lose my job or work myself into a grave. I'm so down and just feel sick of the pain and sick of feeling a fraction of the person I was 3 years ago.

10 likes, 66 replies

66 Replies

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  • Jmac2
    Jmac2 BigG101

    Posted

    Unfortunately I am highly allergic to wool or I would give it a go. I am so sensitive to a lot of things. I know there is risk in all most everything when it comes to drugs,but my question is what do you do? I can't stand the pain. After six years of trying all that has been thrown at me nothing is left,but something that may be addictive. When I have to wear shoes pain pill goes with them. If I stand for along time or even sit for periods of time pain pill goes with it.If a pain pill was not part of my day, I would not have a day,because I would have probably have no days. As I said if I could get along with out pain I would not be a pain pill taker. Outside of vitamins that would be all I would take. Mac P.S. not trying to be hateful to anyone. If I am I apologize.
    • lindagkelly
      lindagkelly Jmac2

      Posted

      Oh wow, I hadn't thought of allergies.  I'm probably allergic to wool too.  I don't know. I haven't bought any yet -  I'm in Arizona and it would be crazy to consider trying them now - it's in the 80's here.  But I thought when I moved to ID I would try them, but I am so allergic to things to - mainly chemical things like perfume and cigarettes.  Don't worry about pointing that out, because you make a very valid point. I'm hoping I can wear them, or wear some other socks underneath them.

      ​Don't worry, I think many of us have problems wearing shoes.  It's just rare to be able to talk to others who understand what that's like.  I have started bringing along my house slippers at my pain doctor's office.  I decided I could get away with it there.

    • joh13240
      joh13240 lindagkelly

      Posted

      I wear the will socks year round anywhere -20 to 90 deg f. the wool regulates the temp of the skin to 98.6

      if you are allergic to lambs wool try camel, merino wool or alpaca.

      the allergic reaction to wool just might be what you need to help with the pain.

      i found that buying loose fitting socks(hunting boot socks) work better.

      the wool needs to come in contact with the skin in order to work.

    • lindagkelly
      lindagkelly joh13240

      Posted

      Well, I had no idea!  I just googled it, and we have an REI store that sells lightweight Merino wool socks for $7.95 a pair.  I'll have to wait until this weekend, but I PROMISE I will have my boyfriend take me there and I will buy at least 2 pair to try out. Thank you. 
  • BigG101
    BigG101

    Edited

    Hi All, it's Big G here.

    I've been reading everyone's comments with great interest and want to thank you all for your support. It is at least comforting to know that I am not alone and that there is a great community of people who understand and can sympathise with the daily stresses of living with PN.

    Since posting the original message last week, I have had my first long awaited appointment with a Neurologist and I finally feel like I have answers to some of my most important questions.

    Firstly, I had not appreciated the fact that there are two types of PN, Axonal - relating to the inner core degeneration of the nerve. Or Demyelinating - relating to damage of the external protective sheath of the nerve structure.

    In broad terms, generally Axonal is irreversible and Demyeliniating is reversible.

    I have Axonal Peripheral Neuropathy and it will continue to get worse. However, despite the fact that I thought I had depleted all drug options, I am actually far from it. There are lots more options.

    However, this is where it is proving extremely useful that I kept a diary of all the drugs I tried and the results. In my case, one of the drugs I tried was Carbomazepine. Unfortunately I had awful side effects with this drug, but it was the only drug that actually helped with the pain. So according to the Neurologist, this particular drug has a specific chemical group, meaning that we can now try lots more drug options that fall into the same chemical group. As of next week, I start trials on the first of many new options and I have all my toes and fingers crossed for good results.

    I am still on the Fenanyl patches, 37.5mg every three days and these do help a bit, although they do completely wipe me out and I have to fight like hell to stay awake.

    The hope is that I might be able to reduce these if the new drugs work. Let's see?

    With regard to my long term prognosis, the Neurologist is hopeful that I can avoid a wheelchair in later life but I am likely to still need my walking stick

    Anyway, within the next couple of weeks I

    Should be able to update you all in respect to my progress.

    Thanks again

    Grant.

  • lindagkelly
    lindagkelly BigG101

    Edited

    Hey are you okay? Is your PN from an injury or an illness?

     

    • BigG101
      BigG101 lindagkelly

      Edited

      Hi Linda.

      Now they have established the type of PN I have is 'Axonal' this means that it can't be injury related as it is degenerative, so because I am relatively young at 42 and that they have ruled out all the other disease related causes like diabetes etc,it is most likely to be genetically inherited.

      Like everyone else. I am in pain constantly but then intermittently I get additional shooting pain and burning pain that is unbearable. I can hardly walk after rest and then when I do walk I can't walk or stand for any period of time without horrific pain. The pain is mainly in my feet but also in my hands too. It's no fun to live with and in the last year I've lost my driving license which resulted in me losing my job, where I would have been for 10yrs this June, so I've lost my independence too.

      Altogether it's not been a great three years with PN but I am hoping that the Neurologist will get me on the right combination of drugs.

    • lindagkelly
      lindagkelly BigG101

      Posted

      Are you in the STates? I live in Arizona - near Phoenix, and we are so lucky to have a service called Dial A Ride here for people who have been certified as disabled.  In the area called the East Valley - which is a bunch of small cities to the east of Phoenix, Dial A Ride is serviced by a cab company and we can get to anywhere we need to go in the East Valley with a cab ride at the cost of $4.00 each way.  If you live in Phoenix, they use a van service for the same cost but it takes you longer to get places. The idea is that it is supposed to be serve you like bus would.  They have Dial A Ride all over the states, but different states implement it differently.  I don't know what it will be like in Idaho where I'm moving this fall.  Do you live in the US? If so, check with the Dept of Transportation to see what your state offers.
    • lindagkelly
      lindagkelly BigG101

      Posted

      Oh, and I read more about Peripheral Neuropathy. I saw one article that said there are actually 100 different kinds of PN.  Mine is injury related, and may have been reversible at one point, I'm not sure, but it is permanent now.  I'm so sorry to hear that you are going through this - and you are so young to be experiencing it!  I hope the doctors can find a medication or a treatment that will benefit you!  One thing we cannot do is to let it get us down too much! I looked up information about the therapeutic effects of wool, and I was astonished!  That's amazing!  I don't think I'm allergic because we had wool blankets from the military when I was growing up. I am going to have to get some wool socks and I think I may have a wool scarf I will look for.
  • keith38551
    keith38551 BigG101

    Edited

    I'm in UK too. St Albans. i'm in the same boat except I'm 63 so retired early. I've just been diagnosed (3 weeks ago) with length dependant axonal sensorimotor polyneuropathy. I've had the EMG/NCS tests which my neurologist sent me for. over the past 3 weeks it is getting worse which is worrying me. It was just pins and needles in feet. Now 3 weeks later it is up to my knees with calves twitching, cramps, and feet more numb than pain. I feel constantly weak and exhausted. More blood test sent off, but no cause found yet. I have looked at Dr Google and he is quite pessimistic. It is moving very fast I think - or is it how it happens sometimes? anyone know? I doubt I'll be able to drive soon. its just constantly there and driving me mad.

    Oh yes the shoes.... pain across the top of both feet. Easy on the shoelaces. I'm losing hope fast. 

  • antig
    antig BigG101

    Posted

    I get burning but under my legs by my butt. Difficult to sit.
  • Darcey
    Darcey BigG101

    Posted

    Hi 

    Does anyone have tight feeling in feet? Has anyone tried infra-red light therapy to restore normal sensations?

  • BigG101
    BigG101

    Edited

    Hi All. It’s me again. Big G from Cumbria in the uk.

    I’m still struggling. I am now on 100mcg Fentanyl Patches and increasing. It seems I have to ask to have the dose put up every 3-6months and they won’t do this forever so not much light at the end of the tunnel. 

    I was not too pleased with my Neurologist so asked for a referral and they retested me and I’ve now got conflicting results which has just added to complications as I still have all my symptoms despite the doctors being in disagreement as to my diagnosis. 

    A few weeks ago I had a really bad few days where I suffered from Rynauds Phenomenon! 

    Anyone else had this or know why I might have had it?

    Apparently it suggests that I have an underlying immune system problem or Lupus or Scleroderma. Was tested for Lupus previously and don’t have it but don’t know much else about the others. Just thought I would share this with you all. 

    Still only wearing Crocs and loving them. 

    Cheers. Grant. X

    • robert85
      robert85 BigG101

      Posted

      Hi, rynauds I suffered for year before I was diagnosed coeliac

      Vit k2 deficiant.

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