Any UK based Peripheral Neuropathy sufferers out there?

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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.

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  • Posted

    I hope you are doing okay today.  I know how depressing it can all be.  It's painful for me to wear a shoe or to walk.  My doctor put me on gabapentin which has helped a lot with the painful pins and needles. I could not tell you about the weakness as I have not experienced that so much.  Actually, maybe that's not true.  When I was still working and had to walk a lot there were days I felt that my leg was going to collapse out from under me.  I quit working over a year ago and I'm waiting social security disability.  I got cheated out of my private insurance disability by 3 days.  Thank goodness my boyfriend is supporting me. They are also starting me on amitriptyline which I plan to take only at night because I know that it will make me sleepy, but I have found it is the number one drug prescribed for nerve pa in.  Good luck to you, and hang in there.

    Linda

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  • Posted

    Hello BigG101, the only relief that I have found that allows me to lead a normal or semi life is demerol 4 times a day every six hours at 50mg. I can still maintain while on it. I have days where putting on shoes is like tightening a vise on my feet. My lags fell like I have weights on,they feel heavy and weak. I have tried everything on the market,only to suffer with side effects. I had to quit working because it hurt to stand long or sit for long periods of time. So I can relate to how it is. I pray you are able to find some relief from someone who actually believes how you feel. I went to several doctors before I found one that listened to what was going on. Some thought I was out for the drugs. Will keep you in prayers. Some days that is all I do,to keep from crying or being in depression. Will be looking for post on appt. with Neurologist. Jmac
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    • Posted

      Dear JMAC2,

      Boy, you are the first person who has said that it hurts to wear shoes. When I put shoes on, it hurts across the top of my foot - like someone is putting shoes on that are 2 or 3 sizes too small.  It also hurts on the outer side of my foot.  I found a map so to speak that shows that the pain on the top and side of your feet is caused by pinched nerves at L4, L5, and S1. I had surgery hoping that it would help, but it didn't. On thing that does help is that my doctor prescribes lidoderm patches.  I put a lidoderm across the top of my foot, and I am amazing how much it helps with pain.  Do you get burning and tingling and numbing in your feet - like needles coming out of your toes. Well, Gabapentin helps with that.  My doctor has built up my prescription of Gabapentin to a fairly strong dose - I take 3 800 mg tablets at night and 2 in the morning. For some people, it makes them sleepy, but it hasn't done that to me.  I recently read that for nerve pain, which is what we have, that amitriptyline is more effective than pain killers.  I am just now starting to try it again.  I was on it  years ago for headaches and it made me very sleepy and I gained weight.  So because of this, I am only going to take it at night.  But I remember, I sure slept good.  They say the  of them work together very well.

      I had to quit working for the same reasons as you do.

      I just recently went to a new pain management doctor and they gave me a sympathetic nerve block at L3-L4. It stopped the pain in my legs for several days.  So they proceeded to do a radio frequency ablation, which is where they burn the end of the nerves.  For a few days afterwards my back was actually more sore and tense and tight.  It hurt.  Then last week I had a good day - with my foot.  Then I had another good day.  Then this weekend, I had 3 good days in a row!  Naturally I overdid it and went shopping all over Home Depot and the grocery store, so my back is sore.  In fact, I'm sitting up typing all this, and I know I shouldn't be. 

      The other thing to investigate is the Spinal Cord Stimulators.  Does your back hurt too, or is it just your legs?  If it is just your legs, you should ask your doctor to send you to a neurosurgeon or a pain management doctor where you can talk abou tthe Medtronic Neurostimulator.  It's like an internal TENS unit.  It helps a lot with nerve pain in your legs.  Here's the 1 800 510 6735 number. Not sure if that will go through to you or not, but that's the number to call them.  The other SCS is called the Nevro Sensa HF10. It's only been in the US a few months and there are some serious problems with the battery.  But from what I hear it can be very effective with both BACK and LEG  pain.  But I would wait on that.

      Good luck o you. Take Care.

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    • Posted

      Hi Linda,

      Lidocane just looked it up its an anasthetic, so maybe they put that on your leg before the needle goes in. Or maybe they have it as cream, anyway next time I am at the chemist I will ask. But I have heard that it helps. Like Ibuprofen Extra Strong or there is another one that you can get extra strong too.

       I had a good nights sleep one night and it dawned on me that the Paracetmol/Tramadol/2 Lyrica plus the rubbed in Ibuprofen probably worked too well ... I'm still here anyway lol

      A friend on ADRSupportUK forum had an ablation and it didn't help him either, so who does it help.  I don't think they know what to do, and so much charity money goes into research for cancer and other illnesses and back pain isn't one of them.

      You were talking about your feet, do your feet or legs go hot? Like burning.  I do know what you mean about shoes though, my physio told me that I would have bunions, I can't see it.  But I too have to be careful about buying shoes as they can rub on that joint. Sometimes I do get pins and needles in my big toe on the side that is the problem but nothing that I can't stand.  I think its dangerous if you have pain there all the time.   But you have cracked my thoughts there.

      The amytriptoline, made my stomach bad, but its an idea for night time.  I don't sleep either, I get up maybe 4 times a night I have a theory, it may not be a good one, but if your bowel/bladder is full you tend to get more pain.  But it maybe is a load of rubbish.  

      I also hear what you say about sitting at the computer, my partner keeps on telling me that, but I did email you once on my tablet, I got so far, and could type any more, I held the tablet up into the ceiling and still couldn't get the wifi signal.  

      I read somewhere that spinal cord stimulators have problems with batteries and see that you have read that too. I think the UK trails behind the States on treatment. They are so frightened that they will go over budget...  I have an idea that the surgeon in Valencia did a message to the pain people about a stimulator but no I don't want it but it seems that I can talk and they don't take any notice anyway.  What they did in England Spain doesn't want to hear.    Just read on from the pain stimulator about the battery, sorry en poco en poco (little by little I am reading your upload).

      So bear with us BigG101 some of us will have ideas.... 

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    • Posted

      Hi Anna,

      ​I am amazed that you walk 1/2 hour per day.  Good for you.  I keep saying that I am going to do that.  I would have to use a walker to walk that much. I have a problem walking in the grocery store every weekend. I hate it.  I pay the price usually for 2 days after that.  It is so painful to wear shoes.  It hurts the tops and sides of my feet, and it also hurts to walk on my feet.  Well, it's mostly my right foot, but I am getting it in my left foot now. 

      ​I saw a new doctor at the pain clinic  yesterday.  Apparently, he is in charge of the whole place.  I told him about how my foot gets cold and painful and how the feeling spreads up into my calf and how my leg feels like it is turning into wood.  I asked if he ever heard of that.  He said he had never heard it described that way, but that it was neuropathy.  And that was that...  He asked if the RFA helped any.  I said, well,  now I have some good days.  He took that to mean EUREKA! EVERYTHING IS 100% SUCCESS!  I told him it did not help my left leg though - the way they did an RFA on my spine between L2-L3.  But that another doctor gave me a cutaneous femoral nerve block and that it took the pain away for one day.  This nerve block is done in your groin - on the inside of your leg - close to your private parts.  I got a shot there - and it took away the pain in my leg for a day.  So now he wants to do an RFA there!  I am not so sure I want an RFA done there.  It was very painful to have one in my back, and this area is a lot more sensitive.  I told him about other procedures I have heard of, but I think this doctor only knows how to do RFA's.  So I will have to think this over and do some more research.

      ​Meanwhile, today was not so good.  My foot really giving me some problems - toes burning and foot aching.  I use lidoderm patches to help with the pain in my foot. I just put a big ole patch right on top of my foot and it does help.

      ​Anyway, I wanted to congratulate you for walking.  I am going to have to force myself to do that. Take care,

      Linda

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    • Posted

      Hiya Linda

      Right foot isn't that where the sciatic nerve goes. I have a pain in my foot where you would have a bunion but think its just a nerve. I had a look in benidorm yesterday there were some really nice comfortable leather shoes.maybe next time I go. L2\l3 is a bit higher up than my spine..how did u do it or is the damage hereditry.? I think its awful to have to do your own research but I did the same.tomorrow is Valencia day but not a fiesta day ---- that's next Monday lol again another holiday. You know what they do they have their saints day as a holiday on a Monday then take the Friday off as --- they call it a bridge day. Or if a Friday they take the Monday off. Whast gets me is that supermarkets close on holidays and Sundays. It will change I am sure. And ..... Some of the kids that serve you in shops are so rude.they never look at you when they say hole its all a bit false. So I will do a bit of shopping and wait for peter in the cafe. I quite look forward to Valencia day. Takes 40 mins to get there. The pain comes long before the half hour but it seems my meds do nothing after the first lot in the morning. Yes like you I am looking forward to going to the pain clinic. Just to see what he says. Did you know people running pain clinics have a seminar in Leicester in the uk? So I was told. He gassed on about it and spent 2 mins with me.

      What about going to a yoga class but would it be too painful. I don't know what i would do without it. Have you tried a tens machine. I couldn't wear wool sock the heat would drive me mad like you the temp is v hot 24 degrees today what's the weather with you and do you think affects your pain

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    • Posted

      Hi, I am new on this forum so please bear with me if I make any mistakes. I have been reading all the reports from other sufferers, and I cried. My husband is fantastic, sympathetic, patient but what a relief to chat with others who know what it's like. I have had peripheral neuropathy for about 10 years, it has got progressively worse, to the point where I can no longer walk more than about 20 metres. I am on pregabalin (the new gabapentin), fluoxetine (for the pain). I have had chilli pad treatment and a sympathetic nerve block. I have tried amitriptyline tabs, but I am allergic to them. I am on tramadol and codeine but my doctor wants to take me off them. The pain now is excruciating at times, I feel I have electric shocks going through my feet. I have to wear shoes two sizes bigger than my size. I am waiting to see a doctor to talk about a spinal cord stimulator, but I have been warned there is a two year waiting list! I cannot go out on my own because I fall over easily. It's fair to say my life is on hold. I keep myself occupied and try to remain positive. Sorry I have gone on for ever, I won't do so again.

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  • Posted

    I suffer nerve pain. I take Gaberpentin and it as helped. I also take a low dose of Amitriptyline at night. I have no side effects except tiredness. I hope you can find something that helps you soon. 

    Best wishes.

    Elizbeth.

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    • Posted

      Hi Elizabeth,

      Have you found that the low dose of amitriptyline is enough to help with your nerve pain? Along with the gabapentin?

      Linda

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    • Posted

      Hello Linda,

      At the moment it is okay having the low dose as i have only just gone back on the Amitriptyline. I was on them before a while ago and i went to a much higher dose 50mg, but found i was so tired and struggling to get up in the morning. I think with most of these type of drugs your body gets used to them and you then need to up the dose. 

      Elizabeth.

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    • Posted

      They started me out on 50mg. I slept in until 11 the next day and then kept falling asleep until around 2 pm.  I stopped taking it after I read my DNA report that says I'm not compatible with it anyway.  I'm not sure I should even try - mbased on my DNA report - it does nto work on me as an anti-depressant, so I wonder if it would help me with my foot.  Gabapentin really does seem to help though. 
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  • Posted

    Just got excited and lost the post I was putting up so will do it later.

    Lindia I see is on the job so speak later.

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  • Posted

    Hi

    Yes I've seen 6 specialist about this disease had a EMG which was normal saw another specialist last month who said it was small fiber neuropathy wants me too have a skin biopsy in sept the drugs I take are gabpentin 300mg x9 slow release tramadol capsaicin cream 2-3 times a day now for past / weeks my cheek has been Twitching and impotence which is long standing problem been told in the future I will get diabetes my walking is effected

    I'm not working as I was self employed with my own company as a courier just had a ESA WCA assessment

    Also suffer from CTS in both hands and chronic back problems my lower disk is gone

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  • Posted

    Sorry replied and then somehow lost the reply. so here goes again.

    I think it makes a difference where you live, in Cumbria there were no consultants that knew anything about nerves and discs, might have changed now.

    Age makes a difference too I think

    Tell us what treatments you have had you don't say.

    Exercise?   I do at least half an hours walk a day.  My partner parks the car so that I have to walk home.   But I love yoga.  the NHS do some yoga exercises that you can find easily.   Just do the gentle ones, when I have really bad pain I sit down and put my head between my knees, OK no-one knows me in Valencia but it does help.  OK Linda, I hear you laughing..... 

    I can't tell you how many consultants I have seen but I usually paid to see one with my MRIs or X Rays. I think in England it costs about £100

      I think we all feel for you as we all have the same pain which as Linda says is nerve pain. Have the consultants shown you the MRIs or x rAYS? What do they say.

    My doctor more or less told me that I was telling lies when I lived in England, until my osteopath sent me to get a private MRI/X Ray and I have had a few of those over the last 10 years.  

    All of us are different so what works for someone maybe does not for another person.

    I thought a TENS machine would help, well it does, until you find that outside the home you are pretty restricted, like I lost my wires down a filthy toilet (Spanish as well)   I think I have taken all the things you can think of too, in fact I expect we all can say that.  I am just thankful that although I was at work when the nerves were affected it wasn't long before I had retired and boy did I know it.  I am in spain now and I can tell you that I still suffer from terrible pain.  I did try a trick the other day though.  I found that I walked for 4 hours (yep) and didn't have the real pain that you could have thrown a book at. I figured that I usually put my heel down hard so next time I was out, I gently put my heel down and it worked. But it might not happen again.   

    I too feel like you, that is this it, am I going to suffer until I pop my clogs, I often think the same, but maybe soon someone will deliver something that will help us.

    Tell us a bit more as someone else might be able to help.....

     

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  • Posted

    What have tried for treatment? i have suffered from preferial neurophy forever 10 years now. i have tried just about every drug and treatment imaginable. i had no real luck with any of them, but i have found out that less is better. i manage my pain through a mental health professional. I did not have any luck with the regular/ specilists doctors, they only wanted me to keep trying differant meds. The key is manage your pain and not let it manage you. It is a mental attiude you must develope. there is no real cure or treatment that will make the pain go away. i am using "off label" medications to just take the edge off the pain and to get regular sleep. A good nights sleep works wonders and i take a med to help with that.
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