Any UK based Peripheral Neuropathy sufferers out there?

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.

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.... 

​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

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

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.

im 7 years in mine got worse and worse started in my feet now up my leg into my knees and going higher up my leg .Also in my hands upto my elbows and left shoulder on pregabalin and meptazinol and codeine 3 times a day .Cant walk more than 50 metres without paying the price leaves me exhausted hardly any pain free days .waiting to see the neurologist

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

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.