Hello everyone, I hope you had a good Christmas
As you can see from my post heading I suffer with Neuropathy and wondered if anyone else does. I have had this since 2014 and it has steadily been getting worse., my medication has been changed and now the Consultant wants it changed again, at the moment the pain is a lot better but I still lose sleep. I am also seeing Physio and OT, any tips from fellow sufferers would be appreciated
What medications are you on?
At the moment I am on 600mg Pregabalin & 52.5mg transec patch although I saw the consultant a week before Christmas and he wants to change it again. I have an advice sheet (?) he gave me to give to my Gp when I see her on 15th Jan. Before that I was on gabapentin 12 x 300mg & Amitriptyline, can't remember that dose
Yep I'm on the same, that's the highest dose for pregabalin, I was told, I take 30mg of mirtrazapine at night time, and have lidocaine patches for my calf muscles, I couldn't do the amitriptyline tablets for long, I ended up with shocking headaches and would often wake up shouting in the middle of the night, so the sleep pattern is also not good, hopefully you'll get a few more folk guys giving you some more input, thanks
Hi oliveOyl, I'm a long term sufferer with PN, and at the beginning of diagnosis I was at the doctors nearly every other week, and unfortunately the treatment is very limited, I've done the pain clinic and had exercises to try and "ease" the symptoms and have tried most medications and my symptoms are still as prevalent as they were nearly six Years ago, and some days and nights are definitely worse than they were at the beginning, the numbness and pins and needles are constantly there, along with muscle twitching and burning feet it's a very depressing condition, knowing that the condition never eases up, this is probably not the news that you want to hear, do you know what caused your PN?, And I also feel that I've been dealt a double blow, as recently I had a feeling that I was vitamin B12 deficient (low), and a blood test confirmed that, and this I feel has added to my symptoms, and some people who are suffering with PN can have stomach issues, which is why I've ended up being on the low side of B12, had the injections, and now on them on a 3 monthly basis, so quite a lot for you to digest, it's very difficult to be confident that the symptoms will disappear, and I suppose age also can be a factor, I'm a male in my early fifties, and eat a healthy diet, and don't drink alcohol, I unfortunately do smoke, but PN can be caused by many health reasons and if you know why your condition has started that is a beginning to understand this condition, as I think this can be a stumbling block, you might be fortunate and the mixed signals between your brain and nerve endings might be able to re-engage, and you may have to go through various tablets before you get something that relieves your symptoms, so it's a long journey and all fellow sufferers have a different situation, as we are all individuals we all can have different results, so hopefully you'll have a successful outcome, thanks
Hi CB1963, thank you for our reply. Like you I have been to my GP a lot, it seemed the meds were working then around a month later the pain was back. At the moment I am on pregabalin & transtec, the patch started as a 10 I am now at 52.5, saw the consultant a week before Christmas and he has decided the meds aren't working so has given me an advice sheet(?) which I have to pass onto my GP, this has instructions to wean me off the current meds and onto a new lot
My NP is in my hands, mild burning, pins and needles during the day and then the awful burning at night, I have been to the point of wanting them chopped off, thankfully for the last 6 months I haven't felt like that, but of course, you know what the pain is like. I also get an electric shock feeling going down my spine, paid for acupuncture last January, no improvement and in July was sent to pain clinic and had electro-acupuncture, pain still ongoing.
At the moment I am seeing physio and have been since June, OT have been involved for a couple of months too. Have bought a book 'You Can Live With Neuropathy', this has 365 tips but not found anything I haven't already tried. I have worn gloves in bed hoping the warmth would help, put my hands around a milk bottle straight from the fridge, BIG mistake, have a meditation cd but I really don't need help going to sleep, just staying there! Of course, where I am awake at night I fall asleep during the day
Having it in your feet must be worse because you need to walk, I feel for you. Do you have problems with sheets touching them and making it worse? At the moment no-one knows why I have this, although I do have under-active thyroid and I have read that could be a reason, none of the other 100 or so reasons apply to me so I suppose if it isn't the thryoid I could come under the title of Idiopathic NP. By the way, I am a 68yr female
Yes I often think about the amputation of my feet, but we'd still get the "phantom" pains still, I don't like my knees touching anything and I keep my feet out of the bed, I have to be careful with running a bath I burnt my buttocks in the bath, didn't realise how hot the water was, as I didn't understand the condition at first, wow, I certainly learned after that mistake, I don't like even having socks on, my feet feel like they're on fire 🔥, even in this Cold weather, yep you'll have to go through the weaning off period of tablets and ultimately the change over of tablets for me didn't do anything, have you had had your blood test done for vitamin B12, I always presumed that when you get your bloods taken it covers everything, however I questioned the nurse who was testing me for diabetes at the time said they only tested for that condition, so bear this in mind, unless of course your on vitamin B12 injection ls already, sorry for being nosey but all the information might help you, I also take omeprazole on a long term basis and this can affect body absorption of vitamin B12, and I think this is also an interesting point, thanks for your reply, yes a very depressing condition and a lonely one, so all in all not the brightest situation to be in, I'm sure that I will be following your thoughts along the way, thanks
It's good for me to have other sufferers input and to have someone that actually understands the pain as this is a hard condition to describe. Would I have really believed how bad the pain could be if I hadn't got the condition? That would depend on the person telling me they had it
I am signed up to getting my results online at my GPs surgery and did check my bloods after you mentioned B12, I was checked for this and the result was fine. I really do have a fantastic Doctor, she is so thorough and has been very good when I have sat in the surgery crying as I have also done at the hospital with the various people I have seen.
I have done quite a bit of research and found 2 of my health conditions (I have several) that could contribute to this..under-active thyroid & arthritis. I have arthritis of the hip & spine, which is also crumbling and one medication that could be the culprit, statins
I will also be following your post, I had a good nights sleep and hope you did. Have a good day
I’ve had severe neuropathic pain in my hands for nearly six years since having surgery for cervical stenosis. I’ve tried all the recommended drugs but nothing works so now I just live with it and find things to keep me distracted. Weather changes like low fronts and strong winds make it worse.
I take two valerian tablets a natural remedy to help me sleep and half a tranquilizer in the night if I can’t sleep.
It does help.
You're right Suzyhayes, nothing really works, they only lessen the pain slightly. I know the pain is here to stay along with loss of balance, co-ordination, lack of sleep etc it's just nice to speak to someone who also suffers because they know the burning is real and painful. I am a positive person and believe that one day this pain will be bearable, that's all I want
If it were not for the pain I would sleep all night, never had a problem, still go to sleep easily, it's only when the pain hits that I wake up but, since going on the higher patch I wake less - used to be anything up to 5 times a night, its down to one or two at the moment - and pain is slightly easier. Of course, this could all change when my body gets used to the patch
I love music, reading, crosswords and can't stand sitting around so I'm always finding things to do, not easy in the one bed flat I now live in. I used to garden but not got one now, I walked for miles, still do walk, but nowhere near as far or as fast but that's due to arthritis not neuropathy.
I keep being told by physio & OT to pace myself, I am slowly learning to do that
Hi, I totally appreciate what you are experiencing. I have GPA, diagnosed in 2016, during the worst of my condition my feet and fingers went black, since then I have suffered with PN. I have been on amiltripline, now on pregabalin, it’s not working. I struggle with sleep, again not going off but staying asleep as the throbbing burning sensation, where my feet feel they are in fire wakes me as does the electric shocks shooting up my leg to my pelvis, such a weird and strange pain it sometimes has me tears because it’s just relentless. During the day walking and standing and sitting, means my feet feel like I’m walking, standing on thousands of needles and sitting at a table or desk and my feet go numb so struggle to stand, balance wise as can’t feel my feet. The result is I cannot drive any distance, walking any distance is a real issue as it gets worse, legs go, feel unbalanced and then suffer even more at night. Same with standing. This is a horrible, life impacting, result from having GPA and no one fully understands. Like other responses, I cannot bear anything to touch my feet, so at this time of year is difficult as wearing socks, even shoes, hurts my feet even more. Taking pain meds do only slightly mask the pain and severe discomfort, but do not rid me of it so it’s a 24/7 issue I deal with. Also my consultant in Cambridge advises this will be long term result, if not a forever part of GPA. So yes as well as the other issues from GPA, this is something very difficult to deal with so appreciate how you feel. Every day is a battle, but I won’t lie it does impact my life, a lot, as well as other issues from GPA. Anyway I think it’s alwsys quite reassuring that you are not alone it what you experience, as it sometime feels quite a lonely place. Good luck and best wishes.
Hello Olive, Iam sorry that you suffer this problem, it has afflicted me for more than a decade now, and throughout that time it as continued to progress to the point that I can barely walk, primarily because I have no balance or forward momentum. I do not take any medication whatsoever for this, since mine is an idiopathic condition without a recognised underlying cause, I have very little pain, just two useless legs that as progressively reduced my world, from a very active sportsman, gardner and dog walker to near housebound situation.
Over many years I have consulted many consultant spec. and others in the medical profession, but the truth is that very little can be done, since there is no cure for this problem, and I think that the sooner one accepts this fact, it does than help you to mentally address the issue, and make the best of a bad deal.
I can offer support, but little else, and I wish you well and hope that you are able to establish a comfortable state, and come to terms with a very debilitating condition.
Hello patjess, thank you for you reply. I am sorry to hear you have had this for so long, you don't realise how it will affect you do you.
Apart from this terrible burning pain, I too have the loss of balance and co-ordination, I am always covered in bruises from falling against something,
I have never been told what has caused my problem and there are over 100 reasons why this can afflict you. I have done a lot of research and as you pointed out there is no cure and you have to accept that. I always say 'I've got it, don't want it but I've accepted it and I get on with life'
I do have 3 things that may have caused this - arthritis - under active thyroid and I am on statins. Whenever I mention these to anyone dealing with me I don't get a reply so I'm thinking they have no idea and possibly it is idiopathic in my case as well
I am on medication to try and ease the pain, I have sat crying in the middle of the night with this - why is it always worse then? - even the consultant can't answer that one and I have cried in front of my GP, physio, OT & the consultant
When this began I thought oh this is easy to deal with but then after about 18mnths it decided I had had it too easy and bang! I felt as though I'd been hit by a speeding train. It's one of those mysteries of life, sometimes the medical profession are at a loss too.
I hope you have an easier day today
Hi there, I just read your post and noticed you are on statins. If you look up statins and neuropathy you will see that statins increases your chance of developing this nasty disease 14 fold. It could therefore be the reason you have neuropathy. I was routinely put on statins and went through hell only to be told later they were not needed.
Hello Emma2017, I found statins mentioned as a possibility, also arthritis and thyroid problems. I have both of those too.
Like you, I am inclined to think it is the statins, they do seem to cause problems in other ways too, but when I mentioned it to my GP and Consultant I never get a reply
Hi OliveOyl,
I suffer from Hereditary Peripheral Neuropathy in my feet, and have suffered from it since 1984, so about 35 years. I went to the best doctor's in the USA, they did a third bilateral surgery which failed, and gave me the diagnosis while having a 3 year old and an 8 month old. It was devastating. They said nothing could be done, don't come back, read the Bible, and I would suffer for the rest of my life. The only way to control the pain was monitoring my mobility, so I spent many years in a wheelchair. I never took anything for pain except about 8 years ago. I now take Amitryptiline, Duloxetine and was taking a very small amount of Lyrica, which helped more than anything, but I only take it when I feel I need to, which isn't really how the medication is prescribed.
I have done far more physically than I had ever hoped. I got into cycling, and have ridden all over the USA and Canada. Getting away from the pain in your head is far better than relying on pain pills.
I try and reach out to people with neuropathy to tell them to never quit, never give up, and don't let the pain take over your life. It can destroy relationships, jobs, and life if you let it.
Don't. Hang in there. Feel free to reach out to me if you think it would be helpful.
Carla
I have the same issue as you, but treatment will depend on the reason for your condition.
let me know a little more, it may be we can share tips, thank you,
Sorry OliveOyl, I didn't scroll down and read the rest of the posts.
I have it in one leg, it started in the ankle / calf (sprinting injury) and has steadily worked its way up to my hip. Best thing for me is not to walk, but that is not a life, and I work full time so I have to use pacing to be able to do this. I bike instead of walk when possible, and still exercise 3x a week. In terms of sleep I find 25mg of amitriptyline makes me sleep really deeply, I never now wake in night due to pain.
Like you say, nothing gets rid of it, but I try and de-sensitize my leg using brushing with firm long strokes. I have also just started to look into and use mirror therapy, anyone else? to try and see if I can re-set the faulty nerve messages. I believe my original injury is healed and I am dealing with a chronic pain cycle.
anyway, best of luck, have a good day, lets keep sharing,
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