Extreme Burning in hands, feet, and other parts. Muscle twitching. Don't know what to do anymore!
Posted , 8 users are following.
I've suffered from nerve pain for several years, at times it has been unbearable. I saw a neurologist who was very unpleasant, basically said it was an "airy fairy condition" i basically called him an arsehole as i had been waiting for that appointment for months. I was re referred to another neurologist some time later, who did a nerve conduction test. It showed a trapped nerve but nothing else. Eventually i got prescribed amitriptyline to take at night. I found it didnt go but it dulled the pain and i was able to function and carry on working.. i still get flare ups and all the doctors have been able to give me is morphine that knocked me out and made me feel sick and i couldnt function. I have been prescribed pregabalin and gabapentin in the past but they affected my coordination. Anyway i have been on anti biotics this is the second course for a lump under my arm. Since i have been taking them and now finished . The amitriptyline is not working. Im in extreme pain. The symptoms are like being pricked all over with hot needles. Intense burning in hands. Sharp needles in feet. Ears feel like pressure and pulsating. My eyes burn inside. Twitching of muscles. I havent been able to work the last two weeks and i have a mortage to pay. I have a new referral to a neurologist in June., but im not sure if i will be taken seriously or treated as it seems little is known.. if they can do like a punch biopsy and find there is damage to small nerve fibres. Can anything be done. I had a car crash in 2003. I had nerve damage. I had a compound fracture to knee cap, i have a tear to the skin from the bone ripping through, that part of my knee can not be touched as its like being stabbed. Also the tip of my tongue was bitten off . Broken collar bone. Anyway 9 surgeries in all so i had alot of crush injuries to the nerves. However i feel its largely ignored and ive been fighting for this for years. I now feel depressed and isolated and lonley. If anyone can offer any advice on how they cope i would be grateful. I feel the pain is crushing me as a person. I have 3 young children and everythings a struggle. I want to be positive and happy like i used to be. I do have good days and appreciate them more. But i feel this burning pain is the worst sort of pain ive ever experienced. Thankyou for listening to my long message. Hope to hear from some people that understand.
0 likes, 20 replies
kennyatw claire96831
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I wish I could tell you more but I have peripheral neuropathy in my feet. I had a nerve conduction test done by my first neurologist and he was supposed to make a plan but never did, I switched neurologist and the new one is better. He told me nothing can be done for nerve damage and he gave me gabapentin which does nothing so I'm weaning myself off of it plus I have heard really bad things about it. He also gave me baclofen and carbomazepine which helped for a couple of weeks and then started to bother me again. There are some days I would love to cut my feet off. I am trying to get something like tinzandine or Norco but so far no luck. I am also on the medical marijuana and CBD which helps a little but not much so I'm still searching for relief. Good luck and I hope you have better luck.
kennyatw claire96831
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I just wrote you a nice long reply but for some reason it is being moderated but if you don't get it in a day or two let me know and I will try to get in touch with them and find out the reason why
claire96831 kennyatw
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kennyatw claire96831
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sandy2018 claire96831
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Dear Claire, hang in there, keep pushing and don't give up. Medicine is advancing so fast. Eventually something productive and helpful will be found. Keep reading reaching out and telling others. Keep going!!
claire96831 sandy2018
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elizabeth20203 claire96831
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Hello Claire, i can understand Nuropathic pain, i myself suffer from it in my legs. I have had several surgeries over the years so believe this is where it stems from. I wish i had the answers but unfortunately i haven't. I currently take Pregabilin, i have been on Amitriptyline and Gaberpentin in the past also. Has with most drugs there are side effects and i have come to the conclusion that we have to weigh up these. Pregabilin does help me get some sleep, thou it can take along time to drop off. How Nuropathic pain effects me is a burning sensation and it feels like someone is stabbing pins in me. I cannot bear the bed clothes on me and even everyday clothes like trousers, leggings etc irritate my legs. Even has i am typing now the burning pain is there. I try to distract myself from it, the worst time is in bed trying to sleep. If anything it helps to know that we are not alone and not imagining it. My Consultant is dissmissive when i mention it, the last time i said " it's not you suffering is it " There is no cure so nobody wants to know. If you do find anything that helps please lets us fellow sufferers know.
Elizabeth
claire96831 elizabeth20203
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I'm so sorry to hear that you are experiencing that awful burning. Hot poker's/ being stabbed with pins, too. Yes I believe it's damaged nerves, and must be linked to surgeries. Though those were to my knee shoulder and face so not sure why the burning is worse in hands and feet. Yes it's quite lonely, I have felt like I have had to fight for help with this. Doctors and specialists don't really know what to do, and even felt like I wasn't believed. Even though burning pain is associated with nerve damage. I have good days and bad but this flare up is the worst I've had. Just totally desperate with the pain. Sitting there with frozen peas on my head hands and feet.. It's scared me to think there's no cure. Can I ask what you do about working. I see it's listed as a chronic pain condition . If this is going to be so severe I'm worried how I will cope money wise. I don't mind being on medication if it controls it like it was doing for years before all be it for the odd flare up. It's so nice to hear I'm not on my own in this . Thanks for posting
1Coconut claire96831
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Claire, your pain sounds so terrible! I am so sorry you're suffering so, with so little help. I know nerve pain can be excruciating. I struggle with the same kinds of stinging, burning, electric current sort of feelings in my feet, ankles & up my shins, but not unbearably, like yours. I also have some numbness with it. I really feel for you.
I know people with fibromyalgia say that some antidepressants help, like cymbalta or zoloft. Don't know if that'd do much for you. I would try hypnosis. It helps IF you practice it DAILY. Without fail. Find a good hypnotist, have him/her make a recording for you & use it religiously. I know, it sounds goofy but it's worth trying. Don't judge the effectiveness until you've practiced it daily for a few months.
What are your favorite distractions? My husband deals with severe chronic back, hip and neck pain, with shooting pain down his legs when bad. He copes by sleeping & distracting himself.
Above all, be patient & compassionate with yourself. Give yourself tons of credit for all your work dealing with this, and everything else you do. You're amazing!
I wish you healing & peace,
Deb
kennyatw 1Coconut
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I see a hypnotherapist weekly and he is good, it isn't actual hypnosis but more of a relaxation technique where you close your eyes and think of a safe place. You basically do that and deep breaths slowly with it quiet or with soft music or sounds playing in the background.
claire96831
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Thankyou. I have had a couple of better days that I've really appreciated. But the last two evenings. I'm in a bad way. The burning in my hands is unbearable it's also got in my chest. My ears feel affected and altered. I've got another two weeks on sick leave. I don't know why this is flaring up so bad. I've been using ice packs I'm getting desperate
1Coconut claire96831
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Can you apply for disability income so you can get some time to heal? It sounds like hell, what you're dealing with.
kennyatw claire96831
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donald12062 claire96831
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Pain is a horrible thing to have 24/7 !
I feel your pain claire ! I know exactly what you are going through !
I've had periphile nerve pain in both feet and toes for the last 6 years !
I've tried everything imaginable to help decrease my pain with 0 success !
I've told everyone on this Patient Forum that I'd keep in touch !
I have some good news to tell everyone and that is I'm getting a nerve stimulator on a trial basis for a week a week or 2 and if I can get 50 to 70 % pain relief I will have it permantly implanted !
I will continue to keep everyone updated on how my nerve stimulator is helping or not helping me !
donald12062
claire96831 donald12062
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