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
Posted
I'm not sure what happened but I had to go through so much trouble to find this group again, I stopped getting messages then they went to my junk folder and then I got nothing. Anyway I have had neuropathy in my feet for 3 years and got it as a side effect from harvoni. My original neurologist did nothing so I went to a new one. I had a nerve ending damage test done, ct scans, xrays, Mri, and blood tests. He put me on baclofen, carbomazepine and nortriptyline. He also put me on gabapentin but I am weaning myself off of that because it doesn't do anything and I have heard horror stories about it. I have asked about something different but he told me that nerve damage is hard to figure out and the meds he is giving me are about all he can do. I know that other people are getting stuff like marinol and other drugs. But they don't listen and they pass out antidepressants like candy which made things worse for me. My feet are always cold and at the same time burning and prickly. Some days I would like to cut them off
philippina78653 claire96831
Posted
Hi ,
I am new to the forum and noticed that most people here have symptoms that I have.
I have been diagnosed with sensory neuropathy which is small nerve damage to the body.
My feet burn like fire and I have bad stabbing pains in them. This happens in my hands as well.
After a couple of years and many tests e.g MRI, blood tests, nerve conduction studies the doc has diagnosed my with sensory neuropathy.
At night I have the most pain and cannot close my feet with the blankets or even the sheets.
My doc, after all these tests and previous medication has now put me on tramazac (tramadol)
1 tab 6 x per day and
Epleptin 300 mg 1 tab 6 x per day.
so I split it up over every 4 hours . I take one of each tablet in this order to prevent me from going through that terrible onset of pain which will start just above the ankle and into the feet. And also on the side of my hand into my small finger and my ring finger.
I noticed with this medication if I take amitriptyline at night it interferes a lot with my breathing . So I rather don't take it.
I am also on Epilum 600mg morning and 600mg night. This also helps a bit.
I wish you all the best
Philippina
kennyatw philippina78653
Posted
Hi, I know what you are going through so I will be fairly quick. I noticed you said you are taking epileptic, that is gabapentin but with a different name. It is used as an antidepressant and is also used for seizures. That doesn't work for me or for body pain even though the doctors say it will. I have been on lyrica and cymbalta which made things a lot worse and I am weaning myself off of gabapentin because I have heard horror stories about that drug. I wanted to be put on tramadol but I am allergic to morphine so they won't give me any. I'm also on baclofen which helps a little but not much. I'm also on carbomazepine which helped for about a week but it does help for anxiety. And last but not least I am on nortriptyline at bedtime. I did try the nortriptyline but it put me in to much of a fog. Good luck to you
philippina78653 kennyatw
Posted
Hi Kennyatw,
thanks for the info.
I did use lyrica and my whole back hit out into on great itch .(don't know how to explain it but it was bad) Plus my hair fell out in patches.
When I noticed that I stopped the medication myself as we where on holiday at the time.
As for the gabapentin , you have got me worried there, as I have not been feeling well since Monday night late . I have intentions of talking with my doc about it.
I have not been happy on this drug nor on tramazac. But my doc says there is nothing else that suites my system and I can only use the tramazac and neurontin ( epleptin.)
I am allergic to carbamazepine (tegretol)
I have a blood test done every 6 months to check that my kidneys are still alright.
I need to see my doc for other reasons but this will be one of them.
I will keep you posted.
Please let me know how you are doing.
With regards.
Philippina78653
kennyatw philippina78653
Posted
Hi, I am sorry but I just saw your email and for some reason it was in my spam email. Anyway what type of doctor are you going to? I would get a second opinion on what prescriptions you can take. Tell him you can not take the gabapentin because they make you sick. That's one of the many side effects. Some doctors don't really care or really listen to you. I have gone through 3 doctors and 2 neurologist because of that. Oh and don't let him give you cymbalta either, that's another one not to be on. Try to get a pain medication or get the name of a pain doctor, they deal with the types of medication you should be getting.
Good luck and let me know