Posted , 13 users are following.
Has anyone found a drug or supplements that helps with the pain from neuropathy, I've tried most things but nothing has worked as yet, I just want the pain to end
0 likes, 27 replies
We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.
S1dwayne lincsteve
Posted
Hi mate, I have suffered with horrendous neuropathic pain for 25 years and cannot find anything to help. I have tried dozens of medications, including morphine, and nothing has touched it. Drugs that work for muscular-skeletal pain have no effect where nerves are concerned. I have been down the surgical route, including DBS on 2 occasions. I now await the chance to have spinal surgery to implant electrodes at the nerve root in the thoracic vertabrae. I really hope that your problem can be sorted with medication but, if not, maybe the surgical option could be considered in consultation with your neurologist. I wish you all the best with your quest.
lincsteve S1dwayne
Posted
Thanks so much for your reply, im finding now the pain and the coldness is going up my legs into my thighs, I've tried lots of meds like you but nothing has worked ever, I've even got a nerve rebuilder from America but as yet no relief from the pain and now trying the drug ldn
pippa58442 S1dwayne
Posted
Surgery can also damage nerves. Sometimes it's best to leave well alone.
pippa58442 lincsteve
Edited
Unfortunately, there is very little that can be done with neuropathy because there is no cure. Drugs and supplements, if they help at all, can only reduce the pain rather than get rid of it.Neuropathy drugs cause side effects and are best avoided. I manage my neuropathy with heat treatment and by simply living with it. Distraction techniques can help with trying to ignore the pain. Everyone responds to treatments differently.
lincsteve pippa58442
Edited
Thanks for your reply, what I find hard is people in my life just don't understand how much pain we are all in with this horrendous illness, my pain is getting worse lately, gone into my legs now, I just want to pain free again if possible
pippa58442 lincsteve
Posted
Do you notice if anything in particular makes the pain worse or better? For me, cold, damp weather and over exertion of one arm or the other can trigger symptoms.Touching the area can also cause pain. Knowing that heat helps me, makes it bearable. If you can identify what triggers/lessens the pain, this will make it easier. Rather than focusing on getting rid of the pain, try concentrating on any good days you have. I have good and bad days/weeks. I found concentrating on trying to get full pain relief was getting me down, so I stopped doing this and began focusing on when I have periods of remission. I can never tell when I will be pain free while in Britain, but I know I will have normal nerve conduction from time to time and when I am in Italy in the summer, I will have complete relief due to the intense heat fir three months.
A change of mindset can really help.
lincsteve pippa58442
Posted
I do find heat treatment works with a wheat germ bag heated in the microwave, I've been using a nerve rebuilder shipped over from America, as yet no results from that yet, I do find in the evening my pain eases a little bit so at least I can get some sleep time, which is strange because I've read a lot of people have neurpathic pain through the night
S1dwayne lincsteve
Posted
I know mate, it has completely taken over my life and I only leave the house when absolutely necessary. It's hard to get over to people how nightmarish chronic pain can be.
lincsteve S1dwayne
Posted
I really don't know how you have coped for 25 years with this terrible pain, I've had enough after just one year, people just look at us and say you look fit and OK, they just don't realise do they
S1dwayne lincsteve
Posted
Exactly, it's very frustrating and extremely irritating.
pippa58442 lincsteve
Posted
My pain can set off during the night, so I put my hands under the duvet so the heat can thaw out the numbness and tingling.Often I wake up with no feeling in one hand so I have to be careful which one I use to switch my phone alarm off. Usually, it's my left hand/arm which was most recently injured. My right arm was injured a long time ago and often gives me less trouble which is just as well since I am right handed. However, on one occasion I lost power in my right hand for a few seconds a few years back. It can be a bit of a juggling act to know which arm/hand to use at any one time.
I have also noticed that my back injury can cause my whole left side to be numb from my shoulder to the sole of my foot. That can be weird too.
lincsteve S1dwayne
Edited
Tell me about it, all my friends and family are frustrated by not being able to help me and seeing me in so much pain and distress
S1dwayne lincsteve
Posted
Sounds like our lives mirror each other.
lincsteve S1dwayne
Posted
Yes totally agree with you there my friend, it has really hit me hard,
elaine_10691 lincsteve
Edited
Hi,
It is very hard to deal with on a daily basis. I have been suffering evolving symptoms over 3 + years.One of the things which I am sure has made it worse is not understanding the cause of my both painful and weird symptoms...which has led me to search for answers, especially as I pass all the strength tests, don't respond to cortisone injections and have MRI back results which don't medically constitute enough reason for what I experience. All the searching for answers, which I do independently, has made me probably feel and experience it more. Thinking too much about pain can open more nerve pathways and make it worse....although this, for me doesn't explain why I sometimes feel more weakness than pain -So then I try to work out why for that and my cycle of too much thought about the whole thing continues to exacerbate it.
I also am so much better after I have settled and am lying down - but you can't and shouldn't spend your life doing that. There are clearly numerous and mysterious causes of people's neuropathy but I conclude that my problems have originated from poor postural alignment so that my body is dealing with unbalanced strains and trapping nerves or a nerve(such as the sciatic nerve). I have become more aware of this but it isn't so easy to correct it just like that...or maybe ever!...but I will try. The solution for me seems to be trying to address postural imbalance whilst maintaining strength in as balanced a way as possible whilst trying to get my head and my thinking out of it.....which even sounds like a juggling act when I read that again! Keeping as active as possible whilst pacing oneself maybe.
As for medications and drugs I don't trust any of them...Having said that, I've had days, even this week where I could nearly "eat my words" and go and get the nerve medications from the GP. He would give me them. Some people seem to do OK on them but I know others in bad pain who are on them...and then I wonder are they working for them really? Does the body start to need more "fix" as it gets used to the dose first administered. In short, I'm scared of taking them.
Good luck.
lincsteve elaine_10691
Posted
Hi, thanks for your reply, I've been struggling for a year now with all this pain, it has really hit me hard in every way possible, lost my job and friends avoid me because they just don't know what to say or do for me I'm lucky because I've got such great parents who have helped me in every way possible, without them I don't know were I would be
elaine_10691 lincsteve
Edited
Yes, this is very hard. I also have sort of lost proper communication with several friends and family members. Thank God for my husband and my adult son(who lives away) who are still "there for me"....but they can't do it all. It is, I believe, too much to expect. I have made or am beginning to make some new friends - people who can accept me with my new suffering ( which I never stop trying to overcome). For me, I believe all these adjustments, despite how negative they seem) are necessary if we can only begin to grasp that they may be a part of the problem. It takes time to "dig oneself out". If I ever get there I will be better person with empathy for any kind of pain.
lincsteve elaine_10691
Posted
I'm just finding it so hard to think there is no cure for this illness, I keep on trying different things to help me the best way I can,