Living with Neuropathy - Welcome to the group

Hi @maddholly, Welcome to Connect. I have idiopathic small fiber PN. Once I found out alcohol damages nerves I stopped drinking. I have no medical training or background but from the reading I've done if you have neuropathy any alcohol is not going to help your body if it is trying to recover. Here are a couple of articles that may be helpful.

Alcoholic Polyneuropathy Issues & Treatment
-- https://www.alcohol.org/comorbid/polyneuropathy/

Alcoholic neuropathy
-- https://medlineplus.gov/ency/article/000714.htm

Alcoholic neuropathy: possible mechanisms and future treatment possibilities
-- https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3370340/

I know the initial diagnosis of neuropathy can be pretty discouraging but if you learn as much as you can about the condition and find out what helps others, you might find something that helps you. Have you looked into taking any supplements or vitamins to help with the symptoms?

Concerning problems of people with neuropathy having pain wearing shoes, and sleeping with sheets hurting their toes. Search these three topics for some decent solutions: 1. “blanket support for foot of bed”, and 2. “diabetic shoes”, and 3. “diabetic socks”. Pick one that fits your circumstances, and that you can afford. They work very well for me.

I'm on Gabapentin & at first it made me so tired I couldn't take it but now I take 300 mg at night & it makes you sleep better & I am on 100 mg in the morning & another in the afternoon. I'm new to this Neuropathy & I have seen no help with the Gabapentin butI am taking Cymbalta with it & it gets me to wear I do function so I guess it helps to a degree. I just don't want to increase it anymore bc if you stopped it suddenly you could have seizures I have been told. Does anyone know a good med that gives relief.

@tigreyes2004

Finding a medication or combination of meds can take a very long time. All of the meds labeled for neuropathy either did nothing or I had unacceptable side effects, the worst one being Lyrica. It put me in the hospital for a few days. The bummer - it was actually helping with the pain.

I finally had a spinal cord stimulator implant in June, 2017, and it was wonderful!!! I had 80% pain relief. After a year, I started needing to have the stimulator settings tweeked every 3 months. I had been seeing a pain specialist, who took the next step in finding a medication that I could tolerate, and I tried a bunch of off label meds. I was taking morphine sulfate contin before the scs implant, and was able to reduce the dosage, but I still take it because it takes the edge off the pain.

A couple of months ago the pain specialist started me on imipramine, and as I increased the dosage it increased my pain relief. Normally I would have had the Abbott rep adjust my stimulator, but I'm not doing anything until my next appointment with the pain specialist, and evaluate the efficacy of Imipramine. My feet hurt, but it's bearable. I keep my fingers crossed.

So, I would say, don't be surprised if it takes a while to land on the medication that gives you relief without unacceptable side effects. It generally means taking a medication for six weeks to assess its benefit or side effects. My siblings all have taken Gabapentin with good results, but it didn't help me.

Jim

Thank you for your info. I know this is a tough disease to deal with. I guess I will experiment with this Gabapentin but I don't want to take any more because I have Stage 3 Kidney disease & my dr. is worried if I increase it too much. These golden years are not much fun. Thanks Jim. Best wished Tigreyes

I am asking help from you all. I have fibromyalgis, peripheral neuropathy and lymphedema. All diagnosed as idiopathic???. I don't agree and very few tests have been done to prove otherwise. I believe idiopathic is used because it is easier. I feel other things are going on. My question is has anyone with neuropathy found that towards morning light you are awakened by the feeling that your entire body, including face, is engulfed by hot water running through every fiber of your body? I cannot go bed to sleep once this process starts. I almost feel like my breathing is difficult. This along with the numbness in my legs and cramps so bad in my legs and now up the entire leg. I do get up and when the cramps slow down I get in the shower. My anxiety is then over the top. I don't know if these episodes are caused by anxiety or the anxiety is caused by the episodes. This has been going on for almost a year. I have been prescribed Lexapro 5 mg at night to help with anxiety. Well, that's not working. Medication before bed is 5 mg lexapro, 50 mg Elavil (for neuropathy pain) and 600 mg gabapentin. I am now taking 10 mg melatonin for sleep along with 1/2 dropper CBD. Daytime meds 40 mg lasix. 37.5 effexor That is 5 meds prescribed and 2 prescribed by me. I also take (almost forgot) percocet as needed during the day. This may be 2 1/2 the entire day and none taken at night. I don't know. I see my doctor tomorrow and she will "I don't believe it is the medication. OK so what is it and what recommendation do you have. I am really concerned because I am not going to bed until 11 pm and waking every hour or two until about 5 am. I don't want to go to bed at night. I don't want the process to start all over. It's not that I don't want to wake up in the morning. It is that I am worn down from the process. I am now having fears of the nightly and morning episodes. My day gets better and I try to forget it happened. I am getting really messed up here. The neuropathy is kicking my butt with difficulty walking and severe numbness. I am not seeing a neurologist and the neuropathy was diagnosed by pain management by doing the nerve conduction test. Thank you.

I am asking help from you all. I have fibromyalgis, peripheral neuropathy and lymphedema. All diagnosed as idiopathic???. I don't agree and very few tests have been done to prove otherwise. I believe idiopathic is used because it is easier. I feel other things are going on. My question is has anyone with neuropathy found that towards morning light you are awakened by the feeling that your entire body, including face, is engulfed by hot water running through every fiber of your body? I cannot go bed to sleep once this process starts. I almost feel like my breathing is difficult. This along with the numbness in my legs and cramps so bad in my legs and now up the entire leg. I do get up and when the cramps slow down I get in the shower. My anxiety is then over the top. I don't know if these episodes are caused by anxiety or the anxiety is caused by the episodes. This has been going on for almost a year. I have been prescribed Lexapro 5 mg at night to help with anxiety. Well, that's not working. Medication before bed is 5 mg lexapro, 50 mg Elavil (for neuropathy pain) and 600 mg gabapentin. I am now taking 10 mg melatonin for sleep along with 1/2 dropper CBD. Daytime meds 40 mg lasix. 37.5 effexor That is 5 meds prescribed and 2 prescribed by me. I also take (almost forgot) percocet as needed during the day. This may be 2 1/2 the entire day and none taken at night. I don't know. I see my doctor tomorrow and she will "I don't believe it is the medication. OK so what is it and what recommendation do you have. I am really concerned because I am not going to bed until 11 pm and waking every hour or two until about 5 am. I don't want to go to bed at night. I don't want the process to start all over. It's not that I don't want to wake up in the morning. It is that I am worn down from the process. I am now having fears of the nightly and morning episodes. My day gets better and I try to forget it happened. I am getting really messed up here. The neuropathy is kicking my butt with difficulty walking and severe numbness. I am not seeing a neurologist and the neuropathy was diagnosed by pain management by doing the nerve conduction test. Thank you.

I'm so sorry to hear this and relate to most everything you say. First things first...find a Neurologist pronto. Pain Management is not Neurology and it's my opinion that you need better guidance and a more clear path forward. Im rooting for you. Keep us posted and good luck.
Rachel

Sorry, time was limited before with my response. I'd also like to add that you are the first person I've heard speak of full leg cramping and numbness. My legs and arms experience this and it's debilitating. My best relief during these flares is a topical called Topricin Fibro Cream $14. I generously rub it in all over all limbs, shoulder, hands, feet then use a microwavable heat pack and wrap my worse areas first then rotate. Sometimes, I wrap both legs together with heat around calves then with a blanket tightly around both legs. Tightening and losening muscles may help or applying pressure to areas. For instance, when my shoulder and arm flare I literally lean against arm of couch to apply pressure. Rest can be a big help too along with breathing, quiet and calmness to help settle the nerves. The viscous cycle of pain and anxiety is an eye opener. I hear your words and live them regarding dreading bedtime. I bring heat to bed as well. Once I fall asleep I'm usually out but getting asleep is the problem. Many nights I end up sleeping in my recliner due to insomnia and or pain and discomfort in body and head. I take 165mg of Lyrica Controlled Release with dinner. This may help my sleeping in addition to Duloxetine (Cymbalta) in the morning. I take hydrocodone for pain and it is currently dragging with effectiveness. Many daily supplements in between and receive lidocaine infusions which are doing less and less for me, I feel. I have Small Fiber Neuropathy which shares many commonalities with Fibromyalgia. I'm hoping you get better clarification from a Neurologist. Not a bad idea to be tested for Small Fiber Neuropathy via skin punch biopsy as Fibro has been shown to morph into SFN. There may be only so much that can be done but I'm keeping hope alive and you should too. Keep trying and experimenting with the next step. Being debiliated is no fun at any age. Next up for me may be Plasmapherisis and medical marijuana. I hope any of what I've said helped in some way and that today and tonight bring you relief.
Rachel