feeling defeated

I live in a state where they are thinking about letting people grow their own but I doubt they will do it. I told my brother when he first talked about it that it would be good for him to try. Some people including some doctors think it is wrong but it is not. Whatever works for you is good. My thinking is now that pills are not always the answer. They are for some people and I would never say don't take them. When I worked as a nurse we used to give marinol to patients. People need to get their head straight. There are so many pills with side effects it is crazy. When I use to see patients in their homes I would sometimes have meds for them from compounding pharmacies. Maybe going back to the old ways is better. I have small nerve fiber and I woke up one day and I had it. I had pin pricks all over. I am taking a statin drug and I asked the neuro Dr. if that could be the cause and he said no. I stopped taking it on my own and the pricks stopped. My regular Doctor told me I need to take it. I do have some plaque in my arteries so I started it back and the pricks are back. I am anemic and have a low immunoglobulin but my other doctor isn't worried about the low m. He did blood work to see if anything has changed. So far I don't know what the cause is and there may be no known cause. I have a burning pain that is in my right hand and it comes and goes all day long. They asked me if I needed pain med and I said no. The pains are annoying. I also have them in my eyes and those are related neuro wise. I have been lucky so far. My brothers issues and others are far worse than mine. My heart rate went up to 184 so I am taking a beta blocker. When I see the cardiologist I am going to ask her what the cause could be. I am just frustrated because there may not be a cause.

@Nortonburn, I have had CIDP for 15 years now and often feel defeated. Have you been specifically diagnosed with a type of neuropathy? As for the Botox I’ve had Botox in my head for headaches, and though it didn’t work, it didn’t hurt me. I agree with the mentor below to have a test first. Good luck to you and please hang in there. Many days in the last 2 yrs I feel like I’m living today just to get to tomorrow because I have a son in college. Please do everything you can before you reach that place! Wishing you well.
I currently take Klonopin, Which works for maybe two hours and it’s another drug that becomes tolerant in your system. Hydrocodone was the 1 single winner for me when Nerve/muscle spasms happened and also was the number one winner for me when I would get nerve pain such as sciatica. I never had to go up in dose, & never became tolerant, However I was on another narcotic for a different kind of pain at the same time. When I went to a pain clinic they cut off hydrocodone completely and immediately and I suffered no withdrawals but I also suffered a whole Lotta nerve pain that has been taken care of by that medicine. I had made the connection because I had had oral surgery! And was given hydrocodone for the pain. I noticed my legs and sciatica resolved at the same time. I talk to my neurologist he prescribed it for my legs and nerve pain and it’s been a wonder. However now with the narcotic movement and being with a pain clinic that’s gone so I especially feel for you with your legs and feet pain. I am one of those people that has happily tried absolutely everything any doctor has ever recommended but none have worked. I also suffer from chronic severe migraines and Sjogren’s syndtome so there’s never an answer for everything. The pain relief pendulum has swung Much much too far away from pain relief and more and more people are experiencing more pain than ever. Good luck!

I have your symptoms. My whole body pins needles-faciculations-burning-cramping-paresthesia. No answers-many tests and guess what? I am on a statin and have a low IGM of 35. I feel your pain - literally.❤️

Do you take one tablet twice a day or two tablets at once?

Medical Marijuana is best to try and do your research to figure out what works best for you. All those pills can't make you feel so great.

To user 934576,
One might be able to do either, but I take one with my breakfast and one with my supper. I don't recall back when I first started taking them if they worked the first night or if I had to take them a short while before feeling the results as is often the case with many supplements. Anyway, they've worked for me for many years, and if I think I no longer need them, I soon receive a rude and painful reminder!
Best wishes.

I have working the pain caused by my demyelinating peripheral neuropathy for years. I am in pretty good shape now, pain wise. Combination of: Gabapentin 4000mg four times per day. Yes I get up between 2 and 3 AM to take one, but the dogs have fallen into that routine. Amitripyline, 25mg prior ro bed. One each night if I have exercised that day (swimming). Otherwise two tabs. Neurologist prescribed 1 to 2 tabs for pain and sleeping. IVIG once per month for two consecutive days -for pain and slow the disease down. Neurostimulator, primarily for spine pain (all L's fused and 5 C's), but it allowed me to decrease pain medication. Yes, I was taking more, but neurostimulator cut my gabapentin from 3200gm per day to the 1600mg. I had the cattle prod to the feet at night, but the neurostimulator seems to make that a thing of the past. Lot of other good advice on this blog - just try them out to tailor to your needs. I tried Gralise, a time release version of gabapentin, but it did not work. Tried Lyrica - terrible side effects. I can live with the combination I have now and even have some growth potential with the gabapentin.

Amieb I also have Sjogrens. Have you been on the site Smart Patients”? It’s a wonderful forum for people with this auto-immune disorder. Hope you give it a try.

Thanks for reaching out, I certainly will. In my above msg, I meant I no longer have Hydrocodone for nerve,muscle pain. @jetsetter Do you have only Sjogrens or others too?

@ericd47 Hello, is the neurostimulater an implanted device in your spine? I’ve been looking at Something new like that. After so many years, and now the rush off pain meds, the mental part is getting pretty tough to deal with. I will and have tried every device, med, procedure… to no avail. Thanks for the post!