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Posts (44)

Thu, Aug 6 1:08pm · anyone feel more burning/numbness when sitting in Neuropathy

@brayimee Sounds like things aren't going well for you and I'm sad to hear about your frustration. In my case I was diagnosed with small fiber peripheral neuropathy after my neurologist performed a biopsy. My uncle, sister and brother were all diagnosed with the same thing. The neurologist started me on 100mg of Gabapentin three times and day and after a few months got to 900mg three times a day. It didn't work for me, but it works great for my brother. He started at 100mg and his neurologist has increased it a few times. So your neurologist is the one to increase it. You might want to call and let his nurse know the pain gets to a level 7 (out of 10) or higher and ask what you should do about it. They might raise it over the phone or have you come in sooner. I found that if I tell them what's wrong and ask what I should do, they were more likely to increase my medications as apposed to me saying I think we should increase the medications. Also, don't give up hope. There are other prescriptions that they can prescribe for peripheral neuropathy. They doctor can also prescribe pain medication. My neurologist sent me to a pain management doctor. I no longer see a neurologist. They said there is nothing they can do for me.

Most of my doctors don't like hearing about what I find out on the internet, so I don't tell them directly that is where I heard about something. Last couple of times I just asked them if such-in-such would help and they prescribed it to me, but it didn't help. The only thing that has helped me is a peripheral nerve stimulator installed in both legs and pain medications.

Mon, Jul 27 4:07pm · anyone feel more burning/numbness when sitting in Neuropathy

My feet burn more when I sit or lay down. I put them in cool water to ease the pain. I also take prescription pain pills.

Thu, Jul 23 9:47pm · Living with Neuropathy - Welcome to the group in Neuropathy

Sounds like you have had chronic pain for years. I've only had it for 5 years and I think that is way too long. I have SFN in my feet and hands,, but mostly in my feet. They confirmed it via a biopsy. I still remember the doctor telling me that it would only get worse and there is no cure for it. I appreciated him being direct even if the outlook wasn't good.

When my feet start really "burning" I cool my feet off with cold water for 2 hours til the pain medication kicks in.

I'm 60 so it looks like I'm one of the younger ones with this painful diagnoses.

Thu, Jul 23 9:37pm · Update on my DRG stimulator Implant. Implanted 12 days ago. in Neuropathy

@jesfactsmon Thanks for the interest Hank. The stimulator definitely allows me to walk around with much reduced pain. The stimulator helps with the burning but not a lot. I still have to take Methadone for the burning feet but only about half of what I was taking. Eating sweets still makes my feet burn, so I have to watch out for carbs. Which is strange. Sweets/carbs do not spike my sugar. I think it goes up to 120 or 140 right after I eat and then goes back down. Maybe it is the Triglycerides that make my feet burn.

The doctor told me that the most pain relieve I should expect is 70%, so they knew it wouldn't block all of the pain and I would still need pain medication.

I can increase or decrease the intensity myself. They also supplied me with two different programs. So, I have been adjusting the intensity and tomorrow I'm going to try the other program they installed.

Wed, Jul 22 11:53pm · Update on my DRG stimulator Implant. Implanted 12 days ago. in Neuropathy

@lorirenee1 That is good news. I don't know anything about the DRG stimulator you had installed. I don't much about my nerve stimulator. I'm glad there is some light at the end of the tunnel.

Fri, Jul 17 1:41pm · Peripheral nerve stimulators in Neuropathy

@jesfactsmon They turned the devices on Monday and now I'm able to walk around for 30 minutes or more at a time. (Before the Nalu devices were in stalled in my lower legs I could only stand or walk for a couple of minutes. The pain would get so bad I would have to stop or knell on one knee.) I've been using the devices 24 hours a day, but I guess I really only need them for standing and walking. However, they also seem to help with the burning feelings in my feet. I still take some Methadone pain pills for the burning; about half what I was taking. I might be able to reduce that over time. For me the Nalu devices have been extremely successful. I'm not sure if it is better to have them installed in my lower legs or have it installed in my back. Both places have pros and cons. I don't know of anyone else who has had a nerve stimulator installed in their lower legs.

Sat, Jul 11 7:28pm · Peripheral nerve stimulators in Neuropathy

The xray…

Sat, Jul 11 7:24pm · Peripheral nerve stimulators in Neuropathy

Thanks. I didn't even think about that until you mentioned it.