Hello Sjogren's Friends,
With so much "wrong" in the world, I thought it might be nice to hear something positive. Well, there is a mild negative twist. Isn't that always the way!
I've been taking Gabapentin since December, and I am so pleased with the results. My nerve pain is being managed reasonably well, and so is the constant vibrating in my legs and arms and feet. It felt like I was being electrocuted from the inside. My life has been given back to me.
Funny thing...my doctors didn't "believe" me when I explained about the vibrating, the feeling I was struck by lightning, the horrible sensation of the muscles on the bottom of my feet rubbing together constantly. They all thought I was anxious and recommended therapy. So I stopped looking for a solution, knowing that I would have relief only when I slept.
Then last December I made an appointment to see my Family Physician, desperate for relief. She was unavailable so I saw someone else. This doctor listened carefully to me, and that evening I felt hopeful for the first time. The Gabapentin the doctor prescribed, extinguished my fiery nerves like a wet blanket smothers flames. I still remember the feeling vividly.
So it is possible to stumble on a solution, just when you want to throw in the towel. Don't give up. Don't ever give up.
The other thing that's so amazing - we adopted an eight year old, four legged sweetheart named Josephine in May. She's the best thing ever!
I'm delighted to hear you've got some relief from that horrible sensation, Carebear. Though why this kind of thing is put down to anxiety goodness knows, it sounds exactly like neuropathy to me. I'm also interested because I sometimes get those vibrating feelings myself, but they come and go and are not as extreme as your description, so I'm putting up with them for now.
So what kind of creature is Josephine - clearly not a spider, but four legs doesn't give us much of a clue! :)
So true, araminta! Josephine could be a potbelly pig or even an elephant. But she is just a little dog of mixed breed. The brave girl was found running loose near a highway, and we were the lucky ones chosen to bring her home.
So glad that you got some help. Did you write a letter to the other doctor and let him know that your neuropathy was greatly improved. I have had some of the shaking inside and I always said I felt like my liver was quivering.....and I knew it wasn't stress. You surely were suffering and so glad you found that other doctor. Good luck Irish
I, too, know what a miracle Gabapentin can be, at least for me. I take 3600 mg/day for Small Fiber Neuropathy. I would be immobilized with the pain and the feeling of my skin on fire, without it. I just hope that it doesn't 'stop working'. So far so good.
Several years ago my son suddenly developed horrible nerve pain in his arm (exploratory surgery found a major nerve trapped, and it was freed) and opioids gave him no relief. I suggested Gabapentin and it was the right answer for his pain. Now the problem is gone, with the surgery.
We need to find the right physician, and we need to share what we have found, because this forum has been my salvation.
Regards, Elaine
Carebear,
So happy to hear you are having some relief from constant pain.
Thanks for sharing!
Anna
GREAT NEWS!!!
It was years ago at the beginning of these insane symptoms that I described the vibrating, tingling.. like a tuning fork, hit my funny bone to now DH, who has diabetic neuropathy and had successfully used gabapentin.
That was how I learned about it and the difference was huge. Even the electric shock I would get from foot to brain when walking ceased.
I taper on meds by starting at night and I know some people cannot tolerate Gaba.. so we are fortunate that we are able.
So happy you found relief. Best to you.
Carebear, I'm so glad it working for you and I'm thrilled that you posted good news to share. So often the posts are frustratingly bad news.
I'm very sad that your doctor was dismissive of your description of pain and blamed it on anxiety. Your description sounds very similar to what I felt - that horrible electrical feeling.
It's good to hear some good news Carebear. I am glad it's working for you!