Nothing has helped me for over 30 years now. My doc just prescribed neurontin for the pain. I'm wondering if anyone tried this.
2 Jul 2011
took Neurontin 100mg. for 6 days it was awful the side effects were so bad I didnt even fell like I was in my body like i was a total zombie. and it made me real depressed I forgot things at work. i just felt so bad all the time I was on it. but it did help the pain I couldnt believe it, I just couldnt take it so I stopped it, now my doctor is wanting me to try cymbalta , so I dont know I have been just dealing with the pain until now and was taking nsaids but they seem to want me to stop taking those.
23 Oct 2010
Yes I also have Fibromyalgia and have found Lyricia to be terrific. When it was first given to me I developed edema and had to stop. After a few weeks I was put on a lower dose and no water retention. As time went by the dose was put higher and I am doing great in that dept. Hope this might help you with your question. Wishing you pain free and peaceful life. Joanne
ps: Yes I had tried Neurontin. I do know several people on it and it seems to take a while to build up in your system, so I a told by them.
18 Nov 2010
iItried neurontin but it did not help at all and had terrible side effects. I then switched to lyrica and that helped a little with much less side effects. It does cause drowsiness though so I mainly take it at night. It might work better if I took it during the day also but I don't want to be drowsy.
22 Jan 2010
I was diagnosed with Fibro about 6 months ago and shortly after that an MRI showed that I have Chiari malformation. A visit this week to a neurosurgeon at Cleveland Clinic brought an explanation that I'm trying to share with Fibro sufferers: Chiari's symptoms often mimic the symptoms of Fibro but since Chiari is a brain issue (basically the brain exceeds the skull's capacity and is squeezed down into the spinal column) no pain meds will work for it. There is a decompression surgery which I am scheduled to have this May. The surgery I'm having is the Endoscopic Chiari Decompression which is less invasive and therefore heals more quickly and leaves a much smaller scar.
The fact that you've had pain for 30+ years with no relief makes me think you might at least want to get an MRI of your brain just to check because knowing for sure will help make sure the treatment you receive is the best possible for your condition.
Oh and an MRI is the only test that reveals Chiari.
23 Nov 2011
My 23 year old son was diagnosed with fibro about five years ago. He has been on neurontin almost that long and is up to the max dosage of 3600 mg a day. I am not sure it is helping anymore. His short term memory is VERY bad. I would like to ease him off of it to see if he can go without it. He takes prozac, diladid, uses a pain patch and still has bad pain.
How slowly should I wean him off neurontin? Oh, and he tried Lyrica too. No help at all and caused big time weight gain.
27 Apr 2011
I have never tried neurontin but I was on lyrica for over 3 years and cymbalta for over a year and did not find either of them to be helpful. I know that it is difficult to work out when you are hurting and I definitely don't exercise as much as I should but the most pain relief I have ever experienced (since being diagnosed 5 years ago) was when I was swimming and/or doing yoga regularly. I know that it may not be so good for you but tanning beds really help also but a hot bath is probably a safer choice.
The only thing lyrica helped with was the "fibro-fog" confusion but it had many difficult side effects (fatigue, weight gain, sleep disturbances ... effects REM sleep severely). Please feel free to shoot me a message if you ever have a question, had a bad day & want some empathy or need anything else at all : ) fibromyalgia is tough... I have had it for 5 years & I am only 25. Best of luck & let me know how the medication works for you.
30 Oct 2009
Hi, I have had Fibromyalgia for 8 years now, started on Ultram, Flexeril, Xanax, physical therapy. Worked for about a year. I was at wits end and went to the dr. Last week. I was crying, I just couldnt take the pain anymore. My meds were no longer working. He put me on 300mg of Neurontin. I have slept so good all week. Body is not as achey, anxiety is better, depression seems better, and I have energy! They do make you tired at first, but its so nice to have a good nights sleep! So now I am on that, taking my Ultram twice a day, and I just feel better than I have in 7 years. You have to remember with Fibromyalgia you have to learn your boundaries. If you do to much you hurt, to little you hurt. So you have to learn your body! Take meds at night that are going to make you sleepy, oh, Neurontin also helps with restless leg syndrome. 300mg is a very low dose, but I would start at that 3 times a day, you can always ask your dr. If you need more or if you should take less.
A study done recently shows that they started on 1200mg a day... So I dont know! Im thinking of upping my dose a little, my dr said it was ok. So tonight starting on 400 mg b4 bed, 200mg during the day..So 200 am... 200 afternoon..400mg at night. But please ask your dr b4 you do this! I am a professional, but am not a dr! Hope this helped you!
30 Oct 2009
Hi I posted a response. What you have to also remember is fibromyalgia does affect your nerve endings. They get inflamed and that is when you hurt the most, and are tender to the touch, when you feel like you have pins and needles under your skin. Thats the nerve swelling..Neurontin was first perscribed for people for epilepsy. They have learned through study that it does help very much with keeping the nerves under control and I honestly haven't hurt near as bad since I started neurontin. This is just my advice! Different people react differently to meds! Good luck hope this helps! Also bathing in a warm bath with epsom saly helps too. Massages also help.
4 Jun 2010
I have not tried neurontin but if it does not help and you have never tried Topamax (Topiramate) 25mg. to start. It is a miracle drug for me! It made me really sleepy so I had to start with 1/2 a tab at night then go to 1/2 at night and in the morning. I'm now up to 3 tabs am and pm. That is still a very low dose. It even helps with the fibro fog!!! I still need to take Norco and Valium when I go out somewhere but the plan is to get the dose high enough that I won't need them any more.
I took Neurontin years ago in a study for use in migraine's but all I did was sleep and I was on the lowest dose so I had to stop it. I hope the Neurontin helps you but if it doesn't talk to your doc about Topimax. Good luck to you!!
28 Jan 2010
I am doing fairly well on Neurontin (actually, Gabupentin). I don't know you're situation, but one reason I think I am doing well is that I can take enough of it to sleep for several hours, which I can do because I don't work. If I take a large enough dosage I sleep rather well, which in turn helps the body heal, etc. I am actually taking it, in part, for better sleep along with for the fibro pain.
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