Nothing has helped me for over 30 years now. My doc just prescribed neurontin for the pain. I'm wondering if anyone tried this.
25 Aug 2009
I was on Neurontin for a couple of weeks. It worked great for my pain, but really upset my stomach. I had been on Fentyl patch for 4 yrs, but it wasnt working anymore so I was weaned off it. I had taken Neurontin while on patch but didnt get any results. Once off patch I asked for neurontin and was amazed how well it worked. I know all our bodies are different so maybe it depends on what someone is also taking at same time that it didnt work for some. I am new here and reading your question brought me to tears. There seems to be so many of us out there, why is so hard for docs to help us. Some days I feel it would be better to have cancer(please know I am not asking for cancer or dont sympathize with those who do) at least with cancer people treat you as if they understand your pain. Dont give up and I have you in my prayers.
29 Aug 2009
thanks to those of you that responded to my question... i havent tried it yet, its just sitting here... i was at the vitamin store today, and the employee suggested taking multi enzymes. so i bought that and a green fiber powder... i hope something helps... has anyone slept on a tempurpidic bed ?
30 Aug 2009
I'm very sorry to hear that you suffer from this elusive and painful disease. I've had it for about 18 years, and it's been rough. I haven't tried neurontin yet, but I know some people who have and they think it's fantastic! I'm definitely going to give it a try soon. I'll be thinking of you and hoping that the neurontin makes a big difference for you,and that you'll be feeling much better very soon. Take care, keemo7
31 Aug 2009
I don't take gabapenton (neurontin) but do take its cousin Lyrica. It has been an absolute god send!!! I just turned 50 and have had fibro for close to 30 yrs. It took a couple of weeks but then started to kick in... patience was the key and not one of my strong points!
My partner takes neurontin for nerve pain. I did try it once when I ran out of Lyrica (bad bad me!!) but its side effects were terrible. Even on an extremely low dose I felt like I had been on a 2 week drinking jag... or so they say. Plus I can get help from the manufacturer for my drug which is life saving!! (literally)
2 Sep 2009
Yes, I've been taking it for 5 years now. I can not get out of bed without it. I take 600mg in the morning and 1200mg at night around 8pm. When I first started taking it I was extremely dizzy but I soon got over it. One thing I do is drink at least 60 ounces of water a day to try to keep a clear mind. I have noticed since I have had fibro I've gone through a period of time grieving for the person I used to be(very active) and who I am know(a lot less active) but I know how much I can push myself so that I will not slip back into the chronic fatigue part of fibro(staying in bed all day). I do push myself everyday just to walk around or get out of the house and I feel so much better after words. It's slow going at first but after a cup of coffee or two I can get more things done. There is hope at the end of the tunnel. I have tried every medication available out there for fibro, but I have an extreme sensitivety to everything.
Neurontin is the only medication that I have continued with from the beginnning of my diagnosis. I also take 1 mg of Klonopin at night and If I really am in pain I also take 1 tab of Darvacet. Because I have a lot of medication sensitivities I have also been giving a TENS Unit that really helps, I did have to go to physical therapy to get it though.
I hope this helps. By the way I did go to the Fibromyalgia and Chronic Fatigue Center a few times and they said the only medication that they would prescribe was Neurontin because they felt it is the safest med out there.
14 Sep 2009
Browsing answers, I see you're not getting much positive feedback on Neurontin for fibro. So I thought I'd mention that a friend of mine is taking Lyrica (its like a cousin to Neurontin) for Fibro and thinks its the greatest. I take Lyrica now for PHN, and don't get the negative side effects I got on Neurontin.. I was like I was completely stoned on it.. and this friend who's now on Lyrica said she "lost 2 years of her life on Neurontin".. it worked but she was "blitzed" for the duration. If it was me, I don't think I'd care if I was in a happy haze if it helped the pain and symptoms of fibromyalgia!! However, Lyrica lets me (and her) be clear-headed with our respective ailments. You might like to check Lyrica out and ask your doctor, esp if you're finding any negative side effects to Neurontin. Good luck!
14 Sep 2009
I'm on Neurontin for Fibro. I've been on it for 3 months now. It has helped me somewhat. I to feel about 80 and I'm 40. They told me to give it another 3 months and if it still is not working how they would like they will switch it. They said Fibro is a very hard illness to regulate the pain. Lots of MED switching. I wish you good luck and i hope you find the right one.
17 Sep 2009
Hello, I am a recently diagnosed Fibromyalgia sufferer, like so many of you. Apparently the rotator cuff surgery I underwent may have brought this condition on. My doctor has me on Savella, a drug specifically for this condition. It is one of only 3 FDA approved meds for Fibro. I also take neurontin--- strangely it actually keeps me awake. The Savella DOES present with side effects, I have experienced. The extreme nausea, even when I eat before taking it. I will happily pass on this tip, to those who also have Savella or are new to it --- do NOT let yourself run out of it! The 2-week titration pack very gradually gets you up to 100 mg day... just like if you were going to wean yourself, that too would likely be the same gradual amount over time. I let myself run out before the weekend, by accident, when I forgot to call the Dr for a rx since sample ran out. Let me tell you... if you think you are in pain now...
wow! It sort of felt like it was being (pain x 5!) dumped onto the top of my head, and it steadily went thru to my feet..as the hours wore on the pain and the agitation and the 'craziness' of the worsening pain had me pacing the floors like an animal. I got a good idea of what it must be like to 'kick' heroin... the Savella has warning in its literature that it is and does absolutely become a dependency drug, due to the nature of how it works... so please be forewarned. I wouldn't have wished that episode on even my worst enemy. I hope I have helped. Good luck to the rest who are afflicted. I am 45 and now I am so physically opposite of the outdoorsy hiker/skydiver/physically active person I was just a couple of years ago. I don't even want to leave home to go do simple errands. I hope I can get a grip on this thing and learn how to cope better.
25 Sep 2009
I've been on Neurontin for a month now. Part of week 2 was great, I could actually function & the pain was ok. After those 5 days of feeling good, it's gone downhill. badly. All I am getting now are side effects- pain & fatigue back with a vengance, weight gain, dizziness, blurred vision, dry mouth constantly, feeling stoned, nightmares. I see my doc tomorrow and I am pushing to get off this ASAP as I have heard coming off it can be heIl!
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