Neurontin for fibromyalgia?

[Debby]

Just wondering how many of you take it, at what levels, and if it works? So far I'm up to 1,200 mg. a day and it feels like I'm taking placebos. I'm wondering if it's worth continuing to up the dose? Percocet is the only thing that relieves my pain. I know many of you have had different experiences....just would like to hear your opinions.

[bubblebabe]

Neurontin did nothing for me so my doc switched me to Topomax but I'm not sure if that's helping although it has stopped my jerking by about %75.
Opiates are the only thing that actually manages my pain.

[Debby]

Thanks for that Bubble....many people here swear opiates do nothing for their pain, and I've always felt guilty about taking them, but they just work for me. I guess we all have our thing that works! Hang in there!

[Kimba22]

Hi Debby,

This drug can be very helpful for nerve pain, but doesn't work for everybody. Personally, I take double your dose. But for me, I've only found it helps w/ certain sensations (hasn't done much for my pain). I've been on opiates and needed a pretty high dose to even touch my pain. I guess there's no way to know what dose might work unless you try increasing it.

I hope you are successful at easing your pain!

[Fed Up]

I use Neurontin 14 years ago for what was suppose to be Fibromyalgia; twice the dose you are one. It did not help, at all.

Neurontin was originally made for ..I can't remember which disease it was, now. But, there was a great deal of money used to develop it.

When it FAILED catastrophically and actual caused some serious injury and made some people worse, it was then 'marketed' as a 'cure all' so to speak for pain and particularly nerve pain.

Years after I stopped using it, lawsuits came to light and other tragic things. That is a drug, unless it was entirely effective, I am not sure I would use.

But then, if it works and you feel better without the tragic side-effects, why not, I guess.

It has been over 12 years since I've visited any information on this. But it was given to so many people for --even bi-polar, for pete sake. fed


**URL 2removed because it was a solicitation**
**the OP was not soliciting for thier own gain and was only passing along information**

[Debby]

Hi Kimba....would you mind terribly telling me how high your dose of opiates is? If you're not comfortable with that I understand.

I'm currently in a dispute with my husband over this. I'm rxed (4) 7.5/325 mg tablets of Percocet a day, and my optimum dose seems to be (6) a day, but my husband feels I'm taking too much already, and I'm afraid if I push it with my doctor, he'll cut me off completely.

I don't know what normal is for fibromyalgia pain, or if there is a normal. I do know going into winter, and the cold and rain, makes me hurt even more. Not sure where to go with this.

[knuckle]

Have you researched LDN for Fibromyalgia?

Low-dose naltrexone for the treatment of fibromyalgia: findings of a small, randomized, double-blind, placebo-controlled, counterbalanced, crossover trial assessing daily pain levels.

http://www.ncbi.nlm.nih.gov/pubmed/23359310

CONCLUSION:

The preliminary evidence continues to show that low-dose naltrexone has a specific and clinically beneficial impact on fibromyalgia pain. The medication is widely available, inexpensive, safe, and well-tolerated. Parallel-group randomized controlled trials are needed to fully determine the efficacy of the medication.

Also, I'd suggest you google these terms:

fibromyalgia curcumin
fibromyalgia malic acid

Both supplements show efficacy in reducing fibromyalgia pain.

[Kimba22]

Debby,

I've never been on Percocet. Morphine helped me the most; but you can develop a tolerance to that one fast, and then you quickly need higher doses to get the same relief. I don't want to go there.

I've been on Oxycontin, Dilaudid ... my doctor added it to the baclofen in my intrathecal pump (couldn't do that one, made me too sick & weak), and Fentynal (a 72 hr. patch). My Pain Specialist had me up to a 150 mg patch, they start at 25 mg. He wanted to up that dose, but I hated the side effects. (So, I never went higher).

I'm currently off pain meds (except for an occasional hydrocodone when I just can't stand it). I didn't like how they made me feel. I already have enough issues with my cognition skills and constipation. But, sometimes there's no other alternative.

Do you have access to a Pain Management doctor? You'd have much better luck being prescribed pain meds that way. Other doctors are very reluctant to prescribe these meds. No one wants to be investigated or arrested for prescribing opiates. I did go to a pain management dr. years ago who went through an investigation, during which time he closed his practice. (I was glad I'd found another dr. by that time.)

My DH has never understood my pain, so I can empathize with you. He's never had to deal with pain himself, so he just can't relate.

I hope you can find an empathetic dr. who specializes in the treatment of pain. Although my DH never approved, at least he was more comfortable that a Specialist was handling my meds.

Good luck to you. It's miserable to be in pain.

[Debby]

Thank you for all the replies. Kimba, I was seeing a pain management doc, but he had a more holistic view of medicine, and wanted my PCP to rx the pain meds. That wasn't working because she wasn't willing to rx based on his recommendations. It was a nightmare with me stuck in the middle.

Now I have a new doctor, and had to sign a form for chronic pain management - a first. He has mentioned several times a fear of lawsuits, etc.....and he had a patient OD and die, so he is ultra careful. It makes my blood pressure go sky high when I see him. I like him, but I see him moving me in a direction I'm not going to be happy with, and I don't know what to do.

And yes, my husband does not understand what I go through. He cares, but if only he could walk a day in my shoes. I stopped complaining a long time ago about my pain, and I think he sometimes forgets about it because I'm not talking about it.

I have found a chiropractor who has a wonderful massage therapist, and as long as I see him too, I can get an amazing 1-hour massage for a $20 co-pay. It has helped a lot, but it is short-lived, and I can't afford that co-pay more than once or twice a month.

Anyway, I just keep keeping on, like we all do. Things are evolving all the time, and I just try to keep up!

[Kimba22]

Good luck with your new doctor. I hope he helps you.

Massages are very short-lived for me, as well. It was just too expensive for momentary relief. But that is nice you found a way you can get them once in a while.

Have you ever considered acupuncture? Never helped me, but some people have great success with that.

Of course, there's always medical marijuana. But I doubt your husband would condone that, either, even if it is legal where you are. (I have never gone there.)

Best wishes,

[Debby]

Yeah, medical marijuana would send my husband through the roof (maybe not such a bad idea! LOL!), and I'm not sure "I" could go there.

Has anyone had a positive experience with acupuncture and pain relief? I hate needles, but am willing to do it if there's a shot at it helping!