Fibromyalgia Support Group

You're not alone in your pain. Fibromyalgia is a condition that can be difficult to diagnose and manage. If you're trying to cope with pain throughout your body, sleep problems, general fatigue, or other common fibromyalgia symptoms, you're in the right place. The community is here for you to talk about therapies and share your challenges.

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tangerinebear 02/24/2011

Hello, I am a survivor of fibromyalgia, I had this crap for over 20 years and was on every drug known to man and was still sick. I am on low-dose naltrexone now ( it is compounded) and I am never sick with this ever...
I have been on this drug for 3 years and DO NOT FLARE. low-dose naltrexone helps Multiple sclerosis and any autoimmune disease so I am taking it because my friend with MS told me to try it...What did I have to loose...Takeing drugs like ultram, imitrex, flexeril, and now I am NORMAL.
very seldom if ever do I get a fibro moment......I joined this group not for support but to give to others a chance to live a normal life as I am doing now. I have fibromyalgia, BUT IT DOES NOT HAVE ME! I take care of my special needs daughter who has many health problems and am a caretaker for her ......... Without low-dose naltrexone my life would be just plain awful
if you have any questions feel free to email me at elisa_luna2004@yahoo.com, God bless you all, Michele L.

deleted_user 02/26/2011

I spoke to my dr. about this too and am considering trying it. Thanks for sharing the information.

jennyph 03/02/2011

I have been taking this for almost a year. It doesn't take all the pain away, but is does make my days a little easier. I haven't had the flu, a cold and my allergies are almost nonexistent.

Narey 03/02/2011

I was on it for four months and found it has helped tremendously. Again, it didn't take it all away, but I was able to do so much and the "paybacks" were minimal and short~lived.

however, a different doc in the practice has refused to renew the script and the original prescribing doc won't 'overrule' her. I am so frustrated. My pain and my mood have plummeted and I am in this quandary until I can get a new one.

msvee, if your doc will prescribe, go for it, there are no drawbacks to that med!

deleted_user 03/03/2011

Hi Narey, I was thinking of asking for this also and I have bad reactions to every med out there:( did the doctor say why they would not renew, was it a safety issue? thank you for your input..I have run out of things to try and really want to have a life again:)

Narey 03/03/2011

Hi, the doctor ONLY looked at Pubmed which only lists a few clinical trials, because it's an old drug, used for over 20 years. She called it experimental when it is actually just off label use of an older, established, safe drug. The normal dosage is 50 mg and this 4.5 mg is almost homeopathic level! Using just a tiny bit to fool your body into making it's own endorphins at a greater rate.

I'm tellin you. When I took it I sure felt better, and when I stopped, I got worse. I took it night before last to have a good day, and I DID! This morning, back to feeling less well, because I didn't take it last night (I have only a few left and I'm saving them for when I need them when my baby granddaughter is born)

If you can get the doc to prescribe it, I'd really encourage at least trying it!

deleted_user 03/04/2011

I have MS and Fibro and have taken LDN (3.0) for 8 months. I feel much better. More energy and clearer head. Some of my MS symptoms are totally gone. The best part is NO SIDE EFFECTS!!
Just a little pill to help my immune system help itself.

deleted_user 03/04/2011

Thanks Narey, I see my doctor next week and I will be discussing this. Thank you again, I would give just about anything to get back to life:) Have a wonderful day today and always::))

deleted_user 03/09/2011

It is always great to hear success stories. It gives me hope that we may be able to find something to help my hubby.

God bless you, Michele.

JerryJsMom 03/09/2011

The more I read, the more positive results I hear about LDN. I've recently moved and have an appointment with a new Rheumy. Has anyone else besides Narey had trouble getting this prescribed for FMS? Is insurance covering it? If not, approx how much does it cost per month?
Thanks everyone
Adrianne

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