Fibromyalgia and CFS sufferers

[Pharaoh]

Has anyone tried Fibronol?
It looks fairly hopeful, and fairly expensive, but if it helped the fatigue it would be a godsend.

http://www.fibronol.com/fibronol.html

http://www.sleepydust.net/fibronol-review.html

[mopinko]

1. expensive snake oil. if we ever get national health care

these snake oil products will disappear. people who cannot get real healthcare is the biggest chunk of the market for this kind of bs. the meds that i take, which have helped me greatly, are a fraction of the cost of this shit. but you need to see a doctor to get them.
look at it this way- why don't these people do the kind of rigorous testing the real drug makers do? if they had real proof, wouldn't their market share explode? yes it would. so wouldn't it be worth it to them to prove that their products work? yes is would. so why don't they? because they don't work, that's why.

[Warpy]

2. The only thing that did what this placebo claims to do

was an antiseizure medication investigated a couple of years ago. It did all of that but had so many side effects at the effective dosage they couldn't get labeling for it.

Eighty bucks a month seems a bit steep for a placebo, too.

[Pharaoh]

3. Well my fatigue after 15 years

is reaching new levels, perhaps it is due to my spiritual sensitivity and the earth plane is about to hit the shit fan,

But otherwise, what works for you guys?

I'm taking any and all suggestions

[mopinko]

4. are you taking anything now?

i am taking a muscle relaxant and gabapentin, which was developed as an epilepsy drug, but works pretty well for myofacial and neuropathic pain. i believe topamax is a similar drug, which some people take. other things that people take are old line antidepressants like elevil and trazadone.
these are all old, generic drugs that should not cost more than about $25 a month. they made a world of difference to me. especially, they got me to the point where i could tolerate exercising, doing yoga and riding my bike.
i still sleep a lot. i still get tired. i still have fuzzy headed days. but i feel so much better, and the pain has subsided greatly. i am able to do the things that really matter to me.
the meds were the start of a virtuous cycle.

[Pharaoh]

5. Well it's complicated

But I have been going through alot of stress trying to get and early disability retirement from the post office. With almost 28 years in service you'd think they'd cut me some slack but this is dragging on and on,,,,,,,,,,,STRESS!

I came down with Fibro/chronic fatigue (and it really is the fatigue which is the worst for me) I get the fibro pain too but not as bad as it was at first. The Elavil(amitryptilin) was a wonderful drug for most of the last 14 years, but the last few years has been causing kidney/bladder issues,............frequent urination and if not careful the inability to pee at all..........having a catheter shoved up my penis is something I really want to avoid. I've tried trazadone which seemed helpful , but after about 10-12 days I get really nauseas all the time.

So I've been doing supplements and ginseng for the last 3 months,...............super fatigue now

I just went back to the trazadone yesterday in hopes of some temporary relief.
So anyone with any ideas on a good drug for fatigue?

BTW I think the postal stress is causing alot of this but it's totally out of my control............

[mopinko]

6. i like the neurontin

aka gabapentin. hard to tease out which drugs do what for me. muscle relaxants alone helped the pain, but not the fatigue. i take this stuff at bed time, so i sleep better, and that helps. the old line muscle relaxants cause some drowsiness, which is a good thing at night. i used to really cramp up in my sleep.
trazadone made me nauseous as well, and a little jumpy too. some people use topamax.
i feel decent now. still pretty fatigued, but able to function. i sleep 10-12 hours more often than not. but i am pretty alive when i am awake. i do still find myself wondering if i can squeeze in a nap too often. trying to figure out how to just shut that up.
i hear you on that stress part. family troubles definitely sped up the downward cycle i was on for a long time. fortunately, those have turned around, and are part of the upward cycle i am on now.
keep trying till you figure it out, tho. you just gotta.

[Pharaoh]

7. One doc put me on neurontin

for about 6 weeks and it did'nt seem to do much, but that time as I recall it was more of a depression issue,

maybe I'll try again.

[hyphenate]

8. The fatigue is what's killing me right now

too. The Tylenol with codeine helps the pain, the amitriptyline (Elavil) and cyclobenzaprine (Flexeril) help with the insomnia, but there is nothing to help the endless fatigue. People around me don't understand how tired I am. I'm grateful when I can sleep throughout a night, but I then crawl back into bed after a couple of hours up and keep doing it all day long.

As far as disability is concerned, try hiring Binder and Binder. They're nationwide, and they specialize in getting disability for people who are turned down their first time. I doubt if I would have gotten mine except for them, because I also have depression, and couldn't even get the energy to follow-up on paperwork.

If anyone has a solution for the fatigue, please let us know! I am getting further into depression with no options because there doesn't seem to be much to hang around for. Not that I'm suicidal--yet. But if things continue like they are now, it's not that far into the future.

[WestHoustonDem]

9. Have you considered trying anti-depressants? I found

that Prozac helped me tremendously - to the point where eventually I didn't need the Elavil and Flexeril any more. I still need more sleep than most people, but I'm functional

[hyphenate]

10. I've been on an anti-depressant

for three years now. Prozac didn't put a dint in the depression, though. I'm now taking Effexor XR, which helps, but it's at a point now where I don't even think that's working, either. But the withdrawal symptoms for the Effexor are horrendous--if I fail to take one every day like I'm supposed to, the results are terrible. Everything from palpitations, dizziness, nausea, and far worse. I feel like an addict at times, because I can't stand the side effects, which means I can't go cold turkey off it like I would want to.

I once told my doctor that people think I'm a hypochondriac, and he said that if I have all the illnesses and chronic conditions (which I have), I can't be a hypochondriac! But sometimes I just don't even bother to mention to people how tired or in pain I am at any given point for that reason. It just sounds like I'm bitching and moaning. It's one of the reasons I don't go out much or do much of anything, as I'm usually too tired to do it.

People generally DO NOT understand how it feels. They figure you're just complaining about something every day. I wish they could be in my skin for even a day and see what they feel like!

[flamingyouth]

11. My fiance has the exact same reaction with Effexor XR

If he misses a dose, he gets SO sick, it's awful, even if he's just a few hours late in taking it. But it does help his anxiety, at least.

God, I could have written your second paragraph. That is exactly how I feel so much of the time. I know people think I'm a hypochondriac too, and I'm always self-conscious when I travel and people see how many meds I take.

I'm going through a low point right now. Lately I've been in horrible pain but I've been trying to keep it a little quiet because I feel like all I do is complain. :(

Anyway, I really understand what you're talking about here. :pals:

[Warpy]

12. You can withdraw from Effexor, but it has to be done very gradually

It took me about 6 months, all told. The last step was the longest and hardest, a quarter of a tab every other day for over a month before I was able to quit entirely. I was still borderline wacko for a while, incredibly irritable.

I had to get off the stuff because it was causing severe tachycardia, heart rate to 180 when a back spasm would start. Now my heart still races (typical reaction to severe pain), but tops out at about 155, uncomfortable but not dangerous. 180 was dangerous.

[hyphenate]

13. My heart rate used to be way high

But then, I had atherosclerosis and two heart attacks.

But long before then, the doctor put me on propranolol (aka Inderal) for the tachycardia. It brought my rate down from over 100, to about 70-80 depending on how much activity I do. It's a beta-blocker and reduces high blood pressure as well.

[Warpy]

14. Mine only went up with the back spasms

and I'd have to sit down FAST. I always managed to, never blacked out anywhere, and the heart rate dropped when I stretched the spasm out. It's not a cardiovascular problem, it's pain combined with a bad reaction to Effexor.

Fibro sucks. It really does.

[Pharaoh]

15. Good news all!

I got my disability retirement!!!!!


WOO-HOO!!!!!!!!!!!:party:

What a relief .............

Of course the struggle continues, I am trying naturopathic to help with the fact that the elavil and trazodone really fucked up my urinary tract.............

but at least I did'nt have to drive 50 miles rountrip to work to deliver a bunch of junk mail that nobody wants!:toast:

[WestHoustonDem]

16. Congrats pharoah! What a relief for you!

:toast:

[Ayesha]

17. Medical Marijuana = Better Night of Sleep For My Partner

My partner has Fibro and Chronic Fatigue (major FATIGUE!) She has found that pot helps with the Fibro pain a bit, but she also finds that if she smokes before bed she has a much better night of sleep.

She also takes the max dose of Provigil as well as Wellbutrin XL (she too just went off of Effexor XR, talk about side effects.)

Any other suggestions as to how to deal with fatigue, of course, are always welcome.

Peace,
Ayesha and her partner, Spiritsolace

[mopinko]

18. a sleep doc i saw felt the same

welbutrin did diddly for me. i have gotten a handle on the pain, but the fatigue is pretty implacable.