Chronic Fatigue Syndrome Support Group
Chronic Fatigue Syndrome (ME/CFS) describes a sense of exhaustion and post-exertion malaise, even when you have gotten enough rest and sleep. The disease is characterized by six months of incapacitating fatigue experienced as profound exhaustion and extremely poor stamina, and problems with concentration and short-term memory. The cause is unknown, but it is a...
OK, dealing with new Dr as old Dr moved. Problem....new Dr wants me on PROVGIL and from the pharmacy info the makers aren't even sure what is it in that "helps" chronic fatigue. So, I could end up down the road with one of those class action lawsuits that state "IF YOU HAVE EVER TAKEN BLAH BLAH DRUG, YOU MAY BE ENTITLED TO A SETTLEMENT. CONTACT THE LAW FIRM OF BLAH BLAH." Am I being too cautious?
Dr. did ask me about bio-feedback and I told him I already do meditation for pain and that it helps. I explained to him I used to work 60 hr work weeks and still able to keep up my housework. He said it would help my condition to reduce my stress....yeah, I know," bright one", but again only death stops stress.
The pharmacist recommended something else is the same class as PROVGIL but my new Dr said "no" he wanted to leave that as a last resort only as we are running out of options. Yeah, like I didn't know that one.
I really can't afford PROVGIL and if I don't qualify for "free" through the maker, I'm screwed. $220. per month but I still need to check Canada.
I'm just exhausted from being exhausted and when I ask a reasonable question on a class 4 med, which means it is so far down the med list it can be called in via phone, I get shot down. It was only $25 per month!
I'm just flat plain worn out TIRED. I'm 46 and live like I'm 106. I take 2 hr naps, no help but necessary, and go to bed at 9 PM, no help but necessary. The rest of my day is just wasted because I feel like crap and sleep so much plus I don't seem to get anything accomplish because of being so tired and have wasted valuable time SLEEPING.
Answers? I don't have any. Really, at this point, death is the only "cure" that I suppose there is.
Good God have mercy on me.....life is passing me by and I feel as if I only on life support making it thru one day at a time with no purpose and no plans because of my physical health issues.
ARGH
Dr. did ask me about bio-feedback and I told him I already do meditation for pain and that it helps. I explained to him I used to work 60 hr work weeks and still able to keep up my housework. He said it would help my condition to reduce my stress....yeah, I know," bright one", but again only death stops stress.
The pharmacist recommended something else is the same class as PROVGIL but my new Dr said "no" he wanted to leave that as a last resort only as we are running out of options. Yeah, like I didn't know that one.
I really can't afford PROVGIL and if I don't qualify for "free" through the maker, I'm screwed. $220. per month but I still need to check Canada.
I'm just exhausted from being exhausted and when I ask a reasonable question on a class 4 med, which means it is so far down the med list it can be called in via phone, I get shot down. It was only $25 per month!
I'm just flat plain worn out TIRED. I'm 46 and live like I'm 106. I take 2 hr naps, no help but necessary, and go to bed at 9 PM, no help but necessary. The rest of my day is just wasted because I feel like crap and sleep so much plus I don't seem to get anything accomplish because of being so tired and have wasted valuable time SLEEPING.
Answers? I don't have any. Really, at this point, death is the only "cure" that I suppose there is.
Good God have mercy on me.....life is passing me by and I feel as if I only on life support making it thru one day at a time with no purpose and no plans because of my physical health issues.
ARGH
The fact that your also sleepy means you may want a sleep study. As being sleepy and tired are in someways separate. And in my guess it seems to favor the chance that provigil and something like an adderall (amphetamine) would also help with your wakefulness. I had no reason to dislike either drug I mentioned really. But everyones different and I haven't studied the stuff enough to know much, other than that they work great for me (especially provigil). Adderall on it's own is ok, but the combination of the two is something. Best of luck!
P.S. from what I've read, they don't know how Provigil works really. They said on wiki-pedia that it in part may have something to do with the Orexin (hypocretin) mechanism. Particularly orexin-a (whatever that means)
P.S.2 I'm not shy with taking any drug, because I never have any bad reactions to them luckily, except for Cymbalta and and a couple of the Cillin's, penicillin etc.
That's a pretty obvious source, but I like it. also the skin rash seems to be fairly uncommon, but I don't know what source I saw that from. It wasn't this source.
I have never tried Provigil,so I don't have any advice ,I just wanted to offer you my support and tell you that I can really relate,and that sometimes it does get better.I wish you the best-Jen
The "hold out" last measure med is a weight loss med which will "pep" me up but I suppose it is a last ditch effort as it is "technically" a weight loss med.
Thanks for you info.
Thanks for your input and understanding.
May I borrow that please?
Ok, here's me again, jumping about on hormones. Have you had your GYN tests to make sure you're not in peri/meno?
That being said, I'm med sensitive too, and my GYN and my compounding pharmacist seem to think my CFS was undiagnosed periomeno/hormone issues. Way back when, mid to early thirties was considered too young for peri hormones.
It's NOW known THAT IT WASN'T TOO YOUNG.
Anyhoo... I heard about Provigil around 2000-2001, and I haven't tried it because I've had a lot of sleep dep problems in the past, and now that I'm finally sleeping well on my own more and more often, I'm not going to put anything into my body that might mess that up.
I can't even take 1/4 of the real Sudafed in the early morning, and not get insomnia that night.
I take my chelated Cal-Mag and Vit A/D gels at dinner, and that has always seemed to help my sleep - except when the hormones demand to be heard.
I know not everyone can take those.
That's just my blithers..... don't know if they help.
Good luck if you should decide to try it.
Neither one works for me if I don't take naps in the morning and then take a minimal dose at noon.
If I take the meds without the naps, I'm still very much aware of how tired I am, but the meds seem to pump up the adrenaline causing a very uncomfortable feeling throughout my body, especially heart - as though part of me is taking off without the rest of me. I compare it to sitting in a car, revving the engine so that the tires are spinning, when suddenly the car takes off, leaving you sitting on your butt in the driveway, with the steering wheel in your hand.
Their income cut-off is set quite high so many people are probably eligible. The new Cephalon Cares number is 1-877-237-4881.
Re: Ritalin - my doctor refused to prescribe it. She prescibed Adderall and as long as it's not the brand name or XR, the cost is not so bad.
I appreciate FIC's recommendation about getting meds from the manufacturer - I did that with Provigil and somehow never thought of that re: Adderall, which I actually prefer.