I asked a few days ago about opinions anyone might have regarding the Fibro and Fatigue centers. I am on the verge of going because I feel like I have tried everything else, but I want to make sure I am not being conned. (Fibro has made me cynical). I am most attracted to the idea that I think they would take me seriously and do whatever it takes, and also that they are willing to do blood work and tests that my physician hasn't even thought about. I have been to pain management centers, (2) and been told (twice) that fibro isn't real. You all know how much effort it takes to just keep trying to find a solution. My last great hope was Lyrica, which left me so depressed I was in the back seat of my car crying in the parking lot at work.
I can't afford the fees at the F&F center, so they would have to go on the credit card, but the other side of it is that if my quality of life is this bad, what does money and debt matter?
I don't know whether to be patient and try my family doctor again (she is really sympathetic but uninformed) or to just give up and go back to eating everything I want and self medicating with Sam Adams!
So I know there was a thread 2 years ago and all was positive about the F&F centers, but nothing recent. I would like to know if anyone has been recently.
Thanks people.
I can't afford the fees at the F&F center, so they would have to go on the credit card, but the other side of it is that if my quality of life is this bad, what does money and debt matter?
I don't know whether to be patient and try my family doctor again (she is really sympathetic but uninformed) or to just give up and go back to eating everything I want and self medicating with Sam Adams!
So I know there was a thread 2 years ago and all was positive about the F&F centers, but nothing recent. I would like to know if anyone has been recently.
Thanks people.
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Re: Please Please Please somebody answer this!
Thu, April 17, 2008 - 8:49 AMI personally have not yet been to a sleep center. I would like to ty one as well. What I do know if that if your spirit is telling you to go.... GO! Above all else, listen to and honor you. It is the greatest thing this illness has taught me.
I wish you peace -
Oz -
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Re: Please Please Please somebody answer this!
Thu, April 17, 2008 - 10:25 AMMaybe talk to your doctor about adjusting your dosage of Lyrica, if you haven't already.
About a week after I started taking it, the doctor increased the dosage. I got suicidal. Really bad. I thought I would have to be hospitalized. The doctor reduced the dosage again, and I was okay.
After six weeks he increased it again and now I feel wonderful. No depression, way less pain and fatigue.
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Re: Please Please Please somebody answer this!
Thu, April 17, 2008 - 12:03 PMI haven't done anything with fatigue centers...
but I have found a few solutions for getting some sleep...
first off... if you are having issues with Lyrica.. maybe Gabapentin would work better.. its a little different but works the same from what my doc tells me...
its never made me cry.. that's for sure... (although.. diff people react diff to diff stuff..)
I know its controversial around here... but... I'm on antidepressants.. and they do help some... you might talk about that with your doc...
Some folks are taking Cymbalta.. I'm going to ask my doc about this next time I see her.
Right now... I'm on welbutrin in the a.m. and a low dosage of trazadone at night...
probably not the smartest thing to do... but its working for me... everyone's diff...
Now.. for the sleep issues...
does your bed suck?
are you avoiding caffiene in the evening?
melatonin helps me a lot...
ummm...
I take my pills that make me groggy... at bedtime...
I take my pills that make me hyper in the morning...
... has anyone tried sleeping pills? I hesitate to suggest them because I don't take them... but... maybe someone else has experience with them.. do they work? do they not?
I think if I had the opportunity to do the fatigue center I'd probably go for it... if for no other reason that to get my problems documented so to speak...
blood work? hmm... I'm guessing this would be to rule stuff (other than fibro) out...
grr.. as for people who tell you fibro isn't real...
they are obviously not as educated as they'd like you to believe... :0\
not sure if any of this helps at all... but...
as a fellow fibro sufferer ... I figure putting my two cents in can't hurt...
hugs,
anni -
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Re: Please Please Please somebody answer this!
Thu, April 17, 2008 - 1:04 PMI had a similar reaction to Gabapentin, the unpatented sister drug of Lyrica. I thought the extra depression was just from fibro, but then an increase in dosage left me in the hospital with a death wish and funky sensory distortions.
I take Ambien at night, and I love it! Just go to bed right after you take it, because you can end up doing strange things that you don't remember later. One night I made a tin foil boat for our toothbrushes, or so I'm told. Food is also especially tasty. I've heard of some people taking Ambien to get to sleep and a small amount of trazodone to stay asleep through the night.
Denyce, I share your cynicism about fibro-specific treatment centers. I've seen so many products advertised at us by people that just want to make a buck off of our desperation. My two cents would be to have your doctor wean you off of the Lyrica and get yourself feeling as close to your right mind as you can before you make any decisions.
My primary care doc made a comment that bugged me, but it's very true: It's hard to find doctors that are interested in fibromyalgia. My answer to this is that I'm not particularly interested in having it, but if I have to deal with it then so should the medical community. My best luck so far has been a pain specialist, but I asked the receptionist if the doctor "believed in" fibro before making the appointment. We have little enough energy without wasting it on fools.
Good luck to you. I'm sorry things have been so tough.
(((((Denyce)))))
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Re: Please Please Please somebody answer this!
Thu, April 17, 2008 - 2:55 PM"made a tin foil boat for our toothbrushes"
omg... please forgive me molly... but that's just too funny..
...
roflmao...
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Re: Please Please Please somebody answer this!
Sat, April 19, 2008 - 2:42 AMThe Lyrica made me nutty and gave me some very bizarre spasms. To be honest it just scared me to death, so I went back to good old reliable Gabapentin. It definitely helps I DEFINITELY know when I haven't had it or miss a dose. Its the same with a friend of mine as well. I have been to a pain clinic where Fibro was an understood disorder, but it was a total joke. I got more out of the Physical Therapy than anything else and in the end I was absolutely pissed off about the bill, because I really did not have the money for the treatment in the first place. 3.5 grand down the drain!
I've got Ambien and it works about 50% of the time. It's like my brain is belligerent if it decides to be up for 36 hours then I'm up 36 hours no matter what I take to help me sleep. I actually get just as good results from Tylenol PM and let's face it that is a hell of a lot cheaper than the Ambien is.
I keep a journal every day to track my pain- where I hurt, how much I hurt on a scale of 1-10, any medications I am on and when they change even if it is just an increase in one I already take. The journal also allows me a place to yell, scream, complain, and say all sorts of nasty unpleasant things. It is a small thing you can do for your sanity and to help you recall what "therapies" you have tried and most importantly how your body responded to them. I look for patterns in it as well and report them to my doc.
Honestly it seems to me that you are already very unsure about attending this clinic. Have they sent you any information about exactly what services they provide for the amount of money you are about to fork over? Do they have former patients you can contact for feedback? Generally I am much more careful these days about coughing up any kind of serious money for treatments unless I can get a specific idea of what it is I am paying for. Would they allow you to tour their facility and observe some "programs' or "treatments" in progress. If not then I'd tell em to take a hike- just my personal experience talking here, but you are the consumer you pay them ; they are the provider and if they don't provide anything helpful to you then they aren't worth the money. They should be willing to have a counseling session with you up front and be able to outline a treatment plan. If they can't do that then they really aren't worth the money!.
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Re: Please Please Please somebody answer this!
Sun, April 20, 2008 - 1:11 PMI can't believe that they are still saying that Fibro isn't real... and after all that stuff about Lyrica or whichever drug, TV commercials, & the NY Times article...
I have certain reasons as to why they don't want to acknowledge these illnesses (CFS, Fibro, Lyme, etc.) but it's too much to get into. I'd be here typing all day.
In any case - it's all very hard for all of us... There are no straight answers. Some of this begins with the fact that we are living in a toxic world. We have to look hard for the causes of our illnesses & try the best we can to detoxify ourselves. Some people may have viruses, reactions to environmental toxins, bacteria, Lyme Disease, hormonal imbalances, allergies, etc. Drugs can help but it's also good to try to find out the root cause & deal with it.
With these illnesses - it's all trial & error. No one wanted a lifetime of illness. The worst thing is that so many people are in denial about the whole thing. It's not psychosomatic. There are a number of reasons that this false philosophy is being perpetuated. It's good that people are getting together & comparing notes for treatments. The authority figures are not going to help us. We have to help ourselves. Research, research, research!
Good luck everyone!
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