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LadyClair, thank you for your excellent post. i'm tempted to copy and paste it to my various doctors, with a picture of me sticking my tongue out at them..lol. While i've been able to avoid morphine so far, i do take lyrica, twice daily, as well as Fiorinal and Fexeril every single day. i also take a sleeping pill at night. In the past 3-4 months my insurance company has seen fit to cut me back on the sleeping pills and Fiorinal, without my doctor's permission or my own. ugh!!!!

One of the things that surprised me was the ignorance of my Rheumatologist who diagnosed the FM, but she only thinks it causes pain. I've mentioned the foggy brain i get, the insomnia i still suffer from and a few other symptoms, but she doesn't think they're caused by the FM. i wanted to tell her to just Google the damn disease and see what comes up at the websites of the Mayo clinic and the National Institute of Health, to name just a few well respected places that agree with those of us who actually suffer from FM. My doctor is about my age, so i've wondered that if finding a younger doctor might mean that i'd receive treatment that's more up to date. The only problem is that Rheumatologists are scarce as hen's teeth in this area, so i'm not sure what to do at this point.

i really do appreciate your post. It lets me know that i'm not the only one who, besides all the symptoms of FM, also suffer from high levels of frustration.

I am so happy to have been of some help to you. If anything, Fibro is one of the biggest life changing events of anything that could happen to you. I have two books, not terribly new, but excellent just the same. These contain huge amounts of excellent information. I find it absolutely shocking that your Rheumatologist doesn't know about Fibro. The first thing it is is a SLEEP DISORDER. My very first symptom was I became, literally, unable to sleep. I still have a vivid memory of the night it happened, although it is 25 years ago. I was sleeping and then my husband came into our bedroom and woke me up. That was the beginning. Amitriptyline is recommended for sleep. I absolutely must have it in order to sleep. If I forget, I'll sleep in short cycles and always nightmares. You sleep until you are just about to fall into a restful sleep, and that is when you wake up. Your body never reaches that state where cellular repair begins. That is why you're in pain. The cell damage that occurs when you are awake and moving, never gets repaired in sleep. That's normal for us lucky people with FM (poor joke, sorry.) Nightmares in sleep for some unknown reason. When they gave me this particular anti-seizure medication when I was in the hospital, I had nightmares every, single night. Thank God they cut that out.

I know what you mean about doctors, they are few and far between here also. I'm fortunate I didn't have to go through the hassle of looking for a new GP. I haven't seen a Rheumatologist in years, the one I saw was a complete jerk and ignorant and unsympathetic. He was this English gentleman who obviously had a very low opinion of women. I think he just wanted to get me out of his office so he could get to his golf game sooner.

The books: The first is older and the second is a second edition so it's probably not necessary to get the first edition, but I will include it anyway.

"The Fibromyalgia Advocate" Getting the Support You Need to Cope with Fibromyalgia and Myofascial Pain Syndrome by Devin J. Starlanyl, MD

Second: "Fibromyalgia and Chronic Myofascial Pain"
A Survival Manual
Second Edition by Devin Starlanyl
Mary Ellen Copeland

The second edition was published in 2001 and there may be something new at the bookstore that's better, but then again, who knows? If you can't afford to buy books, try your local library, but be aware of the junk and false information out there. There is no "take this, you'll be cured." Don't be fooled. I've been told several times over the years this kind of thing, and I tried everything. None of it worked for me. Stress is a big factor and the weather. I had instances where I felt fine when the sun was shining,and then when it clouded over, I felt like hell. Don't expect to have normal levels of energy, you don't. If you overdue it one day you'll pay for it the next. Please keep in mind I don't know how long you've had it, so I may be wrong there. I just know that the longer I had it, the lower my levels became. I went to school
(I was 32) and cared for two small children when I first developed it.

The foggy brain is a HUGE factor and a poor memory. Every woman who has this terrible disease will tell you that. I think if this disease effected men, we'd see a great deal more study done on it. However, 99 percent of the time it's women. The disease is spreading like wildfire. I personally think it's something or some things in our environment that causes it. In the hospital, every time I mentioned Fibro to a nurse, they knew someone else who had it. Genetic factors are a part of it too. My sister has it, but not nearly as bad as I do. She continues to work, and she's 63, but she has a lot of yellow stickies everywhere as memory assistance. Thank God doctors, at least here, are beginning to believe this disease is REAL.

Low levels of Serotonin, which aids in sleep and MOOD, effects many things. Watch out for depression, and if it occurs, it WILL lift, don't let it get you down. Seek things that give you pleasure and spoil yourself some. Anyone living with this disease deserves it. Personally, I spotted this pair of shoes I want. I'm taking back a pair of boots I bought that I don't particularly like, so I can afford them.

Please, if there is anything I can do to help you, please don't hesitate to ask. I'd like to get to know you better, anyway. Friends?

If I can think of anything else to help you, I'll write to you, okay?

Lady Claire
aka: Bonnie

YOU CAN COPY AND PASTE EVERYTHING IF YOU CAN.

Hi, I am new to this site as of today and was just diagnosed with FM 3 weeks ago and was wondering what anti depressant you were on that can cause seizures? My dr put me on Elavil and i was wondering if that was the one?

Yes LMZ, i'm on Elavil but i don't have any seizures, just restless lags and jerking. So the elavil helps me sleep at night. I take 25 mg just at night along with klonopin.

No, I don't think it's Elavil. I would advise you to ask the pharmacist you go to for your prescriptions for the publication that goes with that drug and look at that for possible side-effects. It's required in pharmacies in Canada. If not available there, phone your doctor and ask him. I don't remember what the drug was myself, sorry. If the drug helps you, the doctor can piggyback an anti-seizure drug to go with it to be on the safe side. As far as I know, they're not absolutely certain why I had the seizures, so I'm going to be taking an anti-seizure drug for the rest of my life (thank God for drug plans). If there's anything I can do to help members, please write or post your message. Sorry it took four days to get back to you, I'm having computer problems.

I had seizures from even a low dosage of Elavil (generic name is amitryptaline) many years ago, and have always had bad effects from any type of anti-depressant. BUT I've never been depressed and never believed in them using that type of medicine to treat pain, so I don't and never will again take any anti-depressant! And LadyClaire, Devin Starlanyl that you mentioned as author of those books, you may or may not know, she's a doctor who actually has Fibromyalgia. She wrote the first book I ever found about Fibro, and I was in the bookstore when I saw that big blue book on an end cap of an aisle. I'd just been diagnosed at the time and was still in shock trying to figure out where to go next, and I probably made a fool of myself but I don't care. My husband was with me and I walked over to the book and picked it up and held it close to my body and said" A book about fibromyalgia, they have books about it"!! I've read every word I can find on the subject now, and feel like a doctor myself, LOL!

One thing i do, when ever i get a new medication, or start having problems with a current one, is to Google the name, either generic or brand name will do, to find out what side-effects it can have. The other thing i do is ask the pharmacist about it, since they know more than most doctors about the various medicines and what can happen when accidentally mixed with others.

i know what You mean, soulshine, about finding books and articles about FMS -- totally ah ha moments for me too..lol. Most of all the reading i've done, as well as talking here with y'all, is that it reassures me that i'm not bonkers, or nor a hypochondriac.

:)

Excellent suggestion, Krikket, I never thought about Googling drug names. I guess I'm still not used to the world of computers yet. I also found two computer sites about Fibro. One is a Fibro clinic which deals exclusively with people who have Fibro or Chronic Fatigue Syndrome. It looks like there's some hope for us yet. We may not have cure, but we do have hope for treatments and drugs that will make living with these diseases more comfortable and less painful.