Anyone out there with Fibromyalgia who has had any sucess with treatment? Anyone sucessfully filed for disability due to it? Any help would be appreciated.

-- Deborah Bauderer (bearwaoman@Yahoo.com), March 23, 2001

Answers

I have Fibromyalgia along with Lupus. As the two are so intwined (at least for me)it is very difficult to differinate symptoms of each disease. My Doctor and I decided to treat the Lupus, which is the more serious of the two, and it helped all symptoms.

I have a friend that successfully obtained Social Security Disability Benefits based on the diagnosis of Fibromyalgia alone. It took her three years and she had an attorney. Her doctors documented everything very, very well. I think that's the most important aspect of any disability claim.

Stacy Rohan in Windsor, NY

-- Stacy Rohan (KincoraFarm@aol.com), March 23, 2001.

Hi Bearwoman, if you look in the archives, you will see a couple of long posts on fibromyalgia. I also have fibro/chronic fatique. Lupus runs in our family, so that is there also, but for now we are treating the fibro. I filed for disability 2 years ago, and have been turned down twice. I didn't have an attorney. Sissy

-- sissy sylvester-barth (iblong2Him@ilovejesus.net), March 23, 2001.

You might be interested in the www.truehope.com site on the web. There are some very interesting studies being done at the University of Calgary and the University of Lethbridge. See what you think. I have nothing to do with the product -- I am intrigued because my family has very high incidence of fibromylagia, chronic fatique and ADD/ADHD. I would be interested in hearing others comments. Cindy

-- Cindy Clarke (rclarke@revelstoke.net), March 23, 2001.

Hi Sissy,

How long ago were you denied? The second level is only a reconsideraton of the original denial. The third level is an Administrative Law Judge Review, it is independent and much more fair. I'd recommend having an Attorney for the Administrative Law Judge Hearing though. Just be sure, ask up front, if the Attorney will accept contingent fee. This means that you don't have to pay unless they get you awarded Social Security Disability and even then the fee comes out of your award.

I was a Disability Claims Reviewer prior raising horses. If I can help anyone with this, or any other type of disability claim, let me know. I've learned so much from this forum and I'd like to give something back.

Stacy Rohan in Windsor, NY

-- Stacy Rohan (KincoraFarm@aol.com), March 23, 2001.

I've checked the archives and appreciated that advice. I've been thru the ant-depressants, pain meds, etc. without much help. I'm a single parent, a 17 yr old son at home, and can't keep a job. In the past I'd last about 2-3 months before a flare-up knocked me down. I take Ginko Biloba for the brain fogs, Ginseng for energy. I don't have any medical....I'm getting worse, and am looking for info on how others are dealing with this. Thanks again for the responses.

-- Deborah Bauderer (bearwaoman@Yaho.com), March 23, 2001.

Hi Deborah, I have FM/CFS and have found that coenzyme Q 10 helps (50mg. once a day), and that MSM helps the joint pain tremendously, I take the "horse" version, it's cheaper, and I take a heaping teaspoonful in orange juice every morning (a heaping teaspoon is 4000mg.). I also take flax seed oil, a gram twice a day, and plenty of magnesium, at least 800mg. in divided doses, more if my joints are bad. I take all the other ordinary supplements in addition to these.

I do not relinqish control to this disease, so I would not ever consider filing for disability, as a lot of this disease is related to mental attitude. I am a fighter, and will never give up, or in, to it.

My symptoms were greatly relieved by giving up most all meat, and all dairy products, although I can eat yogurt and hard cheeses. I believe diet is a "trigger" for FM, and if you can eliminate the "triggers", you will help your symptoms greatly.

-- Annie Miller in SE OH (annie@1st.net), March 23, 2001.

Annie,

Thank you for the advice, I will give it a try. Just a note though, while mental attitude is a factor in life, it isn't always the fixer. I haven't given up either...but I also have hit the point where I can't maintain an income. Not don't want to, but can't. I do all that I can on my good days and struggle through on the others. I managed to finish a semester of college and then crashed. The fogs rolled in and I had to drop the 2nd semester. I was retraining to try and stay employed. I watch my diet, exercise as much as I can, and stay optimistic. Thank you again though. I've tried the magnes. but couldn't tolerate it. I'll give the others a try.

-- Deborah (bearwaoman@Yahoo.com), March 23, 2001.

Annie,

I had your attitude for almost 3 years, I ended up in ICU on megadoses of steriods for 4 days. I worked and lived, if you could call it a life, by downing painkillers and caffeine. It wasn't worth it. I finally "gave in" to the disease and I've been happier and healthier for the decision. I gave up a lot material wise (I had a very high paying but stressful job) but I'll never regret my decision. Sometimes will power and determination are not enough...

Stacy Rohan

-- Stacy Rohan (KincoraFarm@aol.com), March 23, 2001.

I'm 18 and was diagnosed with fibromyalgia about 2 years ago. After being on about every antidepressant in the book, various steroids, heavy duty painkillers, and anticonvulsants, and having none of it work I became extremely depressed and was hospitalized twice. Some days the migraines are so bad I can't even focus my eyes, but I've found that I feel the best about myself on no meds. I was tired of going to various doctors twice a week. One thing you may want to look into is neurally mediated hypotension, which can be lying beneath fibro. and also postural tachycardia. Hope that helps!Take deep breaths!

-- Elizabeth (Lividia66@aol.com), March 23, 2001.

My doctor said I had Fibromyalgia because he couldn't find anything else to call it and I had the points. It turns out I had a chemical overload (built a new house; particle board, stain, new carpets, etc) and food allergies that made me sick. Many of the same symptoms you mentioned and more. I stopped sweating, would tire walking up the stairs to the second floor, be depressed, brain fog...I'm about 95% better now but it was a long and frustrating time.

Two books that helped alot were: IS THIS YOUR CHILD? by Dr Doris Rapp and THE E.I. SNYDROME by Dr Sherry Rogers. Dr Rogers was chroniclly sick before and during her studies to be a doctor. She healed herself and has written many books about chemically produced illnesses and how to get better from them. I also had a chiropractor who was knowledgable (he was into alternative medicine already)

Oh, if I eat something that I'm allergic to or be exposed to an odor, I will have headaches or memory loss, brain fog, depending on the stimulis and reaction.

I just wanted to mention this because not many people know about this stuff yet but it's coming out more and more. Good luck and if you want to hear more, please e-mail me.

PS The doctor wanted my son checked for ADD. Turned out it was milk allergy. Took him off - whole personality change. I can always tell if he cheats.

-- Dee (gdgtur@goes.com), March 23, 2001.

I have fibromyalgia and lupus. My lupus meds weren't helping the fibromyalgia, but one medicine made all the difference in the world and practically gave me my life back (at a slower pace though). That is the drug Flexeril. It is a sleep aid, real mild, non-addictive. It helps my muscles relax when I sleep so I get rest. Without it, I don't rest as well. Rest is so very important in dealing with fibro, as well as staying on a sleep schedule. No late night parties, you gotta get your rest! :-)

Cindy

-- Cindy in Ok (cynthiacluck@yahoo.com), March 23, 2001.

My husband has Fybromyalgia and chronic fatigue, has had it for 15 years now. He is so bad at times he can only sit in his recliner with his heating pad. We are doing all of the things that you all are, but one thing that we found helpful that I don't see mentioned is SAM-E. It is a supplement/anti-depressant that works really well on the pain, you can get it at Costco and most stores that sell vitamins.

-- Eloha (eloha3@yahoo.com), March 24, 2001.

Hi everyone, I have had chronic fatigue for 15 years. I was almost bedridden for about the first three years. Six of those 15 years I had the Fibromyalgia. I have tried so many many things, drugs, natural, spiritual, herbal, colon clenses, diets, products, and products....you name it. Each time I tried something different it seemed to be the answer, until I realized (through my brain fog) that it seemed to go in swings anyway. The fatigue has sort of run it's course now, that is, if I get enough sleep. I did find help for the Fibromayalgia tho, and that was vitamins. I usually never endorse a product, but in this case it was Shaklee vitamins that helped. I started taking mega doses of them, (you cannot overdose on this brand, no artificial ingredients) and within 3 days I had lost the muscle pain. Quit...it returns...back to the vites. (I've been taking them for 5 years now, still no muscle pain.) I had tried all sorts of vitamins before and never had any relief, these just seem to be the only ones I could absorb. I'm not saying this is a cure, maybe it just boosts your immune system to do some fighting, maybe it just gives the muscles something they were lacking, but I have talked to several other people who had the same result. I do not sell the product. They do have a plan where you listen to cassette tapes and get $100.00 worth of vitamins...that is how I started taking them. I listened to one of the tapes that described me to a tee and took all the same ones the lady talked about. (I had all 60 some-odd symptoms!) Shaklee has a web site, or there is usually someone around town selling them, they are pretty expensive tho. No insurance for anything here either, not enough points for disability. I sympathize!! tang

-- tang (tang@mtaonline.net), March 24, 2001.

Cindy in OK, yes, the Flexeril works great, but, it is a schedual 3 controlled substance, and highly addictive, read all the literature available on Flexeril, don't just take your doctor's word on it. Use only when absolutely necessary, and then just a half dose if you can manage it. I was taking it twice a day, then realized how addicting it was, now I only take it when I get the migraine that happens if I eat stuff I shouldn't.

Diet has everything to do with this disease, it takes time to figure out what you can eat, and not, but it's worth it, not having to be drugged up to get by. Drugs just cover up the symptoms of disease, they don't cure it, changes in lifestyle/diet CAN cure it, or at least stop the progression of FM and greatly relieve the symptoms.

Many people don't realize the negetive effects that NSAIDS have on the immune system, even aspirin makes your white cell and killer T cell counts drop, the more you use NSAIDS, the lower your white counts will drop, and the stronger FM will affect you. Now I don't touch NSAIDS at all, wish I knew this 20 years ago when I used them 3 or 4 times daily to get by.

-- Annie Miller in SE OH (annie@1st.net), March 25, 2001.

My wife had fibromyalgia for 6 years. She is doing much better now and we are confident of a full recovery. We spent a lot of time and money on naturapaths, MD's, chiropractors, biofeedback, etc. The only thing we hadn't tried yet was psychologists which were recommended by some doctors. Two things helped the most although there may be some other hormonal influences. 1. Hypothyroidism causes suppresion of the immune system allowing a host of things to successfully attack the body. In the past doctors treated this by prescribing dosages of T4 untill the symptoms of hypothroidism disappeared. With the advent of the TSH test doctors no longer treated symptoms but stated if your TSH level was within 0-5 you were fine. My wife's level was 5.5 and the doctors said it was high normal and not worth bothering with. .... Hi,this is Jill. We have to talk! I know what you're going through. I had it for over six years and NOW I'M WELL. You can contact me at jill@layne.com. In case we don't talk, find Mary Shomon's book, but better yet her web site at about.com. Under search type about.com. Then type Mary Shomon.

-- chris engle (engle_c@yahoo.com), March 26, 2001.

I haven't been diagnosed with any of the diseases your talking about, but the symptoms sound familiar. I feel like I'm getting worse and I keep trying to figure out an herb that will work. I thought it was my heart, but that tested ok as did my lungs. I have joint pain and chronic fatigue. I don't smoke but I do drink to much caffiene. Can this make it worse? I have a constant pain under my left shoulder blade but they've check my gallbladder and stomach and told me it was irritation to my duodenum. I quit taking the hormone my GYN was giving me because it was causing vascular swelling in my legs. I wonder since so many of us had fathers in WWII or Vietnam if maybe this was passed on because they were exposed to bombs and/or chemical agents? This is really scary! At least now I don't think it's all in my mind. You've all encouraged me by seeing that you just deal with it one day at a time and share your experiences.

-- Vickie Allen (ouvickie@hotmail.com), March 27, 2001.