Fibromyalgia

tiffydawn wrote:I was wondering if anyone had any advice on how i could talk to my doctor or what questions I should ask about Fibromyalgia. I have been having pain for a long time that is noticebly worse the past few years that has alwasy been attributed to my back problems. In researching Fibromyalgia my symptoms match. Advice?

A rheumatologist can diagnose you. They took a lot of blood and ran all sorts of tests. Unfortunately Fibromyalgia comes by way of eliminating other diseases like lupus. Ask you doctor about it. You have to be persistent. I had come to the point where I would rather die than to continue living in pain before I decided to get firm with my doctor so don't let yourself get that far. Demand the be heard!!!!

rentonwa wrote:I am so sorry for all the pain most of you are going through - reading this thread just now made me realize that I'm not nearly as bad off as some people. I wish and hope that you all find more relief and help so that you can enjoy life more.

LynnB - I've never heard about the Fiber helping; what do you take to increase your fiber? I'd like to try that as it's a natural solution (I hate taking pills).

You can take a supplement or add something to a drink or eat oatmeal cookies(yum) and fruit and nuts. Benefiber has an orange chewable tablet and there are other chewables out there but once it was explained that fiber can keep your intestines regulated by making sure it had the right balance of fluid and so forth I started paying more attention to the fiber intake and that has really helped. I have been doing pretty good about 2 years now. That's also the time when I quit taking all the drugs and went to the one Xanax at night. Now I have to go make some oatmeal cookies now that you got me thinking about them.

i too have fibro and ibs [guess those two go hand and hand] and my sister has ms and we both have similar things go wrong, my sister and i live in tulsa,ok and here we get a program that gives us help with housework and shopping which is a real blessing for both of us. just thought some of the other people might be able to avail themselves to this help in different parts of the county, just look for home health. my sister and i are low income and live in subsidized housing and i know there are others in the same pot as we and we get help from the same place place as the food stamp programs wheather .it be DHS or SRS. just thought this info might help some. we both are on alot of meds and my sister takes a shot everyday for her ms, but still does afternoon naps. i have alot of trouble sleeping so i play my game alot and i find big fish such a blessing. when i play games i dont feel the pain as bad. i have to sit and sleep in my recliner and would love to go to bed, but it starts my pain up again . it nice to be able to read these forums and know im not alone with these problems , i also have major depression which means i isolate myself for days and weeks at a time, so my only outside contact is reading these forum, i look forward everyday to read mummypops posts she makes my day.

Sorry to ask the question, but what is Fibromyalgia?

I hear you Birdred, the isolation can really get you down. Feel free to PM me if you need someone to talk to or just to hear from occassionally. I have family and a husband so I'm not completely cut off but I have been there and that can be the biggest reason for depression, not that chronic pain isn't. That and depression go hand in hand too. We're here for you Birdred.

mistybig wrote:Sorry to ask the question, but what is Fibromyalgia?

Fibromyalgia is a skeletal muscular pain condition. It's pain in ligaments throughout the body and no one seems to know why. It happens mostly to women but some men do have it. You could google it and get a better explaination than I can give.

Thanks for that Lynn, will check it out.

Thank you so much to you all! I knew everyone would be able to help each other in support if nothing else. It is horrible to feel isolated when you can't leave the house and even though my husband is very good, he does not know how it feels. Sometimes it just helps to talk to other people going through the same things, kwim? He does all the shopping and going to get my meds and taking our 14 yr old daughter places. He is very sweet, altohugh he doesn't keep the house up like I would like I do things some days, then regret it the next. My biggest problem is that once I get started on sometihng I want to finish everything. If I could do it in moderation it wouldn't take days of recouperation. But, I tend to get in the middle and get carried away! LOL I want to get one of those portable hot tubs, I just don't have anywhere to put it!
Oh, also, has anyone tried inversion therapy? I keep seeing these tables advertised where you hang upside down and it stretches your spine and muscles, and wondered if it would be good or bad. love you all! (((HUG)))

Just a side note, that mercury, molds, lyme etc can contribute to fibro. A few of my friends have been diagnosed with fibro/cfs and with further testing with integrative or alternative doctos have nailed down those 3 as the prime causes. A lot has been dealt with by diet (gluten free, grain light, dairy free, some soy free).....basically focusing on meats, veggies, fruits and nuts/seeds.

Once the body starts accumulating more toxins than it can rid itself of chronic illness sets in, but it can be beat.

I, myself, do not have fibro but am borderline mercury toxic and have adrenal fatigue and leaky gut as well as celiac (the forum I'm on).

If anyone wants more info please pm me and I'll make sure I track some down or reask on the forum and also give out the web address and thread name.

Please allow me to share my story.

I was diagnosed with fibromyalgia in 2000, but my doctor thought it started back in 1996. I had all 18 pressure points (determined at two different times by two different rheumatologists). In fact, my original rheumatologist said to me, "If there was ever a classic case of fibromyalgia, you are it."

I had all kinds of nasty but typical symptoms, and got so bad at one point that I almost needed to stop working and nearly put a claim in with my disability insurance. I was always exhausted, always in pain. My doctors said that fibromyalgia was something I would struggle with for the rest of my life. I'd gotten pretty cynical, and had accepted the idea that I was going to have to live with fibromyalgia forever. I also has become an active member of a couple of fibromyalgia message boards online so I could talk to others suffering with the same thing I was. But...

In late 2003 several members of my church prayed for me, and in the course of less than a week, ALL of my fibromyalgia symptoms were GONE. I was totally NORMAL. For weeks afterward I was still astounded it was gone. No more pain, no more struggling, and best of all I was able to participate in life again.

Fast forward to nearly five years later...I am still completely fibromyalgia free. No flares, no pain....NOTHING. My faith is so important to me, and I truly believe in the power of prayer. I am a living, breathing example that prayers are answered, and that healing can and does happen.

I just wanted to share something positive, and would like to give others with this disease hope.

That is a touching story, Kymberlie, and I am happy to hear someone get pass the symptoms. I think probably everyone who has it prays for it to go away or a the very least pray to have the strength to carry it day to day. Fibro is a wax and wain kind of condition, it comes on suddenly and can remiss suddenly sometimes for years and doctors don't know why. But for you I will beleive your prayers were answered.

mistybig wrote:Sorry to ask the question, but what is Fibromyalgia?

In the UK it is referred to as Myalgic Encephalitis, or ME, I believe

shadowdiana wrote:

mistybig wrote:Sorry to ask the question, but what is Fibromyalgia?

In the UK it is referred to as Myalgic Encephalitis, or ME, I believe

No that's something else, we would have that here too but that's not it.

You can add me to the list of FM gamers, most late or all nighters usually are, can't sleep, addicted to something or obsessive. Somebody here saying once they start they can't stop doing things. Getting started is just as hard as stopping like housework or used to be gardening, or work. Then I pay the next day. Physical exercise can be a killer, worse flare ups.

I was one with "growing pains" too that came and went thru life, I had a rare fungus disease in the 80's for months of intense pain. It was cured but the pain never really went away, it just moves around if not all over aching, here and there. One week ankles, can hardly walk. Next week neck and shoulders but along with now arthritis of spine and right hip, and scoliosis I have at least 2 things going. Pain pills help the arthritis but don't faze the FM muscular. I avoid medications until desparate. I can handle one shopping trip a month for groceries, maybe 2 trips on my feet, but it puts me in bed when I return home with a Flexeril or I get severe spasms but sleep sound and well, then too foggy to think next day.

I've been on disability, SSI for 12 years, limited income but a great doc at a clinic on MediCal (Medicaid). Worst thing is stress, or getting off my "rituals" and out of sync, and sudden changes of weather, and over exertion so live a very sedantary life behind a computer. Long ago I moved it next to my bed to keep my feet up and not swelling, and now a laptop for games which I discovered keep my mind alive and forgetting the pain.

Best thing has been Omega3 capsules which can have dramatic results for awhile, waking up without hip and pelvis pain. My doc now tells all her FM patients to take it. Other best thing is a memory foam pad on my bed. It holds the body's heat so with contact it gives back heat on every pressure point like a bunch of little heating pads. I'm not a heavy person, 115 lbs now, 72 yrs old, so 2 inches of memory foam is just right. Thicker would be work turning over or moving. I sleep much better, still wake up every 3 or 4 hrs to turn over but not every 1 or 2 like before, wake up more rested, less sore. They can be pricey but if you check out Overstock dot com, you can buy any size 1 inch same price. I got a king size and folded it over to get 2 inches on twin mattress. If too warm in summer put more padding over it like a comforter. This is a self style program trial and error, PM me anytime.Try to avoid victim attitude, acceptance you can work with.

thanks lynn for you offer to talk!!! im just not good at typing!! i read someone wants to try hanging upside down i agree it sounds good, maybe get some pressure off, but i saw a study about it and it was talking about it leading to strokes, so be sure and talk with your dr, here its almost 6;00am and i havent been to bed yet ,todays game is not one im interested in , i did finish BUCKINGHAM PALACE it was a blast, it and TREASURE ISLAND are my kind of games. i had no problem with either one hope everyone has a great day!!!

I too have Fibro. along with scoliosis, sleep apnea, degenerative bone disease, sleep apnea which I see a lot of others on here have and I was wondering if the Fibro might cause the other things or if the other things might cause the Fibro. Does anyone know? I also have Chronic pain, chronic fatigue, vascular disease, degenerative bone disease, arthritis,and have developed asthma and chronic bronchitis in the last few years. I am in constant pain which none of the pain medications seem to relieve. I also take Lyrica which makes you want to eat so I have also gained a lot of weight. I had a stoke 7 years ago which caused me to start having siezures in 2004 from the brain damage so I have to take Dilantin twice a day.

Fibromalgia is a syndrome (FMS) including many conditions most of us have or have had, come and go other than the muscular pressure point pains. Can't really call them "symptoms", if you read a list of about 50 side issues you may like me have or have had them. We have very sensitive bodies, especially to cold. Our bodies are human barometers effecting things certain days.

I too started wheezing about 2 years ago after having had surgery, I had not had asthma since childhood, Advair daily clears the lungs. I don't respond well to even minimal doses antidepressants being more borderline manic, usually the startup prog for sleep docs try. 50mg Rx dose benedryl is good for sleep and safe, not the OTC mixes of 25mg. Helps if you have nighttime allergy too, when my asthma attacks would happen when young, dries up sinuses. I thought I had sleep apnea too, but a few hours into sleep my nasal passages and eustatian tubes close, not congestion, just inflamation. BreathRite Nasal Strips keep nasal open, more air gets to lungs, solved that. My ENT got me using 2 pillows, not one flat one, elevate the head, gravity helps keep sinuses from clogging up. Dairy aggravates allergies too, went off dairy 10 years. Hormone HRT therapy keeps more mental balance for me, feel better. In a big store like Target or Safeway the ear canals close shut and can't hear, lose balance. Doc says change of air pressure like planes then back in my car they open half way home. Just lots of weird body reactions to stimuli which can be corrected or helped with simple adjustments. I'm just grateful FMS isn't anything terminal, so do my part to try to lessen these annoyances. It's all from the brain sending wrong signals to sensitive bodies. Until a new drug comes out to correct P signals I've learned to just work on the effects with simple solutions. Keep gaming, great for mood, smile more for good endorphines.

This is for "sapphire child" but ANYONE can read this. Anyway I read your receent post. I too in the past 2 years have had immunity problems like you and what started it was the prednisone I had to take. That sent my antibodies into the toilet so I had to go off the prednisone but now I am not making antibodies to another disease and I am taking shots to bring the antibodies up to par. I was told I might have to take 5 shots before it works. I've had 2 so 3 more to go. Like you I can sit and play hogs by the hour and no pain, but when I go to get up oh god major pain. I am blind in one eye and loosing sight in the other. TV sometimes is fuzzy but the computer is okay. This is a condition with many factors playing into it and I also found that with the polycystic ovarian disease. Talk about a double whammy. I just wish there was something we could do or take to get us back to our normal selves. Take care all.

It still amazes me that the only accepted dx for fibro is the tender point test. We all share so much in common, thyroid, vitamin d deficient, sleep disorders, thyroid problems, memory problems, stomach disorders, RLS, unexplained weight gain, insulin problems but not diabeties, degenerative disc disease, osteoperosis at 2 young of a age, and the list goes on and many of these are dx with medical tests. and yet the medical community still has a hard time accepting its real. As for meds I have a new PCP who is really dedicated to giving me my life back, If you ask most fibro people whats the worst thing they will say (I miss me) meaning our lives are gone, I used to liken myself to a piece of furniture because I would have a lot of crash days and be passed out while cookouts or bdays went on around me. Lyrica did not work for me but i read about Salvella and asked for it and I seem to be doing better. i am not crashing as much, my appitite has improved and the pain has eased. (((((((((((hugs))))))))))))))) bella

ok question timeWhat was your worst FibroFog experience.
My worst was also my first tho I did,nt know it at the time.
I was on my way to therapy a place I had been going weekly for 2 months and I was about halfway there when I blanked on where I was going and why I was even in the car. I pulled over and sat for about 15 minutes then it came back to me. That was April 2006 and I have not driven since Bella