# What is fibromyalgia? Let's talk!



## Guest (Jan 22, 1999)

Hi all - I've been on the IBS site and have seen several questions about fibromyalgia. Decided to describe it for those who are wondering.First of all, fibromyalgia is a fairly new illness (not new to sufferers, new to categorization as an illness). At one time, those who knew, called it simply chronic fatigue syndrome or (being a sufferer of fibro and at a memory lapse can't think of the other thing they called it - help anyone?) Anyway, they are now thinking they are part of the same disease, just different facets of it. The info I have read indicates that it primarily affects women of child-bearing years (we super-moms), or those who have experienced a bad accident, surgery, or some sort of bad emotional trauma. However, men are NOT left out (lucky guys!) and my 73 year old mother was recently diagnosed with it (although I know she has had it for many years and was not diagnosed until I insisted she see a good doctor). Yes, there MAY be a genetic link!Symptoms vary from person to person, but the main symptoms seem to be pain in pressure points (upper back, lower back, abdomen, upper chest, neck). Go to a good search engine and type fibromyalgia. There are many good sites for more info and charts on pressure points. Other symptoms are (can be) chronic fatigue, memory lapses, joint pain, muscle fatigue or spasms, sleeplessness, depression (which I attribute to feeling sick all the time and being told by almost everyone what a hypochondriac you are - just an editorial opinion of mine!), IBS and others which vary from person to person. I happen to experience double vision and headaches at it's worst. I have a friend who has MS and our symptoms are almost identical. The big difference seems to be, mine come and go - and I have no muscle weakness. MS will get progressively worse, while fibro seems to stay constant from attack to attack (for me, anyway, everyone's experience seems to be different).How to diagnose? Find a GOOD doctor who KNOWS about fibro and then you go through a process of elimination. They will test you for lupus, gall bladder, arthritis, thyroid, sugar, upper and lower bariums (if IBS is present) and many other things. When they all come back negative (and you sink lower into your hypochondriacal depression), it is finally diagnosed by process of elimination. Please note - the doctor part is essential! And having a fibro-savvy doctor is absolutely essential!I hope this helps. Does anybody have anything to add?


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## Guest (Jan 22, 1999)

Heykate,Your talking my story!I don't think I have anything to add right now...it's taking ALL I've got to talk about this







sass


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## Guest (Jan 22, 1999)

Hey Sass!Hope you get to feeling better. You really are suffering right now, aren't you? Would it be worth it if just you and I chat on this sight? I can't believe we are the ONLY ones suffering with fibro. I know at least seven people who live near me who've been diagnosed with it - more than people I know with IBS! Either we have better doctors here, or there really IS something to that air or water pollution thing, and I am living in a cluster! I hope others find this sight.


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## Guest (Jan 22, 1999)

Heykate,We Must be at the computer at the same time as we are posting minutes apart!Yes I am suffering right now. To tell you the truth it is almost more mentally & emotionally than anything. Pain I have learned to live with & manage but what I CAN'T except is what this does to my mind. The lack of concentration & forgetfulness infuriates me to the point where I just want to sit & cry. But I don't because I refuse to let it win.I know this spell will pass,(as it always does)but for right now I have to actually concentrate like mad to get my damn fingers to hit the letters on this keyboard! I can think of something to right & then in the next second it's GONE from my mind.When I say that is taking all that I have to talk about this it is because I hate it SO much that it's almost too upsetting. But I'm willing to try & I'm hoping this bb will help me as much as the ibs one has.Good luck to us all!sass


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## Guest (Jan 22, 1999)

Hey, SassI guess we are at the keyboard together. My boy is sick and stayed home to take care of him (does sitting here reading about IBS and fibro and answering constitute taking care of a sick kid?) Anyway, have I mentioned how the chiropratic has helped me? I KNOW how you feel. The chronic fatigue and memory lapse part are the hardest for me to deal with, too. It really sucks out the self-esteem cause you FEEL stupid and lazy even though you KNOW you aren't. And positively NOONE understands - they just tell you you just HAVE to get on with it. You really have to have been there to get this. I know it will pass. It always does. Like you, mine tends to follow a pattern. First IBS, then pain, then chronic fatigue, (and not always in that order) then I'll actually have a week or month of respite only to have it start all over again. Have you been following the auto-immune and allergy discussions between Duane and Rose? I KNOW there is something to it! I find my worst outbreaks are after my fall and spring allergy seasons. I'm truly beginning to see a pattern and find myself dreading June and October (remember, I'm in Maine so the allergy season for spring will be later here and earlier for fall). They are the WORST months for me. I can barely get out of bed in June and October. I have another bad spell now (not quite as bad as June and Oct) I think because of the stress of Christmas. Do you see a pattern in your outbreaks?


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## Rose (Mar 25, 1999)

Now hear this nonsensical pattern to my hubby. We live in Wisconsin, and he can be a real weather predictor, jaws, facial pain, facial swelling a real big time crab ass, but he waether he predicts is not the storm fronts hear but rather the ones in Minn. Now we assume that has to do with the barometric pressure. He seems to be worse from late Sept until about Feb.He is being treated as if he has fibro, but doesn't have a 100% diagnosis yet. The symptoms have been going on for some time a minimum of 4 years.I'm really excited to talk with someone who has it. Our dr.has told me that women talk about illness and try to figure things out to make it better while men just want it better.


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## Rose (Mar 25, 1999)

Heykate, Am empressed with your articualtion of Fibro.It is a terrific start to this board.


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## Guest (Jan 23, 1999)

Thanks, Rose!I'm assuming your husband is having or has had all of the tests pretty much available to mankind. That's how we fibro people live. Tests, tests and more tests. TMJ (I THINK that's what it's called - I'm so fuzzy this morning!) (the jaw thing) has ALSO been associated with fibro - and I forgot I also have that one from time to time. They think it may be associated with grinding your teeth as you sleep. Which makes sense since fibro sufferers have trouble sleeping. Does your husband sleep well? There is a thought that fibro is associated with a sleep disorder - hence why women with children and menopausal women (and people who are tense and/or anxious in nature) tend to suffer with this more than the normal, happy population. There is a theory that we don't get to that fourth and most beneficial stage of sleep, that we always hover in the third stage of sleep. And yes, we ARE crabby! It's that feeling bad all the time thing. Makes ANYBODY crabby. Plus the fatigue is just overwhelming. On another note - you write a lot to Duane on the other board (I noticed) and I'm still wondering about that Chronic Fatigue stuff. Everything I read seems to conclude that the prevailing theories are leaning toward chronic fatigue and fibro being part of the same illness. I can attest to the chronic fatigue. I went to bed last night at 10:00 and had to force myself out of bed at 9:00 this morning. I'm STILL exhausted. However, I have definitely got the other symptoms of fibro. Let me know.


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## Guest (Jan 23, 1999)

Hi everyone. Wow, am I ever glad to find you all! Keykate, I sent you an email because I didn't think I would find this BB for Fibro, but when I went looking, I got it. I have been suffering the past few days with bloating, and severe pains. In fact, I was taken to the hospital by ambulance and put on morphine for several hours. The morph. didn't take the pain away. It eventually subsided by itself. I was diagnosed with Fibro. about 3 years ago, and have had recurring bouts of IBS for quite a long time. I have nothing to more add at this time to 'kate's' very articulate contribution, but I'd like to say that I'm glad you're all here to talk to and a great big thanks. [This message has been edited by Brava (edited 01-23-99).]


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## Guest (Jan 25, 1999)

Hi everyone I am so glad this discussion on Fibromyalgia has taken off. On Saterday January 23,1999 I slept through the night for the first time in 3 weeks , and last night I was up again. I know you people who suffer the same thing will understand when I say I have been kinda grouchy for a while. I have had IBS for 15 years, I have not been officialy diagnosed with fibro, but my doc knows about fibro because of another patient he has , and says I do to. I didn't have this many problems until my hysterectomy I think this triggered things. I started out with comeing home from the hospital with mono, my doc teased me and said it was a teenager disease calle the kissing disease and how did I get it. Since then its cronic bladder inflamation, I have always had an intolerance to heat or cold, my eye doc. last summer sent me to my family doc. because as hard as she tried she couldn't help me to see 20/20. my eyes had change so much and I can tell you now they are back to normal. I have mood swings , arthritis in my back and hips, my arthritis was found last March or April I was having a hard time moving around so now I make myself go out walking as often as I can. It has helped the hips a lot. My worst problem I had to try and talk to my doc about was my panic attacks . I had know idea what was happening I was terrified. There are many other things that have come about in the last 5 years. But I have to leave something for later. Cat B


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## Rose (Mar 25, 1999)

Yes, my husband has and will continue to have lots of tests. The tmj thing was one we were fairly sure he didn't have. A specialist talked us into a special dentist and that was alot of wasted time and money. He has sleep aepnea of that I am fairly certain and as long as the meds are stopping his snoring and he is sleeping better we are not about to do sleeping tests.


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## Guest (Jan 26, 1999)

Cat B - welcome to the board. Great to have you aboard (hate those puns!) It IS a nasty thing, congratulations on sleeping! It feels good, doesn't it? Not surprised yours started after surgery. There are suspicions that surgery could be a trigger. Any physical trauma, actually. And surgery certainly falls into that category. Have you checked the fibro sites yet? There's lots of info on them you might find helpful. I'm always copying stuff and taking it to my doctor. Rose - how are you? Would you believe MY fibro and chronic fatigue started after my husband began snoring louder (translate that into getting older.) I began to suffer from it about 9 years ago. It got so bad, we decided to sleep in separate rooms. Guess what? It got better. So we don't sleep together a lot anymore. While it hasn't been great on our marriage - I sure feel better. He's going to go to a sleep clinic this summer. Hopefully, this will stop the snoring and help the marriage. Pretty much in everything I read, sleep (or the lack thereof) seems to be a common factor in these diseases. What's amazing is that he is healthy as a - well, you know. What meds is your husband taking?


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## Guest (Feb 4, 1999)

Hi everyone! Have you all been hiding in my closet for the last 10 years??? Most every difficulty you are struggling with I'm saying "Me too!" The most painful part is the Dr. saying "It's all in your head" as he refills the antidepressant. Do any of you sleep with a heating pad for your back, knees and ankles? I can't seem to drift off without. A new doctor diagnosed IBS and a physical therapist steered me towards this website. Thank God someone understands! Any advice so I can find some relief?


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## Guest (Feb 4, 1999)

Hi,jlrPresley (is that your last name, or are you an Elvis fan? Just curious). Welcome to the BB. Seems like you are doing all the right things. I, too, use a heating pad and it helps a lot. As far as the fibro is concerned, massage has been mentioned as a pain reliever - whirlpool tubs as well. I often (not always) get relief from Ibroprofen. Some use anti-depressants with success (I can't take them), and a new therapy - guaigenesin (the cough medicine).As for the IBS, it seems to be hit or miss. And different things seem to work at different times. Diet (many have mentioned herbs supplements - I've tried many and they all make me nauseous - no idea why), exercise, relaxation exercises (also a fibro reliever), calcium supplements (read a lot about Caltrate - I take TumsEX - the orange creme yummy ones - and have actually felt better), tranquilizers, Immodium or Pepto, prescription anti-spasmodics are all things which may work either alone or (most likely) in combination with others. Everybody seems to respond differently to different methods so it's basically a process of trying and using or eliminating things that work (or don't). Getting a good doctor who isn't afraid of fibro or IBS is essential. Don't waste time on those who tell you it's all in your head. That usually means "I'm stumped and don't have a clue. (Plus I'm ignorant and don't feel like educating myself about fibro and IBS)" They're out there. Feel free to e-mail me at heykate###acadia.net any time. Hope this helps a little.


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## Guest (Feb 5, 1999)

My sister has fibromyalgia and she does not have a good doctor.She is also a young mother of two children and I would like to help her with information on how to cope, deal and live with this. She lives in Essex County, Canada If someone can reccommend a good doctor, I would greatly appreciate it.------------------annie


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## Guest (Feb 5, 1999)

Hi Annie,Were exactly are you talking of. I live 2 hours from "a" Essex county but I think there may be more than one. Sorry I can't help you out more on that note, but I do understand your sisters troubles as I am also a young mother of two. If your sister has acsess to e-mail & would like to contact me for support she is more than welocome to do so.Good luck & bless you for trying to help her.sass


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## Guest (Feb 5, 1999)

Hi, Annie. Does your sister have access to the net? There is some awesome info in several places. Just log onto a favorite search engine - infoseek, lycos, looksmart, excite, etc. and key in fibromyalgia. There are several places with lots of info. Some of you know how cheeky I've been in copying it and taking it into doctors' offices. You might even find a site with recommendations for doctors. I know that in Bangor, near where I live, there is actually a doctor that *specializes* in fibromyalgia. Now, you all, pick your mouths up off the floor, you read me right. So, I know they are out there. Tell your sister that from the info I have read, women with young children are prime candidates for fibro because they can't get a good night's sleep. Between the little tykes being up all night and the stress we all experience raising families, it just plays havoc with our sleep cycles. Makes sense, because fibro seems to be related to the body not getting to the 4th stage of sleep - the one so necessary for regeneration of body tissue. There's a lot more out there. Good luck, Annie. Keep us posted. E-mail me anytime you'd like a more personal ear.


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## Rose (Mar 25, 1999)

Just wanted to bring this to the top, so that new people on board could see it.


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