Fibromyalgia Support Group

Hello there. I am new to this site, forum, etc.

PLEASE read my story (and feel free to reply!). I KNOW many of you will relate to my story.

I believe my health problems began when my children were much younger. I did have Epstein-Barr Virus and it does recur. (Something which a blood test revealed to a previous doctor! Who was shocked but believed in the blood test.) After years and years of going to the doctors, then stopping, then going again, I have found some Hope! (More on that later.)

First I must share a FEW of my horror stories. How about this one, especially gift-wrapped from the Director of 'Thyroid' medical treatment at OSU hospital. It was his "expert" medical opinion that I was just a 'little high-strung' and I should 'have a glass of wine with dinner.' ANYONE relating? And another...from the Head of Rhematology: 'It is depression, nothing else. Fibro. doesn't exist. You are tired because you are depressed. Take these anti-depressants..' Uh, no thank you. I am NOT depressed (at least that's not the primary dis-ease; perhaps it is secondary). And my primary caregiver told me she simply 'didn't want to learn anything new about Fibro. and Fatigue'. She didn't have time! I wish I had a penny for every time I was told IT WAS ALL IN MY HEAD! No, it's not. BUT the biggest point is that WESTERN MEDICINE DOESN'T CARE! I say this because I have lived this for years and years and years. And I know.

More than muscle pain for me is the fatigue! (CFS) however I do have muscle pain, too. BUT since I don't have each and every 'trigger point', OOPS! It can't possibly be Fibro.? (Why?) So if I broke my leg a little bit, then in isn't 'really a broken bone'? What kind of logic is that?

LADIES (and GENTS), I DO know about broken dreams, PAIN, and being told endlessly 'it's all in your head'. And then YES, my spouse just doesn't know WHAT to believe. Although, after YEARS, he does finally understand (a little) that MAYBE I am a little frustrated from the GOD-LIKE, omniscient attitude which MOST doctors I have seen, present to me! SORRY, but NO MALE DOCTOR will EVER KNOW WHAT IT IS LIKE TO GIVE BIRTH TO 2 CHILDREN AS I DID! And NO DOCTOR E V E R Will know the pain of Fibro. and/or C.F.S./Fatigue! Unless they experience it themselves. I have found some help with a few things: ONE is Malic Acid. It is sold thru places like Puritan Pride. And I have begun to see an alternative Naturopathic doctor. And after only one week, I do feel a bit better! He addressed my THYROID, and my PITUITARY. Truth-be-told, I am not thrilled with the Nature doc., but at least he didn't tell me it was 'ALL in my head'!

Oh, I see that many of you have had early hysterectomies; me too! I was 35 and have been on H.R.T. since then with NO problems. However, I DO believe that my hormones did get 'out of whack' after my whole feminine identity was removed! (Aside: my surgeon told me then, that I would NOT have hot flashes; that those were...?...what? Did you guess? 'ALL IN MY HEAD'!) No, they weren't; they too were real.

I am basically a truthful person. I have NO REASON to lie about WHAT I FEEL to anyone. It is our WESTERN society and the one-size-fits-all attempt at Healthcare that HURTS people like us! We don't FIT the 'normal'. I am very hyper-sensitive to medications, I am tired all the time, I can't stand for long periods of time. But the bottom line is: I am only 50 years old! I AM NOT READY TO GIVE UP ON LIFE! My MIND works just fine! Why is MOST of the medical community so ready to dismiss me? It is very unfair! I am not depressed, and I do NOT NEED ANYBODY TO TELL ME what I feel! I am in my body and I've lived here, ALL ALONE, since 1957.

Yes, doctors have more education than I do, in medicine. I hold a Master's degree in Educ., thank you very much! And yet, in their eyes, I'm 'stupid.' I couldn't possibly know what's going on inside MY OWN BODY! Because they are the doctor, and I am not! Right? Wrong! And with that I am finished playing THEIR game.

I had to give up a career in Teaching due to muscle pain and fatigue! Very REAL pain. I wonder how Dr. Jane Doe or Dr. John Doe would FEEL after all that money, and all that time, spent on school and then ....POOF! Their dreams were shot to pieces? Do you think perhaps they might feel a little bit....um....Depressed? Frustrated? OR IS IT ALL IN THEIR HEAD???? I HOPE some of you can relate to this and will share your stories with me. Don't give up!

And don't 'buy into' something that isn't true. If you feel TIRED, then YOU feel tired. YOU KNOW how you feel. And if your muscles ache, then your muscles ache! May God bless you all. Hang in there!

I am so sorry you have had to go through all this, most of us have had the same issues. We have just recently gotten the doctors to believe us and gotten the meds that are helping us. This has been a very long road for all of us, but for some longer. We have all hung on and traveled and not given up. I am lucky because my doctor is willing to learn, he has been a god send to me.

Welcome to this site, everyone here is great. You can ask questions, you rant, or cry. We are all here for you for what ever you need. You can always PM me or anyone else here.

Hi sschmidtt, Welcome to our fibro family. Alot of people come here to rant, rave, get support, give support, laugh, cry, vent and almost anything that you need to do. Everyone in the forums are just great all around people willing to listen and help you out whenever you need it.

I've never been told that "it's all in your head" I've always been told, since the onset of perimenopause and then menopause and now post menopause that "awwwwwww you're depressed" Here's some Cymbalta.

I'll help with hot flashes. I never got any of it filled except the Lexapro. I got the Lexapro filled because I had a heart attack and my mood swings and emotions were everywhere. My first appointment after the heart attack went as follows. Walked up to the nurses office with a smile on my face. She said Hi name and birthdate? I opened my mouth and tears started to flow. I kept saying, I had a , I had a, I had a, and then I cried like Lucille Ball on I love Lucy. She handed me a kleenex box and my friend that came with me gave her all the information needed.

My Rheumy never said it's all in your head. I went to her because we thought I had RA. She came into the room and told me good news. you don't have RA, you have Osteoarthritis of the hands and feet and fibro, Here's some lyrica, call me for an appointment if you need any help.

My jaw dropped to the floor cause I didn't know what fibromyalgia was.

I learned all that I need and am still learning from the good people here.

Hi sschmitt. I feel your pain (along with my own) because you were so eloquent in saying how and what you feel.

I haven't "techinically" had a doctor say it was all in my head, but I have had them look at me like "Yeah, right".

You're absolutely right in your analogy of men not knowing the pain of childbirth and doctors not knowing the pain of fibro.

It is up to us, so much of the time, to educate our own doctors. Who's paying us the big bucks? We're the ones suffereing for this knowledge. It would be nice if a few more of them took the time to listen to us and to MAKE time to learn.

Starr, Yes! Your comment about the 'big bucks' how true. Sometimes I get so frustrated and MAD. I worked myself soooo hard (too hard) to earn my Teaching credentials (going back for a 2nd degree, that is). Partly to make my Mom proud and partly to become a teacher like my sisters. BOTTOM LINE: I had always been 'the sick one' in my family. And this turned out badly for me: I developed full-blown C.F.S. (and now Fibro.) and here in central Ohio there just aren't that many people to help. I was diagnosed at a FIBRO & FATIGUE CENTER in Cleveland (private place). What about you? Tell me more. --Shan

It is my opinion and only my opinion that physicians cannot deal with fibromyalgia and the pain it causes because they have been taught to heal. Fibro has no cure and the pain is very subjective and difficult to treat. Most of the time, physicians are able to pin-point a dx and develop a plan of care for that patient. They can develop many plans of care for the fibro patient or chronic pain pt. but they do not usually work. I feel those who care feel inadequate, and those who do not believe feel angry that we are taking up so much of their time. I too have feel I have been treated and dismissed because none of the thing we tried brought me any relief. I am sorry that I am still in pain, but there is no need to lie when the pain is so visible in my expression. When this happens, I ask straight up and directly. Do you not want to see me anymore? Do you think that this is manufactured by my depression or anxiety? I can tell you one thing. I was not depressed until after I had the fibro and the pain. Why would I have been depressed. I had a great job. I made alot of money. I had no problems at home. Even my counselor has started seeing me once every two weeks. Partially to help me out because of the co-pay and secondly because we have reached a standstill. Well, of course we are at a standstill. He is supposed to teach me to deal with my depression. I'm losing my home. I have not where to go. I am behind on all of my bills. I cannot afford my meds. There is no pill for that. Maybe I do act a little odd when I come for appointments. I take 13 medications a day. These include 900mg of a seizure drug, 500mg of lyrica, 125mg of another seizure drug, a long term muscle relaxer, a drug for depression and pain meds. I have had doctors tell me that they would not be able to get out of bed if they would take these meds, yet I am supposed to not only function, but act like the happy little pain free patient they feel I should be. I don't think so. I would like them to trade places with one of us for a day. Take our meds, deal with our pain and of course go to work, do their chores around the house and of course BE HAPPY. Otherwise they can never understand how it is to be us. I think I just rambled on and on to say that some doctors are just inconsiderate, obnoxious people that are looking for the fast fix. Boy do I wish there was one.

I dont get the answers I want when I go to the dr. I agree with Sandi, if they dont know how to cure it, they are at a loss with it. Some drs still dont take fibro seriously. I will admit for years, I didnt even put it down when going to a new dr that I even had it, and I was diagnosed with it over 20 yrs ago! When I finally started saying I had it, some drs were ok with it, some rolled eyes.

I honestly have to say I have other medical issues much worse than my fibro and I know from having it so long that there is not much that helps me. I am getting worse with it as I age.

And yes some drs are just inconsiderate and obnoxious.

Sorry you have OTHER issues, too, Mamanordy.! I found this site through a friend of a friend. It just feels good to actually READ that others have experienced all of this too! Believe me I've met MORE than my 'share' of the inconsiderate and obnoxious doctors. I would have been fired if I told the truth, the whole truth and nothing but the truth in my profession as a teacher. I couldn't tell parents, 'Well your kid just isn't very smart; he will never read corretly and well, there isn't much hope....now don't bother me.' AND yet doctors are allowed to tell us ANYTHING! Say it's in my head, say I need 'a glass of wine with dinner'. Come on! How unprofessional can you get! There are dozens who don't believe in Fibor. AND if they do, they immediately prescribe Lyrica (which I tried and cannot take due to SEVERE side effects) and then they act as though, once again, IT's ALL YOUR PROBLEM that you cannot tolerate the medication! No kidding! HYPER-sensitivity is another facet to many auto-immune illnesses. I am just SOUNDING OFF HERE! Thanks to any and all who hear and reply. I applaud youk, Mama and ALL OF YOU for telling it like it is! I intend to SHOUT it from the mountaintops. IT IS REAL. The pain is REAL. The fatigue is REAL.

Every time I go to the Dr. I feel like I am treated like some bored housewife with nothing better to do than go down and waste the good Dr.'s valuable time. Like my time is worth nothing. When I get the urge to make a Dr's appointment I think of how little they have helped me in the past, and how quick they are with the little Rx pad, even though I am Med intolerant. I suppose its not their fault after all they are Doctors of Medicine, it is what they know. Still after eight years of school you would think they would be a little smarter. They must not give classes in bedside manner in those Med schools.

What really gripes me is that my company and I pay hundred$ every month for my health care premium, which is pretty much useless to me because I cannot take drugs. That however is probably another discussion. PS I got the glass of wine Rx years ago as well, but I still have FM.

Hi janew15. I am Brand new here as of yesterday. Already I have gotten some good feedback. And now I am replying To you!

Oh GREAT, you got the same 'glass of wine' advice. (The jerks!) Another lady I know (we met at the FIBRO & FATIGUE CTR in Cleveland, Ohio), was told that she was a 'bored' little housewife and just needed to 'get a life.' She was simply 'bored'. I would have been livid! What gives these doctors the 'right' to say these things to us and treat us this way? Or should I say MIStreat. I have begun to see a NATUROPATHIC doctor. No he didn't go to med. school but he knows a lot about herbs and supplements. LIKE YOU, I did the Western Med. doctor thing for years and years and years. And spent $$$ on many meds. Like you, I am very medicine intolerant (that was something in and of itself only one doctor has been understanding about and that's because his own MOTHER was intolerant of meds.!!!). Mostly they do pull out the Rx pad as you say. That is WESTERN med. in a nutshell. I am nearly 51 years old and I guess I am finally on the doorstep of understanding. THAT IS JUST HOW IT IS! Same here, we pay lots and lots for medical care and now I have to pay out of my pocket for the care, the only care that is helping me! That really 'gripes' me too. And I had been able to receive medical massages at the O.S.U. CIM center (center for integrated med.) but now that my spouse is retired and I am working less (DUE TO the ILLNESS), I cannot go to the CIM center anymore. Go figure?! I'm sicker and working less and they take away one of the procedures that DID help the fibro. I keep praying for some kind of Fairy Dust to be sprinkled on the new HealthCare of the future! Take care. Write back! --sschmitt