Those of us who suffer from Fibromyalgia (FM) get a lot of grief. Not just chronic pain, of which we get a lot, but grief, from uninformed people. I have Fibromyalgia and Hashimoto’s Thyroiditis, an autoimmune disease also known as Connective Tissue Disorder. I, like so many other Fibromyalgia patients also suffer from Fibromyalgia Fog, better known to the in-crowd as Fibro Fog. We begin a sentence and then forget what we want to say. We go from room to room looking for…..what? We forgot. We start again. My children roll their eyes when they claim “I just told you that story” because they have and it sounds new to me. They could probably tell me the same story tomorrow and who knows if I will recognize the story or shake my head in new wonder. My sister sometimes complains that “you told me that.” I’m sorry, I believe you.” It may be hard for you to keep quiet once in a while and just let it slide but it is also hard not to take it personally and get your feelings hurt too. It’s not something we have control over, like muscle pain or stiff joints.
Apparently “Doctors” agree we “feel the pain” but the cause itself has people stressing out and arguing. Isn’t it just a total bitch that there are still people out there that think we are all whiney, crazy, uninformed, stressed out crybabies with the need to please? Of course, they point out, we are mostly all women, not all, but mostly. Ignorant Doctors: be skeptical if you want to but stop judging us and read the NEW research, all of it.
I was diagnosed nearly five years ago. After a routine check-up by my internist, that had my thyroid levels completely out of whack and my massive Vitamin D deficiency, she shrugged her shoulders. “I feel like I have the flu, without the fever” I would cry but she didn’t listen to me. My internist examined me and told me “there was nothing she could do,” and she clicked her designer high-heeled shoes and tap-tap-tap, left the room abruptly. She left me alone, sobbing on the exam table, unable to get up.
Since then I have seen Rheumatologists who do believe that Fibromyalgia is a real disease and that it is indeed painful. I now go to a Rheumatologist who is even “Fibro Approved” which means he is known for his sensitivity to both our illness and our feelings. The very fact that he is kind and soft-spoken is a pleasure, he even returns calls promptly and is not overly aggressive to try new things, but is patient to see how I am reacting to one drug, perhaps changing the dosage, not the drug. My Rheumatologist before him answered by-email only and said sternly “Fibromyalgia is a lazy diagnosis” and barked at me to start taking strong immunosuppressant drugs, one after another. Each drug had horrific side effects that left me unable to leave my house for two months.
If I could, I would only go to a Rheumatologist who actually HAS Fibromyalgia, for the very same reason I always chose a woman to be my Gynecologist and Obstetrician. It’s nice to have familiarity, empathy and understanding. Imagine this, if all the men who worked in the financial area were stricken with Fibromyalgia, a fairly debilitating disease, would it be a more credible illness to the naysayers? Wouldn’t there be a sudden outcry for immediate research, more funding demanded, results and ultimately a complete cure? Would you still be saying that they were overstressed worry-warts? I think not. If male business executives got Fibromyalgia, stocks for Savella, Cymbalta and Lyrica would go through the roof. Why are there still people thinking that men are more credible than women? Look at all the research for heart disease for men and very little, if any, for women? Women get heart attacks too and the symptoms are very different but we don’t hear a lot about that either.
I don’t wish this illness on an enemy much less a friend or someone I admire greatly. I just would feel so much better if we had a famous spokesperson with Fibromyalgia to champion our cause. I mean that sincerely. Is there any celebrity in the world that has the same symptoms and wants to represent us? You would help hundreds of thousands of people all over the world. Believe me, I LOVE and admire Oprah and don’t wish Fibromyalgia on her but IF she did have it, (or any high-profile celebrity: Ellen Degeneres, Dr. Oz, Meredith Viera, Barbara Walters, David Letterman, Conan O’Brien…) wouldn’t the world sit up and listen more carefully and intensify the search for a cure? Try calling Oprah a whining crybaby. You couldn’t and you wouldn’t even dare. Maybe there will be a time when someone champions our cause, our invisible illness. In the meantime, wouldn’t it be something if we heard: “Next On Oprah, My Struggle With Fibromyalgia.” Maybe then we would get the understanding, empathy and research we so desperately need.
I am a fighter of polymiositis, vitiligo, myasthenia gravis, and characteristics of fibromyalgia! I feel support comes from strength and faith! I am here for anyone that would like to talk;)
LikeLike
I have characteristics of fibromyalgia. Sometimes I sleep sitting up, or walk around the house without a shirt on as long as I can because it hurts to touch!!
But one thing I think about is how to keep strength and happiness with the positive things in my life!! That keeps me feeling better and helps me fight through all the different trials and tribulations put in front of me!!
LikeLike
Hey I just discovered 2 celebs with it! 🙂 One is the actress who plays Stephanie in the Bold and the Beautiful (can’t remember her name, I think it’s Susan something) and here is a link to FMAware website, there is apparently now an official spokesperson for us!
http://www.fmaware.org/site/News2?page=NewsArticle&id=6261
LikeLike
hey, you rock. thanks for sending that. i will let all my fibro friends know. she’s not Oprah but she’s someone!!! thanks.
LikeLike
Also I just read that Sinead O’Connor, the beautiful Irish singer retired because she has fibro too! She just couldn’t cope with it all and the fatigue. Very sad, cos she has such a beautiful voice!
LikeLike
thanks Brenda, I actually got a note from one of my readers that there is NOW an official spokesperson for Fibromyalgia. She is the wife of some ambassador I think. Hey, it’s not Oprah but it is SOMEONE standing up for us. YEAH!
LikeLike
Yeah it was in my original post .. the link I posted at the bottom of my message 🙂 xx
LikeLike
thanks, I really did know that (Fibro Fog). Sorry. I also got another e-mail from a guy who sent it too. Happy Weekend.
LikeLike
Martha Beck, a columnist for Oprah, has fibro. Not exactly big name…but if some highly successful person had fibromyalgia and could still function and have a career, I’d feel like everybody would be looking at me and asking “what’s your problem?”
Here’s an article from Psychology Today (of all places) on Martha: http://www.psychologytoday.com/blog/brainstorm/200902/martha-becks-fight-against-fibromyalgia
LikeLike
LOVE THAT!!!!! all these overachievers!
LikeLike
Great post great idea!
LikeLike
I agree, it would be great if all rheumys had fibro themselves (or someone in their family did) as the level of understanding and compassion couldn’t help but rise. (Like you, I don’t wish it on anyone, of course!)
The medical and pharma worlds still look to men for the “big” picture, and tailor drugs to male health issues. It took a long time before some female only cancers were given the notice they deserved to help raise funds for research, support programs, preventive education.
My primary care physican when to a lecture on fibro myalgia with a doubting doctor friend — the “fibro is a lazy diagnosis; fibro doesn’t exist; etc. type” After listening to a rheumy who speciallized in fibro, the doubting doctor said, “Maybe there is something to this fibromyaligia thing. I think I’ll look over some of my patients’ files.” (I’ve probably told this story before; forever for my repetition.)
So, here’s to finding a celebrity spokesperson for fibro; perhaps then the other thousands upon thousands of voices would be heard.
Great post! Great idea!
LikeLike