Calling Myself A Complete Idiot Would Be A Supreme Compliment

Stir Crazy 3 (Photo credit: The Michael)

A few weeks ago I posted a very disturbing blog post that scared me and some of my friends and readers. It was called “Worried Sick: One Crazy Ass Blog” and people I didn’t even know got worried about me. Days later and a tears shed, it prompted me to write a gushing thank you post and sincere apology.

That said, I now believe I am a stupid and utter asshole, although I can’t say for sure. However, I realized today that I think I did something totally silly and possibly quite dangerous. In my “fibro-haze/know it all “frame of mind, I realized that I had stopped taking one of my Fibromyalgia drugs, Topomax (used also for epilepsy and a variety of other illnesses) cold turkey. What makes it even more insane is that I had checked this out once before and knew to taper it. My excuse? I forgot. Reason? Fibro Fog Forgetfulness. We just can’t win, can we?

I researched it today and found out that yes, stopping the medicine without tapering it can produce some significant and intolerable symptoms including severe anxiety, discomfort AND tingling of the hands and feet etc. I’m just lucky I didn’t end up in the Emergency Room (although that was listed too.) However, I was curled up in the fetal position in bed feeling a bit suicidal.

I won’t ever be that cavalier again. I think what happens with those of us with chronic pain is that we take so many different medications (none that seem to help us at all) that we figure stopping one won’t make a bit of difference. Wrong.

I was totally out of my mind to have not thought it through in my search to lower the amount of pills I was taking. Again, when they say “consult your physician” as much as we may hate to, understandably so, at least we should call our local pharmacist. Besides, at least we know their number by heart.

PAIN 11/11/11

I AM convinced that menopause was the catalyst for my getting a thyroid disorder, actually an auto-immune thyroid disorder called Hashimoto’s Thyroiditis and Fibromyalgia which crept in….no, more like, crashed into my body right after menopause and never left. It also changed me from a happy person to a somewhat content person. I am more anxious, I have more fear. If PMS was a wading pool, menopause for me, was like a tsunami.

I had been to doctor after doctor, half of them not having a clue what was wrong with me (including my beloved internist who walked out of the examining room in frustration and left me crying inside, alone.) There was a rheumatologist who said I had “scoliosis” and that my auto-immune disease of the thyroid would leave me “wide open for other auto-immune diseases.” Thanks, really helpful and informative not to mention it scared me half to death. I had another rheumatologist who put me on cymbalta and when it did not help said she could do no more and a maniac rheumatologist who put me on various, toxic medicines that are generally given ONLY to transplant patients so that they don’t reject a new organ. He also let me stay on one particularly noxious medicine that gave me gastrointestinal problems so badly I couldn’t leave my bathroom for a month. When I called him after a month and told him what was happening, he said just “give it another month.” A month later, weak and dehydrated I had an office appointment and he said “my bad, that was my mistake.” YOU THINK?

It’s hard to remember “Before” menopause since I am convinced that menopause and fibromyalgia both robbed me of my memory. What was I saying? Why did I come up here? What did I want to remember? Frankly, its terrifying. I can remember verbatim the words spoken in my husband’s and my first fight but what I did yesterday? Not easy at all. It also robbed me of all the energy I ever had, poured it out of my body with an invisible pump and threw it in a large body of water far away from here. It could be fueling the energy of a little known country for all that I know…..

I consider myself a sick woman now, not a healthy one. My Fibromyalgia flare-ups have been so long and pronounced it’s like they are my new constant. I don’t remember when I didn’t ache in agony. Movement of every kind makes me groan out loud. I’m not asking for sympathy or even help, I am hoping for understanding. Please, just remember, I HURT all the time, whether you believe in this chronic pain disease or not. It is my unhappy life, not yours; do not judge. I don’t complain to you, so please don’t offer suggestions. If I want your opinion, truly, I will ask for it. You have NO idea what I go through so don’t even think about saying “you know how I feel.” Trust me, you don’t.

Help Wanted: Celebrity Spokesperson – Fibromyalgia

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.