Fibromyalgia? Auto-Immune Disease? Chronic Pain?

Oh me, Oh my. All of the above and then some. Diagnoses dished out like those colorful candy buttons on a long roll of white paper. Whatever Dr. I see gives me another diagnosis. I’ve taken Cymbalta when the Dr. thought I had Fibromyalgia from the tender points she pushed on my body. Now, that technique is not valid for diagnosing the illness anymore.  After that I went to an auto- immune specialist for the Hashimoto’s Thyroiditis and the new inflammatory disease he discovered.”You are a very sick woman” he droned.  I’ve been on Methotrexate, I’ve had Epiglottis, twice (severe throat pain is an understatement), and I fervently pray I never, ever get it again. I’ve been on Prednisone half a dozen times, Vitamin D, Synthroid, Plaquannel, Trazadone and more….

I was put on Cellcept (“the medicine that has the least amount of side effects”) to replace the Methotrexate (that landed me in the hospital) and after a month I couldn’t stand the extreme intestinal side effects (“only 8 percent of the people get it “). Lucky me!! I wrote to my Dr. and he said “give it another month” because I don’t think he believed how bad the side effects from this drug really were. I begged for some sort of stomach aid but he refused. “Give it another month,” he intoned flatly. End of discussion.

I’ve been off Cellcept for a week and a half and I am still suffering from the same severe intestinal side effects I ‘ve been having for two months. I wrote the good Dr. and told him I was coming in (as in squeeze me in) because the side effects were so overwhelming I couldn’t leave my house. “Oh, it must have been the Cellcept” he said.  (ya think?) My bad. He took me off the offending drug and promised that in 2-3 days I would be much better and all the symptoms would disappear. It’s been 6 days and counting…..

He did prescribe medicine to mask the symptoms and  when I take the meds they work, but alas, when they wear off, it’s really bad news. I can’t live like this. He threw around words like endoscopy, I added silently colonoscopy, what else? I see a trip to my Gastroenterologist in my very near future.

It’s been three years now since I started on this bumpy ride of chronic illness and I’m not much closer to a cure (I know there is NO cure), resolution.  I swing from wanting to get off all medication and trying to find the right one (the third’s the charm, right?).  I’m waiting a few more days and then I will, once again,  attempt to repair my own physically fragile life, to ask more questions and demand answers. Nicely.

Any suggestions? Any genius Doctors?  If I was incredibly wealthy I would head to the Mayo clinic but I don’t have that kind of money. Any rich donors? (just kidding).  I will also go to the natural pharmacist and discuss with him what might help instead of all these toxic medications I’ve been on. I know though, that genius Guru Dr. has another medication in mind for me so that’s in store for me soon, but not quite yet.

I’m done, pity hour (or 15 minutes) are over. I’m not going to think about it until next week, when I CAN TRY and do something about it. Have to go now. Guess where.

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4 thoughts on “Fibromyalgia? Auto-Immune Disease? Chronic Pain?

  1. I read your blog so I don’t have to keep up with my own. You say just about everything that I am going through…and quite elegantly at times. I, too, have Hashimoto’s and other autoimmune diseases like Psoriatic Arthritis. I, too, have had to take methotrexate, prednisone, etc. and feel frustrated with the reality that there is no better options for treatment. Raising teenagers, trying to keep going, at times I try holding down a job or taking university classes as well but it sometimes feels like I may not be able to get up tomorrow or I may not want to. I am confused about symptoms that are not found in the descriptions under my disease categories online and my Endochrinlogist and Rheumatologist seem to just think what I say as irrelevant if it is not something found in “the books”… I have often felt somewhat isolated in this.

    My point wasn’t to wallow… but to say Thanks… for blogging… about both good days and bad days… I am glad you have good days but it is the days that are not so good which you still write about that keeps me from feeling so alone in this. It helps to know that there are others making it in spite of it all…

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    • please stay in touch with me. i don’t know anyone that has Hashimoto’s Thyroiditis and other things as well as I do. thank you for writing about my blog, I’m so happy to reach even one person. you are not wallowing, you are living life as we know it. you can write me here or on my email. Laurie

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  2. I do have advice. Your doctor sounds like he’s not even listening to you. Book an appointment with a naturopath and get a second opinion and some alternative options. Western medicine is not well-equipped to deal with autoimmune disease but natural and Eastern is. I wish you the best.

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