Hashimoto’s Thyroiditis and Fibromyalgia # 2

1/11/10

UGH. DOUBLE UGH.

As some of you know, I have Hashimoto’s Thyroiditis which even though it sounds like a special on a dinner menu is an auto immune disease. Before being treated for that, I was formerly diagnosed with  Fibromyalgia.   My Endocrinologist gave me Synthroid when, after menopause, I was diagnosed with an underactive thyroid.   Synthroid brought my thyroid levels back to a normal range but I still felt absolutely horrible.   Months and months later I found my way to a Rheumatologist who diagnosed me with Fibromyalgia and prescribed Cymbalta. I still felt horrible and about a year later I found my guru Dr. who is the Head of Auto Immune Diseases and Rheumatology at a NY hospital.  I think I might be in love with him… he’s a genius.

I  take Plaquannel every day.  And folic acid.  Oh, and methotrexate with a high dose of Vitamin D, twice a week. It pretty much takes me out of commission 4 days of the week  because my stomach rages against the methotrexate for two days each time I take it.  I take Cymbalta for the Fibromyalgia (which I may or may not have) and an anti-depressant used for anxiety issues. I am my own chemical compound. I was also on Prednisone which at high doses makes you feel incredible, high, and young and when you lower it significantly and slowly, you feel like you are in the movie “Cocoon” where the elderly first are given a special potion to feel young and fabulous and later on it goes away and they feel old and horrible again. Heartbreaking but true.  I’m not proud of all the medications I have to take but I am not ashamed either.

According to my guru Dr. in the city “Fibromyalgia is a lazy diagnosis.”  His theory is that anyone with an auto-immune disease like mine will feel achy, fatigued and have muscle pain.  To me, the patient, I don’t care what you call it, as long as you can help me feel better.

It took two complete years to even get on the right track of my initial diagnosis and while I think I am on the right track, it doesn’t mean that I feel swell all the time. It means I feel better and have learned to handle and predict certain situations. I am also 53 and not 23 and that does make a significant difference. Somewhere in this medical mystery of mine, I have had many broken  bones, sprains and torn ligaments;  I think there is a connection with the Hashimoto’s but not definitively.  All I know is that  it hurts and takes a very long time to heal.

My experience with the above urges me to say the following: If you feel that something is wrong, believe it. My internist didn’t believe me at all and actually left the office in a huff when I started crying from all the pain. Go to different doctors for their opinions. Don’t be scared that Dr. Jones will be insulted if you see Dr. Stevens. Nobody cares. Hardest but most important of all, believe that you will get better! You may not be perfect but you will be better and you do need patience for that.  Keep trying and keep believing that you will not always feel this bad. Believe me, I am still learning  and relearning that lesson every single day.

Good Luck!

9 thoughts on “Hashimoto’s Thyroiditis and Fibromyalgia # 2

    • Phylor,you need to find someone who is knowledgable about trigeminal neuralgia. It sounds to me like you are describing pain I am all too familiar with! You can look it up on the web and see if it fits your descriptions too. Mine is treated with medication and once it is quieted I go off it.

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  1. TMJ was ruled out early on, and then again later when I visited a super-fancy dentist (forget the technical term).
    Been doing research (yet again), and apparently my dental pain is known as atypical odontalgia — an often constant toothache without any cause for a toothache! So, I have atypical facial pain and atypical odontalgia — in other words, you hurt and we don’t know why! Oh well, guess I can’t join any diagnosed syndrome/condition club just yet.

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  2. Some one suggested last night that my neck and facial problems could be a form of fibromyalgia. But I thought you needed to have trigger spots and pain throughout your body. I never thought of my chronic pain as fitting into a diagnosis such as fibromyalgia. Sounds more helpful to be part of a community rather than “atypical chronic facial pain and neck spasms” which seem so singular and “lonely.” I don’t know if this makes sense — it’s something I need to work out, I guess.

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    • trigger poiints definitely indicate fibromyalgia. not sure if you have that. i have TMJ (stands for something long) and I get sharp jaw/neck/head pain from it. look that up. it sounds like u maiy have that. wish i could tell u there’s a cure but there isn’t. i can’t eat corn on the cob or apples, need to cut them up. i have a tiny mouth so the dentist needs to use baby x-rays. it’s all related. keep me posted.

      Laurie

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  3. Pingback: Neuragen Experiment: Day 5 observations « Phylor's Blog

  4. Given your age, auto-immune issues, medications, and broken bones, have you had a dexa bone scan for osteoporosis? I had osteopenia (pre-osterporosis) by 47, and osteroporsis followed quickly. I’m a faller, but until this summer only suffered scrapes, bruises and sprains. Broken glasses but no broken bones. Due to other health issues, I couldn’t take most osteroporsis medications. Found dark chocolate calcium discs (trouble swallowing the large calcium tablets).Two years ago, started on Evista to try and slow down the bone loss. In July, I fell again, but this time shattered my right wrist.
    I hate to add yet another health concern/issue, but you might want to consider having your bone density tested.
    Your very right about finding a doctor who is caring, concerned, and above all else believes you. I have a wonderful primary care physician who listens, understands, never doubts what I say. I don’t know where I’d be without this doctor!
    Hang in there — knowing what you’re up against and owning it rather than it owning you is one of the keys to being a survivor.

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