Autoimmune Thyroid Disease

An Unfortunate and Lengthy Adventure in Misdiagnosis

The fibromyalgia years

with 6 comments

When I was younger my parents used to take us on holidays in the caravan. We often went to Wales, as my granddad is Welsh.

This particular year, I think I was thirteen. My sister was eight. We all piled in the caravan, dogs and all, and off we went to Wales. We had a good holiday, enjoyed the sun, went to the beach, played in the stream and walked in the pine forest woods surrounding the campsite.

Almost immediately that we got home, we got sick. We came down with a terrible stomach bug and had sickness and diarrhoea for several days. I don’t remember much about this, but I remember being very ill, and my Dad describes it as “very nasty”.

We felt a bit washed out afterwards. A month later, we were back at school for the Autumn term, and I remember I wasn’t doing well. I just felt very tired all of the time. I remember walking into the kitchen and catching a stray comment from my Mum to my Dad. “Do you know, I just don’t feel well.”

“I don’t feel right either,” I said. “I feel really tired all the time and I have these aches in my muscles like I’ve overdone it in the gym, and these weird sensitive patches of skin that feel like I’ve been bruised, even though there’s nothing there.” I traced a patch on the back of my arm that tingled with pain whenever it was touched, even with the faintest brush of clothing.

My Mum and Dad looked at me in astonishment. “I have those,” my Mum said. My Dad agreed. Apparently my sister had also been complaining of tiredness.

In the weeks that followed, we seemed to get worse instead of better. My muscles seemed to ache all the time, as if I had the flu. I just wanted to sleep. I felt short of breath all the time, but I didn’t think it was asthma. Everyone felt the same. I remember going to my Mum and complaining that I was so tired I actually felt weak and dizzy and short of breath when I raised my hands above my head to brush my hair. Thus began a series of trips to the doctors.

The doctors were quite understanding. We had known our doctor for years and he had even been there during my Mum’s pregnancy with my younger sister. Our doctor started to do a series of blood tests on us, looking for infectious diseases. We were all tested for Lyme disease and came back negative. The only test of note that came back positive was my Dad’s test for Yersinia. We kids were spared many of these blood tests, as there was no point repeating them on us all.

We kept having to have time off school because we felt rotten. I remember having time off, then going back, and a girl in my class saying there was a rumour that I had M.E. As far as I knew, M.E. was an autoimmune disease, something people called “Yuppie Flu.” I laughed and told her not to be ridiculous.

Eventually the doctors weren’t sure what else they could do, so they referred us on to the hospital. After more blood tests, appointments, interviews, examinations, and deeply unpleasant muscle biopsies for my parents, the consultants had no significant results to show us.

One final test was performed. We were all taken separately into an exam room, and a doctor pressed various points around our bodies. “Does it feel tender when I press here?” I remember the doctor. He was a big guy and I was scared of him, and he pressed very firmly. I said “ouch” a lot. It was tender everywhere he touched, mainly because he was pressing very firmly. I was less tender in some areas though. I remember him pressing an area around my collar bone and asking if it was tender. I said yes, even though it didn’t hurt as much as the other spots. “You’re tender here?” he asked in surprise. “A bit,” I think I replied. I was very confused throughout the whole process. I wasn’t sure what he was looking for. I had the persistent feeling that he thought I was faking.

Eventually the consultants had an answer: “You have M.E., or as we prefer to call it, fibromyalgia.”

My parents’ reaction was: “Huh?”

Then they said: “Your children, however, failed the tender point test, because they said they were tender all over. We think they’ve been psychologically damaged by your illness and they’re suffering from hypochondria. We want them to see a psychiatrist.”

My parents were absolutely terrified. They thought we were going to get put into care.

When my Mum told me this, I went into a meltdown. I’d been feeling so tired and achy and frustrated for so long, and now the doctors thought I was making it up! I shut myself into my room and screamed and shouted and refused to come out. I cried for hours. I refused to see a psychiatrist. I wasn’t mad.

My sister took the news better than me. She was a relatively compliant, upbeat child, and had remained cheerful throughout the whole process. The psychiatrist delved into my sister’s reasoning processes. After several weeks of seeing the psychiatrist, the psychiatrist sent her back to the doctors. “This child has nothing wrong with her mentally, she’s physically ill.”

The doctors revised their previous diagnosis.

And that was that. We had fibromyalgia. Not being believed to begin with left me with a deep scar. I’m very phobic about doctors. I’ve encountered several who have had strange reactions when I mention the dreaded “F” word. I have a deep anxiety and frustration that I am being written off as someone with a mental condition. I’ve always been a very rational and sensible person, someone who is very principled about telling the truth, someone who performs a great deal of introspection and self-examination. I know my own body. I’m not the kind of person who could ever be hypnotised, or who would be taken in by something like NAET or spiritual healing. I’m practically immune to the placebo and the nocebo effect, as I have demonstrated many times.

The doctors couldn’t really do anything about the fibromyalgia. Occasionally they would find some new advice to give us, like “exercise more”, which made us feel worse. They tried giving us sleeping pills because patients with fibromyalgia had “the wrong kind of sleep”. Needless to say, the sleeping pills didn’t work. I tried them and gave them up very very quickly because they made me sleep for 12 hours a day and wake up with dreadful hangovers. I felt like half of my brain had been shut down. My parents got very nervous when they realised the sleeping pills were also antidepressants, as they had encountered so many different reactions to the diagnosis that they no longer trusted anyone. Eventually my parents were written off and sent away with prescription strength ibuprofen tablets. I refused to take anything, because everything they gave us made me feel ill.

I believe that the combination of ibuprofen tablets and HRT was what gave my mother a brain aneurysm about ten years later. She is now permanently disabled and brain damaged.

There is a food element to this story. I remember that a few months before we went on that ill-fated holiday, we had been sitting around the dining table, and my Mum had been complaining yet again about how conservative mine and my sister’s food choices were. We ate very old fashioned meals, usually meat, potatoes, and a vegetable, or salads and egg and chips at the weekend. The veg was very old fashioned, like cauliflower, peas, or carrots. We didn’t even eat broccoli. We decided that we would branch out and start eating more “modern” and “interesting” foods, like homemade pizza, and spaghetti bolognaise. I really wonder how much this higher food chemical diet contributed to our overall feeling of unhealth.

After we fell ill with the stomach bug, my Mum didn’t have the strength or patience to cook everything from scratch, and we started eating more and more convenience foods. By the time we had been diagnosed, we were eating things like pre-prepared frozen pizzas from Iceland and tinned foods during some nights of the week. I’m sure this must have made things worse, because I know I’ve been at least mildly food chemical intolerant since childhood. I wonder how much it accounts for all of those “good days and bad days” we used to have.

I’ve had numerous health problems and relapses over the years, but after the age of about 23,  when the ear, nose and throat specialists at the hospital failed to give me any effective treatment for the chronic otis externa I developed, I pretty much gave up on doctors for good. I just stopped going. I realised they didn’t have the answers. My only encounter with a doctor after that point was when I went on the pill. The pill gave me deep vein thrombosis, and my trust hit an all time low.

The strange thing is, I’ve never really believed in fibromyalgia as a diagnosis. “Fibromyalgia” is just a term that means “you have these symptoms but we don’t know what’s wrong with you.” In my twenties, I managed to convince myself that everyone felt rough and tired a lot of the time, and this was just a part of getting older! There has to be a real, physical explanation for fibromyalgia. It isn’t a mental condition, it’s just a condition that doctors aren’t smart enough to understand.

I have no idea whether our thyroid function was ever tested.

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Written by alienrobotgirl

22 May, 2009 at 1:27 pm

Posted in Thyroid

6 Responses

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  1. In some ways, we have so very similar stories… My hospital visits literally make me shake with nerves, I am traumatised too. When I was investigated for coeliac, I was being forced into psychology and I was even tested for illegal drugs! This is why i’m not getting treated for bi-polar even though it seems to be getting out of my control, argh.

    elena

    piratehyde

    22 May, 2009 at 4:38 pm

  2. Oh my God, that’s awful Elena! Is this because of the IgA deficiency? Jees, what do you have to do to prove to doctors you’re ill?

    Too much reliance on faulty tests!

    I suppose doctors are like programmers. There are hundreds of bad programmers out there (I should know, I’ve seen enough of their code), and a small select few who are up to their jobs and rise to the top. It takes a while to sort the wheat from the chaff.

    The trouble is, naive users have no idea whether they’re getting the cowboys who scraped through at the bottom of their class, or the real deal.

    alienrobotgirl

    22 May, 2009 at 10:38 pm

  3. Hi Scarlet,

    What kind of antibiotic? Erythromycin, clindamycin, any other ~mycin? There are other reasons that this class of antibiotics can help people with fibromyalgia, without it being related to an infection.

    They are interesting in that they are leukotriene inhibitors and have the opposite effect on the body as NSAIDs and aspirin/salicylate. I know many people with fibromyalgia who are food chemical intolerant to salicylate in food. Possibly because they are hypothyroid? Just a thought. Look around my other blog posts and pages to fill in the gaps on this.

    alienrobotgirl

    23 May, 2009 at 1:52 am

  4. when ever i am on an antibiotic my fibro goes away. it always comes back after a week or two. they are doing studies that it is an infectection, unseen by tests. i have had this for 20 years but i didn’t know it. it’s worth looking into even if the doctors you have gone to in the past did not help.

    scarletohara09

    23 May, 2009 at 1:20 am

  5. This was way before coeliac was even on the table. After being through neurology and cardiology, I was left with “its bullying”. My mum wouldn’t stand for that! Coeliac was a complete guess by my GP because I didn’t have any classic symptoms apart from mild anaemia.

    piratehyde

    23 May, 2009 at 12:13 pm

  6. Wow – you’re lucky you have an astute GP then – or at least one willing to employ a scattergun approach! 🙂

    alienrobotgirl

    23 May, 2009 at 10:22 pm


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