Friday, January 28, 2011

Day 479

So I'm fatigued.  An overwhelming feeling like the life is being sucked out of me as I stand.  That brings with it a light head, a mild dizziness, brain fog.  I feel half drunk. As I am being sucked dry I feel the blood being taken from my limbs. I get a "zapping" feeling and a mild pins and needles. Peedles.  Actually no, not really peedles, more like a constriction feeling ... like I am wearing bandages. Kind of.  It is hard to explain.

I have fibromyalgia.

Or do I?

This all started happening at the end of 2006.  By February 2007 I was a mess.  Couldn't get through a day.  I spoke to Professor Google and he suggested I had Multiple Sclerosis. I believed him. All the symptoms were there.  So for three weeks I walked around with MS until I spoke to a real doctor who sent me to a Neurologist.  Why you send me to neurologist?  You're thinking MS aren't you?  Yes.

So I went to Neurologist who did loads of neurology type things. Tapped my knees, ran a key down my foot. Sent me for a MRI.  There is no scarring on the brain to suggest you have had MS episodes.  I believe you have fibroymalgia.

What the?!

So I went and got all the books and asked Professor Google again and found out about all things fibromyalgia.  It made sense. All the things I had complained of much of my life were listed.  So I went with the diagnosis and lived with it.  I had some concerns though.  The pain that people talk about, I don't seem to get.  Not in a major way.  Slight pains, but nothing huge.  Not worth complaining about. Mostly.  It also bothered me that the diagnosis was made so quickly.  Like I'd been labelled because it was the easy way out.  Anyway, I took the label just so I could put a name to it.

I wrote a blog entry on my personal not-for-public-eyes family blog.  It was dated October 24 2007.  I titled it "Fibromyalgia and Me".  I have copied it below.

I'll come back and talk more about it tomorrow. Why? Well because, it's about time I did.

Wednesday, October 24, 2007

Fibromyalgia and Me

According to the Wikipedia Fibromyalgia is a chronic syndromecharacterised by muscle, joint, or bone pain,fatigue, and a wide range of other symptoms. My symptoms include overwhelming fatigue, vertigo, brain fog, nausea, slight pins and needles particularly in hands, feet and legs, and some joint “discomfort”. It is not contagious, and apparently there is a theory that people with fibromyalgia may begenetically predisposed. It affects more women than men and is usually diagnosed in people between the ages of 20 and 50. The degree of symptoms can vary greatly from day to day with periods of severe worsening of symptoms or remission.

I was diagnosed earlier this year due to a severe period of fatigue, dizziness and the feeling of constriction in my arms and legs. At one point my legs collapsed as I tried to get to the bathroom in the middle of the night. It was all very scary, particularly when the doctors starting testing me for MS. Until my diagnosis I had never heard of fibromyalgia, nor had it occurred to me that the pain in my hands and fingers were associated to the other symptoms. I had assumed I had RSI. But now that I am aware I have also been advised that some of my other little annoyances, including heart-burn/reflux, are also associated with the condition. It’s all very interesting!
According to, these symptoms may be aggravated by stressanxietydepression, hormonal changes, cold environments as well as the change in weather. I relapse when I am pre-menstrual, and when the weather changes. It took me a while to work that out, but now that I realise that it becomes quite predictable! also advises that 50% of sufferers have multiple chemical sensitivities. I am not sure what they mean by the “multiple chemical sensitivities” but I do have major sensitivities to chemicals in foods (both added and natural) particularly amines, salicylates and MSG. The sensitivities contributed heavily to my years of migraine, and gave me problems with irritable bowel syndrome. Both are now under control with a strict diet.
Other symptoms that may accompany fibromyalgia are Raynaud's phenomenon (poor circulation to the hands or toes), tension headaches, migraine headaches, dizziness, tingling and numbness, an irritable bowel, muscle tremors, bladder spasms, and blurred vision. I have most of these at various stages.

Fibromyalgia can’t be fixed with medication, although most people are put on some form of anti-depressant to try and help with the fatigue and serotonin issues. I have dabbled in naturopathic remedies but the effects were minimal. I am still looking at vitamins and minerals as a way to relieve the fatigue and joint soreness. For the most part I am learning to manage the condition by remaining active, not letting it define me as a person and staying positive about my ability to function normally. I may not be as energetic as I was 18 months ago, but this is my new “normal” and I am living happily within my normality. I am still not 100% convinced that it is actually fibromyalgia that I have, because my pain is nowhere near that described by others with the condition, but just have a name to give my illness is reassuring and if I am re-diagnosed with something different later, then so-be-it.

There is a great website on fibromyalgia -


  1. I have FMS and it's hell. I went for years without a diagnosis, even got told by one doctor that I was making it all up and need psychiatric help... then one rhuematologist gave me the trigger point test (you need to have 13 of 18 points or something like that plus the other symptoms to get a FMS dx) and sure enough I had all 18.
    I'm now unmedicated because the painkillers made my insides unhappy to say the least, so I'm currently in nomans land.

    I'd be interested to see if your dx changes as more things are known about FMS and other conditions.

  2. I recently read about Fibromyalgia, i don't know how and where...

    Nonetheless, I am glad that you have been able to push it aside and continue with a positive attitude. It is so much better to have a name to a disease than not, i guess. All the best

  3. Funny, I have had similar symptoms. Though my fatigue is usually attributed to the fact I cannot sleep due to pain.

    I started with pins and needles feeling, but in my face. It progressed to areas of numbness and now I spend many days just in pain. We call mine "neuralgia" and we're hoping it's not the serious one, trigeminal neuralgia. Neuralgia is commonly treated with anti-convulsants.

    That said, in an effort to rule out everything that isn't the "bad" neuralgia, we have been looking into black mold toxicity which has many of the symptoms that present much like MS are actually a toxicity problem. Unfortunately, it's really hard to get that as a diagnosis.

    I wish you luck on your search as well as relief from your symptoms.

  4. Glowless: Wow. I didn't know about the indicator tests. That's interesting. I don't need painkillers but they have tried my on anti-depressants but they don't work for me ... although they did combat the fatigue ... they sent me hyper manic which wasn't a good thing either. I hope you get some relief soon ...

    Ratz: Thank you :)

    Draft Queen: That is really interesting! I was on anti-convulsants for a while to try and stop my vertigo but I went off them. I don't recall why .... I think I just decided to go without medication. Hmmm. Your comments are interesting and i will look into that a little further. Neuralgia isn't something that was ever mentioned to me. Makes me think though. I hope you get some concrete answers soon and that you too get some relief. Keep me posted :)

  5. Oh wow Leanne :( that is so horrible :( . I was diagnosed with FMS when I was in my early twenties as a last resort to explain chronic and frequent back pains which weren't helped by chiro or medications. I was put on a no caffeine, no sugar diet to try and help it and it helped alot. I know that I react to foods so it makes sense looking back now. Mine is just returning and is terrible just before I get my period and the first few days, so terrible that my back will go out completely :( . Having said that though last month was my first on AD's and no back problems so I am hoping that works for me. Please keep sharing about it whenever you feel the need, although I also understand the notion of not giving it space, that is how I am with my negatives, if I talk about them too much then they tend to multiply and grow :( . (sorry it took so long for me to come and read this, I somehow missed this post when you posted it :( )


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