So Have I Got Fibromyalgia Or What?

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For years I have been obsessing about fibromyalgia, buying every book I can get my hands on, reading every website on the subject and diarising every symptom.  Recent events have put my diagnosis in doubt.

Fibromyalgia isn’t an inflamatory syndrome so how come since I started taking Methotrexate which is widely used for inflamatory diseases such as rhumatoid arthritis my pain has completely gone?   Seriously I have had no pain at all for probably 6 weeks now and that is unheard of.   I have had daily wide spread pain for years and now I am totally pain free (apart from my eyes but thats a whole different issue).

I spoke to my GP on Friday and mentioned that I am pain free and the first words out of her mouth was, perhaps you dont have fibromyalgia after all.  Now that is the question I will be asking my rhumatologist at my next appointment in a couple of weeks.

So what do I know?  The main thing is  I am HLA-B27 positive which makes me predisposed to getting  auto-immune diseases such as certain types of arthritis and scleritis, hence the chronic eye problems.

I have mixed feelings about maybe not having fibro.   Fibromyalgia is no fun but it doesn’t damage your joints like arthritis can.  Arthritis can be such a destructive disease which can totally cripple you.   On the other side of the coin it would be good to have a disease that is actually recognised and accepted by everyone.  Some people still see fibromyalgia as something the doctor tells you that you have when they can’t find anything else wrong with you.

I think my next step is a consultation with Dr Google to compare my symptoms with different types of arthritis and other inflamatory diseases.  I want to arm myself with as much information that I can before I see my rhumatologist.    I know a diagnosis doesn’t really matter, the important thing is I am pain free but for some reason I really need to know whats wrong with me.  I need a name, I need to own it and understand what is going on in this crazy body of mine.

Ok so lets pretend for a moment that i’m still in horrible chronic pain, these are my symptoms and other illnesses: –

* hip & groin pain
* thigh pain
* upper arm & shoulder pain
* chronic headaches
* fatigue
* bipolar
* hypertension
* empty sella syndrome
* HLA-B27 positive
* keratoconus
* scleritis
* chronic kidney disease
* sensitivity to changes in weather
* very low pain threshold
* bad sleep with not feeling rested upon waking

Reckon thats probably the bulk of it.  Any thoughts or ideas anyone?

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2 responses »

  1. Are you still out there? Been at this for 17 years – so-called ‘ fibro and immune issues run hand in hand in my family – along with scoliosis of varying degrees. Hmmm – empty sella. Think and read about dural torque and the sphenoid cranial bone which has little holes for the optic nerves. Sound like your sphenoid may be torqued. Try to get to a traditionally trained osteopath – expert in craniosacral theory and practice. Also, Chinese medicine/ acupuncture. Big hugs. This is a crazy journey. Bet your family has wonderful gifts, too – in language, leadership, medicine/science. We live ‘the gift and the curse.’ Trying to understand this.

    Liked by 1 person

  2. Hi Nancy, thanks for your comments and thoughts. Very interesting re the sphenoid, will do some reading on it. Still no further forward in getting a diagnosis but “Fibro” pain is still good, sore scleritis
    eye not so good so still battling. Will get there ☺ Hope you are doing well.

    Like

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