Surviving a body falling to pieces

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It’s really tough when every time you go to the doctors and they find yet another thing wrong with you.  I saw my rheumatologist last week and I was praying that he would find something wrong with me that could actually be cured.  I was quite disappointed when he said no, x-rays and bloods look good, you definitely have fibromyalgia.  Well that sucks because fibromyalgia can’t be cured and I’m totally over having incurable illnesses!

I tested positive for the HLA-B27 gene so I was surprised when nothing showed up, particularly as I have been suffering with chronic scleritis (an auto-immune illness) for the last four months.  I have had intraocular steroid injections (Ouchies!), steroid drops and prednisone tablets.  Every time I try to wean off of the pills the scleritis flares right back up again.  Scleritis is the most painful eye condition I have ever experienced.  Think red hot daggers being stabbed into your eye and you would be pretty close to the pain levels I have been experiencing.

The prednisone has been nasty, weight gain, headaches, hot flushes etc.  The list of symptoms goes on so I can’t wait to get off of it.

Last week I was put on a drug called Methotrexate, a very strong med that is taken once a week.  It kind of dampens down the immune system so that healthy cells don’t get attacked.  It is used to treat rheumatoid arthritis and other inflammatory conditions, and in much larger doses is it’s a chemotherapy drug for cancer.

I was reading up on Methotrexate and it is a really scary drug, plenty of nasty side effects and horror stories of people dying because they misunderstood the instructions and took the pills every day instead of every week.   Well to me it was a no brainer, after being in so much pain for 4 months I had to give this a go.  One pill and a few hours later my eyes are so much better, absolutely no pain at all.  Still a little red at times but no pain – amazing!

I was kind of hoping for a small miracle in that it would help with the fibro pain.  No such luck, fibromyalgia isn’t an inflammatory illness so the Methotrexate hasn’t had any effect.  Back to the hot water bottles, Endone and Panadol!

I’m seeing my eye doctor tomorrow, the weekly drill is to sit for a couple of hours waiting, watching my appointment time come and go whilst they see to emergencies and surgical inpatients and then pay an outrageous amount for parking. Fingers crossed my eyes stay well and hopefully tomorrow I can finally come off of the prednisone, and not have to go back for a few weeks.

I really need to lose this bloated fat feeling I have had since I have been on the Prednisone.  It makes me feel sluggish and more tired than usual.  That plus the fibromyalgia fatigue and I have practically been a zombie for months.

Life sure is a roller coaster!

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2 responses »

  1. Yep can relate but in different circumstances, my body doesn’t do anything in halves so it’s like you battling several things at the same time. Life sure is roller coaster never a dull moment but for all the wrong reasons lol.

    Like

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