Friday, 2 November 2012

So! What about me?

After visiting the doctor’s surgery complaining of feeling so desperately tired and having pain in my hips, groins, hands and elbows, the good doctor smiled and informed me that it was just wear and tear. I was only 50 then and with a few ibuprofen I carried on for the next couple of years wondering why this seemed to be getting so much worse.

So! As I had always been interested in alternative medicine I took fish oils and glucosamine and a good helping of vitamins (including plenty of iron) whoops! for my tiredness but things just went from bad to worse. Eventually, after feeling so unhappy with the doctor I decided to move to a new surgery and start again.

My new doctor sent me to see a specialist about my hips who diagnosed osteoarthritis, suggesting that I would first need my right hip replaced and then eventually the other. I was horrified as I felt, mentally, far too young to be suffering so much and so out of the blue.

My doctor gave me some other medication for the pain but all that seemed to do was increase my problem with constipation and make me even more tired. In all this time the pain was getting progressively worse and a plethora of other symptoms were now also occurring; my hair was thinning, my body hair was almost non-existent.

The skin on my arms, back and chest was adorning a huge amount of brown scaly spots and my skin was particularly sensitive, especially my fingers, whereby I could not touch anything hot as it is excruciatingly painful, it’s as if even my skin has become thinner?
Doctor then had an idea after finding my ferritin levels were over 1500. She tested me for hemochromatosis and Voilá I had a diagnosis. However, even after having my venesection/phlebotomy, one pint of blood every week for the last few months, my ferritin level is almost there (I’m at 80 now) I am still in so much pain and even worse feel completely washed out for three to four days after my blood letting.

In summary these are my symptoms:

Pain in my joints, yes all of them, sometimes excruciating, sometimes tolerable and this can change at the drop of a hat on a daily basis. I have been to the doctors more in the past 18 months than any other time I can remember.

The pains are always in my hips, neck and hands and in varying degrees in my knees, elbows and shoulders. Some days I cannot even dress without crying in pain and sometimes my hip, especially my right hip just gives way and I fall, which happened last Sunday. I went down with such a wallop and have a bruise the size of the map of England on my backside. Ouch! And, as I limp badly anyway because of it, my back also aches which causes even more pain. AAAAAAArgh!

Sometimes I feel so low because of this debilitation. I have trouble lifting things, I cannot undo a cap on a bottle, and I cannot use a can opener, chop vegetables, lift a vase of flowers, do the gardening, oh and so much more...............

My hair has become very fine and I grow about 2 hairs a year under my arms or on my legs, though some might say that’s a bonus! And I now have to pencil my eyebrows as there is very little hair there either.

Sex: Well sadly none! I seem to have lost all my drive and even though I do not have a man in my life and haven’t done for many years I’m not sure one would relish the idea of “NO sex please I have hemochromatosis“I mean, can you imagine how many potential partners I would attract? And as for actually performing the ‘ACT’ itself, well.......... they would never know if I was crying out in pleasure or pain!

More tomorrow had enough for today.

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