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new and afraid
Hi guys, and thanks for letting me join your forum
Im not even sure if Im in the right place to be honest as Im still waiting on diagnosis of my condition
I struggled on for a few years longer until recently when I suffered a particulary bad flare up was admitted to rheumatology. It was found that my CK levels were elevated signifiying muscle damage which fybromyalgia is said not to cause, with a little further pushing from my GP I have seen a neurologist who thinks I may have Myotonic muscular dystrophy, my mother, gran and aunty all suffered similar joint problems so may have been undiagnosed with them, Im currently waiting on the genetic blood tests coming back and also waiting on an appointment for an EMG to hopefully shed some light on it all, but I feel like Im stuck in limbo at the moment, 
cant work 
and how do you learn to overcome the feeling of being “useless” wee Linz xx
Re: new and afraidHello Wee Linz
I will admit that for me my MD’s slow deterioration has been the hardest thing for my mind to adjust to. It took me decades to realise [and be comfortable with] hours, moments, days when I feel utterly despondent. It is a natural reaction and says a lot more positive things about your character and personality than negative. It is human to want to provide and be capable and cope, anything that knocks our own self imposed expectations takes the wind from our sails.
When I was about 14 we had a free dress day at school, I wore my favourite black woollen dress [this was the early 80’s] and a pair of 1 1/2 high shoes. I felt 18, sophisticated and all proper. Walking home from the bus, in the rain, wicked bag on my hip, something caused me to stumble and down I went. Off came the shoes, tears added to the rain and I had to crawl into a neighbours garden and use the tree to haul myself up [please giggle at the sight, I am, lol]. I walked the next two houses up and flung open the front door, hurled my shoes into the house and screamed at the top of my lungs “I just want to wear nice shoes”. Parents heads appeared, completely bewildered at the sight of this snivelling, rain soaked, bedraggled creature at the door. Mum said “Tea or an Oxo?” as Dad went to grab a towel.
You do have to develop a thick skin and sometimes a stubborn attitude helps use the anger energy into getting through and toughing it out, but that effort can drain the energy and as we sink into the comfy chair or bed we mentally sink too. It has to, it is the ying/yang of life, ours swings are just more swingy and noticeable.
Just remind yourself that your success rate for making it through each and every day is 100%.
Recognise that you are in limbo at the moment, tests need to be done and appointments attended to try and narrow don the possibilities of what is affecting you, but we humans are impatient, we want answers now and solutions yesterday. Again a natural and normal human thing. For now don’t stress about the big picture, concentrate on today and preparing for tomorrow.
Welcome to our forum
Hope my magnum opus of a reply wasn’t too boring 
I'm always the animal, my body's the cage
I blog about nothingness www.amgroves.com
Re: new and afraidHi.
I am in a very similar situation to you. Have had years of pain and diagnosis of things like chronic fatigue. The doctors now think it’s a form of muscular dystrophy although as yet every genetic test is coming back a no. They’ve just told me to be glad it’s a very slow progression and that one day it will declare itself. I too, have very high ck. Im currently going through the same ‘I can’t provide financially and feel crap’ thing. All I can say is this- we are here to Listen. And reassure. And the guys and gals on this forum have kept me sane. And understood me far better than any dr.
(My neurologist says md doesn’t cause pain. HA!) I do hope you get answers because I think you can adjust a lot better if you know what you are dealing with. You can find kindred spirits in here. You know where we are….
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