UPDATE BLOODS OK BUT.....

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Hi, I posed on here a bit ago, I had my new blood results, dr says all normal, but got raised Creatine, was told to drink more water and have bloods done in six weeks, the thing is I have looked into my other conditions, AS, deppression, GAD, etc, just to see if there is a link, also my Dad has Diabities, had bladder cancer, Mum has thyroid issues, COPD, RA, and wanted to make sure nothing sinister was going on with me, I have sever fatigue, headaces, back, neck, knee pain, and my muscles feel so week if I do anything, but now I can not ignore my arms, they feel like I have been punched, I can not lift them, it feels like what little energy I do have just drains from them, my legs had pins and needles in them, and the musscles twitch so much so I say to my hubby that I have to go back to bed, and find it hard to get out of bed every single morning, my balance is crazy, I went on an esculator and felt really strange, like I was going to colapse, I had to not look and then when I got off, had to stand by a table pretending to look at stuff so I could get myself together, I don't go out at all anymore, was the first time in a year!  So, I was dx with CFS/ME in Jan last year, been left to fend for myself in all that time, was told to go back on my anti depessants, as it will help with the symptoms, erh? no, just making me feel worse, then there is the brain fog, can't find words or can't take in info etc, I was wondering have I been mis-diagnosed, could it be MS?

Thanks for reading help would be great. x

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  • Posted

    idsa y it was cfs/m.e my muscles are very eak and twitch.i use a wheelchair that my hubby pushes when we go out now.i can only go out on short outings coz of the fatigue.i also thought i had m.s but my dr assured me it was cfs/m.e.
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    • Posted

      Hi Sarah, Thanks for reply, it is worrying at first isn't it, always searching for answers as I still concider myself new to this, I was looking at mobilty scooters for the same reason you have w/chair, the fatigue IS horrible, so i guess will have to accept dx, claim PIP and get scooter.  At least I my be able to get out.
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  • Posted

    It's funny...well, not really. Many people on this forum have, at one time or another, posted they were worried about possibly having MS. Myself included. In every case I'm aware of, that turned out to be wrong. Just ME/CFS rearing its ugly head. All your symptoms sound to me like ME/CFS. You need to get lots of rest and pace yourself. Are you currently seeing an ME/CFS specialist? Like an infectious disease doctor? It would be good to have someone knowledgeable in your corner.
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    • Posted

      Hi Jackie, Thanks for reply, no I have been left to my own devices, only seen dr 2 or 3 times since dx, been in bed mostley, learning to stop doing stuff that puts me back in bed has been the hardest apart from the fatigue, I was sitting on laptop last night and got pain shoot in my left had, god I'm like what is this now, and this is how it has been, every time something happends here I am wondering.  The stangest thin is I could sleep for a hundred years and still when I put my feet on the floor they hurt, I can't get my head round that one.  Anyway, I am sure there is more to come and understand. x
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  • Posted

    ive put in aclaim for pip but they say it can take 6 to 7 months as they are very behind with claims.a scooter sounds great but wouldnt work for me yet as i have a baby who has to go on my knee in the chair when we do go out.i get a lot of stares but a lot of nice people stop and make a fuss.ive just been diagnosed .i have 3 older children too who have been wonderful.this is a terrible illness my hubby had to give up work after 23 yrs in a good job its life changing in every way .good luck with finding a scooter and you can at least get out and about a bit then.x
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    • Posted

      Oh let me know how you get on with pip, that's a bloody long time though!  Yes, people can be nasty sometimes, I am sure they think I am drunk lol, my son is 14 now, he is a good boy but has ADHD and autisum, my husband lost his job last year, so he helps me a lot and helps my son get to school etc, mornings are terrible, well all day is really but heyho, could be worse I suppose, take care and hope all goes well with the pip. x
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