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Fibro diagnosis but still convinced it's something else !

Posted , 9 users are following.

Hollymayshipton
Hollymayshipton

Hello all,

for months now ive had varying symptoms and all the docs would do is send me for repeated blood tests, which only showed that i have raised "ESR" markers and vit d deficiency. I went to a consultant and he's diagnosed me with fibro and im due to start on Ametriptaline soon, but i'm still worried that its something worse e.g. brain tumor. I have anxiety and the main symptoms that are making me worry are headaches every day, someties only on the left side, muscle twitching, random and frequent hiccups and intense neck pain which ive read are all linked to brain tumor. I do hurt all over but my head and neck seem to be most affected and its frightening me. I feel silly saying this to the consultant as i preferably would like a head scan and someone to tell me why i have raised ESR as i read it can be linked to tumors. Can anyone relate or offer any advice ?

thanks, Holly

3 likes, 26 replies

26 Replies

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  • jasmine2015
    jasmine2015 Hollymayshipton

    Posted

    hello Holly, I am newly diagnosed with fibro, I have had very bad dizzy spells, chronic one sided headaches and chest pain. my biggest problem is severe knee pain on going up and down stairs and my feet feel like like my ankles are sprained when I walk. I take amatriptaline at night which enables me to sleep pain free. they also said i have hypermobility syndrome. I too worry what if theyre wrong and i have somthing more serious. but I have a lovely family and friends who support me. I work and am on my feet alot, but work are understanding. I wish I could get rid of the feet pain as walking my dog is hard work and as my exercise tolerance has decreased I have put a few stone on and struggle to loose it.the consultant suggested cycling and swimming, so ive bought a bike and it is far better than walking! im going to try to fit cycling and swimming into my weekly plan but do it as a family.fibro is hard for people to accept as people cant see the pain your in. goodluck on your appointments. my dr and consultant were great hope you have the same. take care. xeek
    • Hollymayshipton
      Hollymayshipton jasmine2015

      Posted

      It's nice to find someone who has similar symptoms, I too have he chest pain and my hands and feet cramp a lot and all of my joints are very noisy. It's a scary condition but hopefully will get easier for both of us xx
  • mummajoey
    mummajoey Hollymayshipton

    Posted

    Hoping Holly had a better day today, and all the other folk on this discussion suffering so badly jus now. xx
    • anne90395
      anne90395 Hollymayshipton

      Posted

      Hello Holly,

      You have received lots of great advice already. Just like to share my experience with you. I also was very worried I might have brain tumour when I first started having these weird symptoms. Was in hospital having loads of blood tests, MRI scans and even a lumbar puncture. The reason I was so concerned, my Mum died from a brain tumour, but she never had headaches. Nor did I, still don't, so it was a worry for me, could still be a brain tumour without headaches. Obviously I am still alive 2 years later. Don't be afraid to ask your consultant why they think it is not a brain tumour, and ask for a second opinion if you are not happy with reply. Good luck and keep us updated.

      Take care, Anne

       

    • mummajoey
      mummajoey Hollymayshipton

      Posted

      I am struggling this week, but a lot of extra stress and grief as my lovely dad died before Chrisymas and the funeral is Monday 5th Jan.  But I know he in a better place, and will have time to chill from Tuesday and reflect. Sometimes the pain killers dont seem to do anything,it is horrid, I agree totally. Just have as relaxing a day as possible, keep warm, and tell yourself it will improve, it always does... eventually, just frustrating and frightening at the time, but by accepting you having a bad day or week you may relax.  Ignore anyone who thinks you making too much - they dont know if they havent experienced.  Much love xx

       

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