Fibromyalgia diagnosis

Hello everyone, I would just like to say that I finally had my appointment with a Rheumatologist yesterday after waiting 5 months and I have been diagnosed with Fibromyalgia. ( I had diagnosed myself with this about 2 years ago). Sorry the Nurse instinct in me has been researching for so long. She was a nice Russian Consultant, that was very thorough and understanding. She is writing to my GP, she mentioned not to take anti inflammatories (like the ones my gp had given me but not taken), as it was not inflammatory. She did bloods and said she wanted to rule out other things (?). Amytryptolene was mentionned very low dosage, (doctor gave me previously but had not taken), yes you have gathered quite anti drug based, but if necessary will do. Sleep, importance of that, vit D Ferritin was also mentionned. At least now I can go back and fight my Pip refusal and have an appointment with the CAB again next week. Still trying to recover from my mid left foot fusion and hope to get the bandages and stitches out on Monday and pot put on. I have gone down into the lowest depths of depression at times, but I am fighting back and I am willing my spiritual soul to pull through. Good luck to each and everyone one of you who is going through the same thing. I wish you all well............x

10 Replies

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  • Hi marmaris, glad you finalygot your diagnosis. Now you will be able to move forward and get the best help possible. Upwards and onwards. I was diagnosed by my GP, I have never saw a rheumatologist and have been told that I should have seen one as only a rheumy can diagnose fibro. I now believe this not to be sure and am still annoyed by this remark. Wishing you well, Mags x

  • ' not to be true" sorry - not 'sure" lol

  • My understanding is that a GP can diagnose Fibro and prescribe any and all drugs. However, we have those who still don't believe in it and those that have had no training in it so seek the reassurance of a Rhume for themselves not the patient. My GP is great but my Rhume was useless and I actually had to complain about him to get things moving!

    Good luck Marmaris your a real FIBRO fighter and the diagnosis should help towards your PiP claim. Make sure you fill it in as your worst day!

    Patrick x

  • Many thanks Patrick I will, and I intend to hand in copies of a pain diary that I am making Big Style.

  • Good! It's really like preparing for a court case with a hostile panel.

    I am also lucky enough to still be on DLA to the end! I am on the North East corner of Hampshire one of the last to change, but it will come to us all !

  • Thanks Mags49

  • Thanks Mags49

  • Hi Marmaris,

    I'm also anti-taking meds, but have realised that they are a necessary at the moment. On diagnosis about 4 years ago I discussed taking meds with my GP using the argument that with long term use, maybe they could cause problems down the line. His reply was while that may or may not be true, would I rather have a better quality of life now (less pain, some sleep) and take the risk or live in constant pain with no relief and very little sleep, bearing in mind suffering would also have an impact. Anyway, when he put it like that I thought I'd prefer a better quality of life now ;)

    I take a small dose of Amitryptyline (30mg at night) for nerve pain and have found that while it does not completely get rid of the pain, it does help quite a lot. I discovered this when I reduced them and realised how bad my pain could be ;) Anyway, I understand that you would rather not take meds, but they could really improve your quality of life. As you'll appreciate though, it can take a while to find out which ones work best for you and the dosage you need.

    On a plus note, I am 2 months into coming off Zopiclone (had it to help with sleep) and I'm finding that my sleep is still OK. Should be off it in about 6 weeks all being well :) I want to come off as much as possible, but I think I'm stuck with Amitriptyline ;)

    Good luck with fighting for PIP. I'm one of the lucky ones who seem to be on DLA till it runs out (Jan 2016) before I have to apply for PIP. Purely to do with my postcode and it not being rolled out here yet. Hope CAB can help and I think the FibroAction website has some useful information too.

    All the best and hope you recover from your foot surgery soon :)

    Pip xx

  • Thanks Pipx

  • I am delighted to read that you have finally got your diagnosis but so sorry that you have Fibro. I wan to genuinely wish you all the best of luck.

    All my hopes and dreams for you

    Ken

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