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Hi . I have autoimmune tyroid decease but I know I've something else wrong starting to think is it fibro cfs or me. I've cronic fatigue can hardly hold my eyelids open as if they are to heavy . Pain everywhere but it changes to diff places everyday my bones are sore to press on shoulders my neck an spine but also if I pinch my muscles the pain is dire . I feel as if I'm about 50 stone so many symtoms . I have been referred to rhemotoligist rang today an it's a 65 week waiting list . I would be very grateful for any advice . I'm also weak dizzy an my legs feel like jelly ..... Sorry for the long saga . Thanks in advance 😊

14 Replies

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  • 65 weeks is disgraceful11!! I caN relate to your symptoms. also, many of us have thyroid condions and many others too. join us. you are suffering, we are too. you dont need specialist diagnosis, we support each other, Tulip xx

  • Thank you so much I will . Thanks again for reply 😊

  • sorry, just to add, if you have half decent gp, speak to them about painrelief etc.

    struggling to type, i'm sure you will get more advice/support from our lovely members.

    tulip xx

  • Make a list of symptoms so you can decide with your gp which are the priorities.

    Sleep was top of my own list figuring I could cope with most things with some sleep, not doing as well with the plan as hoped but adapting as the situation demands.

  • Thank you great idea I will do the list 😊

  • Welcome to the forum and it is wonderful to make your acquaintance. I have pasted you a link to our parent site, Fibromyalgia Action UK which hosts loads of useful Fibro information: fmauk.org

    I am so genuinely sorry to read that you are suffering and struggling so much and I sincerely hope that you can find some resolution and relief to these issues. I agree with Ian, as making a diary can help a great deal when going to discuss these problems with doctors. It may also help to discuss what pain relief they can offer you in the interim?

    I want to gneuinely wish you all the best of luck.

    All my hopes and dreams for you

    Ken

  • Thank you I Realy appreciate all the replys it's very worrying when you don't know what is wrong 🌸

  • Hi I have hypothyroidism as of Jan of this year an my rheumatologist just told me I have fibromyalgia last week! Hope this helps

  • Oh that is strange seems to be a link thankyou

  • 65 weeks is one heck of a long time to wait.

    What personally helps me is hot baths and lots of rest. I mean lots.

    Part of controlling fibro is learning how to pace yourself so that you are not overdoing things.

    Meanwhile i agree with the others, see your gp and explain how bad thing are and see if he can help.

    Sue :)

  • Thanks for reply my hubby has secondary prog ms so I tend not to pace myself very much il have to try 😓

  • I too have auto immune thyroid disease and you describe exactly how I feel! Have seen one rheumotologist who was to say the least useless since found out she was a locus and no longer employed at our hospital. Just seen another consultant who seems to have a much better grip of the situation, restored my faith a bit in the nhs, just waiting on more blood results then back to see him for treatment plan, he did say something sensible which was giving symptoms labels doesn't make it better or go away and we need to treat and manage the symptoms to have a better quality of life. He also said working part time was much better option at the minute so have after much deliberation taken the step to reduce my hours and will see how I go so watch this space. 😃

  • Oh it is awful everyday I dread getting up but I dread going to bed because I can't get to sleep unfortunately my employer terminated my job which I loved so you should reduce if you can 🌸

  • Should say Locum!! Lol although as much use as a locus!!

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