• My health journey (getting diagnosed with Chronic Fatigue Syndrome)

    For a year or so now (maybe even longer, I don’t really know anymore) I have been suffering from a variety of different symptoms. A few of them being; constant fatigue, aching/painful body, trouble sleeping, sensitivity to lights, sounds and smells, extremely low energy & very low moods, memory issues and no desire to leave the house at all (and that’s not even all of them). I have now finally had a diagnosis, I have been diagnosed with Chronic Fatigue Syndrome with an element of Fibromyalgia. As it is M.E/Chronic Fatigue syndrome and Fibromyalgia awareness day (12th May) I thought I would share a bit of my story to getting diagnosed to raise a bit of awareness on ‘invisible’ illnesses.

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    The long journey to getting diagnosed..

    I first went to the doctors regarding the tiredness as my mum started to get a bit concerned as I never wanted to leave the house or do anything and my mood was so low. So the normal bloods were taken to check iron levels and things like that and it came back that I had severely low Vitamin D levels. The doctor prescribed me some tablets to help get my levels back up as a symptom of Vitamin D deficiency is tiredness. After a month or so I had another blood test to check where my Vitamin D levels were at and they had gone up to a normal-ish level, and again a few weeks later another blood test (I have lost count how many blood tests I’ve had now) and my levels had dropped again even though I was still taking the tablets. However with all of that happening and with my Vitamin D being at a normal level, none of my symptoms had improved.

    Once again, another blood test was done and this time it came back saying I had a borderline under-active thyroid. Usually they would wait 3 months and then do another blood test to see if it has gone back to normal by itself as this can sometimes happen (which has happened to me before) but my doctor didn’t want me to suffer for another 3 months until more results, so he prescribed me with Levothyroxine to help if my thyroid was under-active. A few weeks later, more bloods were taken and again, it had gone back to normal but my symptoms had not got any better and had actually got worse.

    At this time it was all getting a bit too much for me, especially with work and ended up getting signed off work for 2 weeks. Originally only for 1 week but at the end of the first week I had got a lot worse even though I had been bed bound for the whole week, so my doctor decided to sign me off for another week so I could rest.

    My doctor suspected it was Fibromyalgia and was fairly certain it was that. He also referred me to a Rheumatologist to give me a formal diagnosis. When I received the letter to arrange an appointment, the earliest one they had was 6 months away. It was a very long, tiring and confusing 6 months as I didn’t know what to tell anyone, especially work.

    6 months later I have had my Rheumatology appointment and the Rheumatologist diagnosed me with Chronic Fatigue Syndrome with an element of Fibromyalgia, this being because my main symptom is the fatigue with elements of pain, where as Fibromyalgia is more pain with fatigue (from what he told me), if that makes any sense.

    It was a very long process and journey to getting diagnosed, and now I have a whole new journey starting on learning how to cope and manage living with my chronic illness.

     

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    I hope that this post somehow helps people understand a little bit about chronic illnesses how much of a lengthy process it is to actually getting an answer.

    Thank you so much for reading! x

    5 Comments

    1. Barbara Anning-Webb
      12th May 2018 / 5:16 pm

      Well done Katie for writing your story. It is not a nice diagnoses for you to accept, but now you know what it is it must be a relief to get some sort of explanation for the way you have had to suffer for the past year. I wish you all the best for the way forward and hope things start to improve for you. Good luck. Barbara xxx

    2. 12th May 2018 / 7:37 pm

      Thank you for sharing you’re story and being so brave to do so! I’d never even heard of this syndrome so it’s great that you’re spreading awareness xx

      • 12th May 2018 / 7:38 pm

        Thank you so much, that really means a lot!! xx

    3. Jo Wilcox
      13th May 2018 / 4:02 am

      So proud of you Katie and so brave of you to share 💕

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