Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
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Is this cfs or something else??

Discussion in 'General ME/CFS Discussion' started by siddle18, May 22, 2016.

  1. siddle18

    siddle18

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    So guys, I'm at a loose end and could do with some advice on a long-standing condition I just can't get to the bottom of.

    In 2008, after a night out, I woke up with what I thought was an almighty hangover. It wasn't. But whatever it was laid me low for a couple of weeks, with abdominal pain, joint pain, headaches etc.

    Blood tests were all fine.

    It dissipated to a point where it was just an inconvenience - I essentially thought I was fine again.

    But around a year later, I suddenly found myself getting tired. Not complete exhaustion, but that I was able to pretty much what I want to do, but knowing my limits.

    Until last year, with the exception of two weeks in six years in which I was off because I was burnt-out, that meant I was able to continue working as a journalist in a very busy. stressful newsroom, doing a job I love.

    In August, however, I felt more exhausted. I developed some kind of IBS, and went back to my doctors. A new raft of blood tests were ordered, which revealed nothing - except off the scale cortisol levels.

    I carried on working and last month, an endocrinologist ruled out Cushings Syndrome and discharged me, and said my cortisol had come down into very top end of the acceptable range.

    This week, I signed myself off work for the week - I'm just so tired. Now I'm on a mission to work out what's wrong with me and fix it!

    So, at the moment, my main symptoms are this:

    Exhaustion - doesn't matter how much sleep I get

    (New) Joint cracking - my body is popping like a box of rice crispies, especially grinding in my neck and popping in my shoulders

    (New) muscle aches - in my legs. Especially upon waking.

    Blepheritis around my eyes, and dark circles

    Lots of floaters in my eyes

    I guess the questions I'm trying to have answered are these:


    ME/CFS

    Could it be this? If I really did have CFS would I have been able to work for eight years as a journalist/news editor in an insanely stressful office, with just a couple of weeks off here and there when I 'burn out'? Surely post-exertional malaise wouldn't allow it?

    I've been on holidays and travelled with work and been largely okay.

    If it was CFS would my cortisol levels be so high?


    DEPRESSION/ANXIETY

    Have I caused these symptoms myself by constantly worrying about them, and stewing over everything and analysing every little thing that feels wrong?

    I'm sick of being sick - but like I say, I have a job I like and an amazing partner.

    I'd love to know your thoughts.

    I'm going back to my GP next week, I'd love to know what blood tests I should demand.

    I'm tempted to go on pills for anxiety/depression. Which ones would be best?

    Thanks so much.
     
    Effi likes this.
  2. Effi

    Effi Senior Member

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    hi @siddle18 , welcome to PR! Just a quick question, when you say 'off the scale cortisol levels', do you mean too high or too low? First thing I thought when I read your story is: have you looked into Addisons's disease? It's some sort of adrenal insufficiency (similar to cushings) and has a pretty big overlap with CFS.

    Having ME/CFS doesn't necessarily rule out the ability to work. There are patients who are able to keep working for a long time, but usually that involves an insane amount of rest in between (virtually ALL your free time), and/or working less hours.

    Another way of ruling out if it's ME/CFS or something else is PEM. It's kind of difficult to figure out, especially when you're very active, because if you have ME, you might be in a constant state of PEM. Keeping a symptom diary might help you find some clues.

    Just hang around for a while and you'll see if you recognize most things we talk about here, or not. :hug:
     
  3. siddle18

    siddle18

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    Hi @Effi - my cortisol was really high in November and had come down slightly in April. I know CFS is associated with low cortisol, so that puzzles me.

    I'm just so exhausted. My muscles ache, my body is clicking everywhere - which has never happened before -I presume this is a flare up of something, I just don't know what.

    I've been working for years but the tiredness has meant I don't do much in evenings and at weekends. At the moment, I feel like I couldn't work even if I tried.
     
    Effi likes this.
  4. Effi

    Effi Senior Member

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    @siddle18 I'm not an expert on testing, but I do know that cortisol is best tested in 24h urine. Cortisol measurement in blood or saliva can easily give you a false positive result, cause you could just have had a single spike in cortisol right before your blood draw (e.g. cause you just had an argument on the phone with someone from work while waiting in the waiting room). A 24h measurement is a lot more reliable.

    Have you had a thyroid panel done? Thyroid illness is also hard to diagnose, it goes unnoticed a lot. http://hypothyroidmom.com/cortisol-and-thyroid-hormones/

    Joints popping and cracking is something you hear a lot when it comes to adrenal fatigue, but that's another one of those diagnoses that aren't really helpful...
     
  5. grapes

    grapes Senior Member

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  6. Cubbies2016

    Cubbies2016

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    Saliva testing by far is the most accurate. 24 hour urine is the worst as its not looking at specific times but overall cortisol. So if you have high nighttime and low AM it will show a normal result but the patient is far from feeling normal.
     

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