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Is this chronic fatigue or something else?

Posted , 10 users are following.

siddle18
siddle18

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) Slight muscle aches - in my legs.

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 to try and give me more energy? 

Thanks, 

1 like, 11 replies

11 Replies

  • toni62403
    toni62403 siddle18

    Posted

    Hi there,

    I'm sorry to hear you're having such a hard time of it. My first suggestion would be to stick away from any tablets until you can figure out what the problem is. If it is CFS then taking tables might mean that you end up pushing through and ignoring the symptoms that are telling you to rest. I have found that with good pacing I am able to function at a level where my symptoms are really minor - they only get worse when I ignore my body and push through and use up more energy than I have to spare.

    I had really extensive blood tests, MRI, heart and stomach examinations before they decided on CFS so I can't tell you what tests you will need to ask for but persevere! I had my Cortisol levels tested and mine came up totally normal so I can't really comment on why yours are so high. 

    What I will say is that if you have CFS or if you feel you are ruminating on your symptoms and are feeling anxious and stressed about them then I would highly recommend CBT - I was constantly worrying about what my symptoms were and what they might mean, or what might be causing them. I found CBT really helpful for managing these feelings. If you do have CFS then CBT can help you find your baseline and I would say is the reason I feel  so well now - I still can't do more than my energy will allow, but it has  given me some guidance on what I can do without overdoing it and increasing my symptoms and making myself feel unwell. 

    For me post-exertional malaise comes on when i have gone over my 'energy allowance' I find I can really push myself  and work through any feelings of being unwell, what I like to call my warning symptoms that I am begin n ing to overdo it. what happens then is maybe 24-48 hours later I will begin to feel really really unwell - all of my symptoms will be really overwhelming and it almost feels like I have the flu, can't get out of bed,hot and cold sweats, my whole body aches. I Imagine everyone's experience is different but this is what I would describe my experience of post-exertional malaise is. For me it's not that I can't do things its that I will suffer for it afterwards. 

    I don't know if this will be helpful - or if it answers any of your questions! 

    best of luck!

    Toni

    • Elmo69
      Elmo69 toni62403

      Posted

      Toni -All sounds very similar to my experience of post-exceptional malaise!

      Plus agree totally about not starting medication at this point as might confuse things!

      Siddle - yes, it is possible to have had cfs (or it to be developing) whilst continuing in a very stressful job. Most sufferers are of the personality type whereby they just keep on going but the body eventually will start to fail and make you have to stop!

      Check if there is a local CFS service locally which your gp can refer you to. There are NICE guidelines for gp's to follow re: excluding other causes before referring so tell your gp this when you attend. Even print off the guideline from NICE and take with you.

      Meanwhile, see national websites such as Action for ME and ME Association for info. Good luck. :-)

  • caroline_c
    caroline_c siddle18

    Posted

    Hi. Sorry to hear your going through this. It sounds to me as if you have a very stressful and demanding job and work long hours. I'm only giving you my personal opinion but I think you should see your doctor and talk this through. Depression can cause all kinds of side affects as can stress. Just how low...depressed and stressed are you? It may help to try medication but you should also look at your diet and life style. Do you eat the right foods etc. It also could be cfs but with me I'm exhausted to the point I don't function and had to give up work...and my social life as I'm just not able for it anymore. Please see your gp. I wish you the very best of luck and pray that you don't have this awful disability that robs you of so much. Gentle hugs
  • wknight
    wknight siddle18

    Posted

    You can work with CFS, I did, but eventually I gave up my very stressful job to get better. 

    CFS is the diagnosis when everything else is ruled out. Worrying absolutely wont help and will make any condition much worse. 

    Depression medication does not give you energy. Energy comes from the food you eat (check out professional cyclists) , enough sleep and how much you can physically do. 

    Think about this, can you run 26 miles without training, of course not. Yet we set similar demands on our bodies at work and expect it to cope. Time to take a step back and learn just how much you can do and feel ok the next day. Its called Pacing and for me it was the key to getting back to a normal life and why I gave up work. 

    If you are expecting magic pills I am afraid they don't exist for CFS

  • siddle18
    siddle18

    Posted

    Thanks for your replies. 

    Toni, I haven't had anything but blood tests so I need to push this with my GP. I'm definitely rummaging on my symptoms, and panicking. I can't think about anything else at the moment. I'm worried that I'm never going to be better than I am now. Also, I have had these crashes in the past (though not to this extent) and been able to recover to be able to work.

    Caroline, I'm not sure if I am depressed or the illness has made me depressed. I'm certainly anxious about the future and worry about how so many things could fall apart if I don't get better. 

    Wknight, with regards to antidepressants - I meant I've heard there are antidepressants that make fatigue worse, and some lift it slightly. I don't want to go on the wrong ones, if that is an eventual option. 

     

  • wknight
    wknight siddle18

    Posted

    As my GP explained it to me, you can keep taking out, but if you don't put enough back in, eventually the tank will be empty. Sounds like you are now on empty

    time to start pacing, I did what you are doing, tried to keep going and it usually doesn't work. Eventually you reach empty. If you want encouragement after 2 yrs of pacing and no stress in my life, I retrained my body thru cycling, did over 30 miles recently with no adverse affect 👍

    • siddle18
      siddle18 wknight

      Posted

      If you don't mind, what's your brief story. When your illness was at your worse and you started pacing, what was your daily activity like?
    • wknight
      wknight siddle18

      Posted

      Because I am on my own and was in a very well paid job I wasn't prepared to give up my job. It involved lots of stress, very long hours and lots of travelling, often overseas. I kept going and use to spend weekends in bed but in the end I realised that I had to be in a position where I could control what I did. So I saved up a lot of cash and then took the plunge of giving up work. 

      That meant I had no stress and control over what I did and when I did it. I also learnt to say NO. I told a few close people why I cancel things at very short notice as I realised that until I got my energy levels under control I would never beat CFS. I get up when I am ready. I listen to my body and if I am tired I stop. Time to sit and watch a movie, read a book. I also use to spend 30mins laying on the floor doing nothing, again advice from my GP.

      The brain fog was bad for me so when I was resting and felt like it, I retrained my brain with games on my iPad like Suduko and Solitaire. That worked really well.

      The challenge was learning how much I could do without putting myself in bed. By virtually stopping everything I soon noticed that I wasn't taking to my bed. I still felt tired but the bed wasn't calling. 

      When I was ready. to increase my energy levels I took to cycling. Initially on a trainer indoors, just simply spinning the wheels for a minute. I slowly built it up until one day I bought a road bike and took it for a 20min ride. I could do 20mins on the trainer by then, well that didn't work, in bed for several days. So I went back to riding indoors and only took the road bike out for 10mins, that worked. Very, very slowly I increased the activity. Its been a very,very long road but pacing worked for me. 

      When I did get setbacks it would be for a day, not many days so I knew I had only tipped the scales a little. That is the key and its hard not to do too much

      I was lucky that I had a GP who recognised the condition and had other patients with the condition who were on the recovery road via pacing. When I heard their storied I thought I am going to beat this. 

      All the best

  • jackie00198
    jackie00198 siddle18

    Posted

    Your symptoms are a bit vague to know for sure what's going on. But, yeah, it could be ME/CFS. One typical pathway into this illness is that it can start out very mild. So you can still function and push through the symptoms. But then, precisely because you've pushed through symptoms and haven't gotten adequate rest, the illness flares or you relapse, with more intense symptoms. Anxiety and depression can actually be caused by ME/CFS, because of what the illness does to the brain. Of course, they can also be a secondary effect of having to deal with ME/CFS. If indeed you do have this illness, there is currently no treatment or pills. The best way to give yourself a chance for recovery is to get plenty of rest, pace yourself, and not try to push through the fatigue. I did this, and as a result, am now dealing with a severe form of ME/CFS 15 years later.
  • katrinablank
    katrinablank siddle18

    Posted

    I think your biggest clue could be eye floaters... to my knowledge, that's not a common complaint for folks with CFS. Sometimes when pressure is placed on certain areas of the brain, eye floaters can result. I'd definitely look into that and specifially ask if there is a way to make sure your vision fibers are okay. Best of luck in your search for answers!
  • Beverley_01
    Beverley_01 siddle18

    Posted

    Hi there,

    In relation to working with cfs/me a surprising amount of people on here do manage to. I don't and can't travel much witout payback but, we're all different. The NHS says there are 3 levels of cfs/me : mild, moderate and severe. Google and see what it says about each category. It can get worse as well as better so you may just be having a blip.

    Re the eye floaters, I get these too and believe it's low blood sugar levels that cause this? But, check with GP.

    Like others have posted here, I wouldn't start any meds until you know for sure what's happening, high cortisol levels are associated with stress but, cfs/me puts the body Into constant overload so, could still be this.

    Hope this helps

    Beverley

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