ME/CFS, Fibromyalgia and TMJ: Health Update!

Hi guys

I’ve noticed that my posts about my chronic health conditions get quite a lot of viewers.  I think this could be because there aren’t that many chronic illness blogs out there, and we spoonies like to read about others with similar conditions.  There’s always the hope that someone may have tried a treatment or medication you haven’t heard of, that could help you.  Have they found a successful way to manage their condition, or do they have some hints and tips that you could benefit from?  I hope that some of my posts have been useful – I especially think anyone with TMJ/TMD could benefit from this post, as I have tried almost every treatment going (bar surgery) for my TMJ!!

I never really go into the details of my work situation on here, for obvious reasons.  At the moment, I am signed off sick, as I was too unwell to successfully complete a phased return.  The only benefit of this is that it gives me the time and space to concentrate on trying anything I possibly can to help with my conditions – including lots of rest!

My ME and fibromyalgia are always fairly life-limiting – they get in the way of me leading the busy and active life I once had.  I had a huge ‘crash’ on 24 December (yep, just in time for a Christmas spent on the sofa!!) and spent the first 4/5 months of 2015 predominantly bed-bound.  I have spent a lot of time trying to work out what triggered this crash, making my ME and fibro the worst they had ever been.  All I can think is that I did lift a few boxes at work – I know, I shouldn’t have, but it was only a couple and it needed doing that day.  I really didn’t imagine it would have such a big impact!  Maybe it was entirely unrelated and one specific thing didn’t cause the crash.  I don’t know!  I only wish I knew what caused it, as that would help me prevent it happening again in the future.

After around 4 months spent in bed, I finally started seeing some very small positive changes – I was able to spend a few hours out of bed, or wash my own hair.  Eventually, I did have a few weeks where I managed a few hours at work most days, but sadly this didn’t last.  It was all amazing progress though, considering how very unwell I was earlier in the year.

The small improvements are definitely still happening, but after 6 months, I am starting to get frustrated with the slow pace!  I repeatedly have to remind myself how bad I was, and how well I’m doing.  Yes, I may still be unable to work, or to get out of the house every day, or to do the cleaning etc… but I AM having the odd good day, I have made it to a few social events, I am spending more time awake (haha!)  The thing with ME/fibro is that improvements don’t just follow a smooth line upwards – there are setbacks, big and small.  It’s easy to experience a setback and think you’ve gone back to square one, but that’s not always the case.  You have to step back and look at the bigger picture.  I couldn’t open my own Christmas presents in December as I was so poorly.  Today I made my own lunch.  That is a huge improvement and I need to keep reminding myself of that!

I’m still titrating my Amitriptyline upwards to try and help with my pain levels.  I am due to go to the pain clinic at the end of the month, which I have some hope for.  I am undergoing physiotherapy for my TMJ (jaw disorder) again, which I hope will keep the pain levels manageable.  It’s all a work in progress… as it has been for almost two years now!  Whilst there isn’t a ‘cure’ for ME and fibromyalgia, I remain hopeful that I’ll find the right combination of medication and treatments which will mean I can lead a somewhat fuller life.

Courage quote


If you have a chronic illness, how are you coping with it?  Do you find it difficult to stay hopeful, or are you a naturally positive person?  Let me know your experiences in the comments box.

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0 thoughts on “ME/CFS, Fibromyalgia and TMJ: Health Update!

  1. Donna // Fibro Geek says:

    I can relate so so much to this Katie. In fact, my story is scarily similar > huge crash, left bed bound, slowly working at improving my health, failed return to work, still off sick. I have the same outlook and hopes as you too 🙂

  2. Moongazer says:

    I’m in a similar position, gradually recovering my strength and activity levels. I still spend more time in bed than I’d like and some days I am only up and about for a couple of hours, some days are better.
    I get down and disheartened with every setback and too often I pushed myself too far too fast. But every day that isnt a good day, I tell myself there is always tomorrow. I keep trying new things (not medicines) and have recently had success with co-enzyme Q10 and d-ribose based on recent research findings and I am about to enter the next phase with new supplements to build on that success.
    I think that the day we give up is the day we give in and that just isnt an option.
    So for me, its probably more a case of being terribly stubborn than being hopeful.

    • Katie Cupcake - Life with ME says:

      It’s so easy to get down and feel like you’ll never improve isn’t it? We need to remember there WILL be better days in our futures! Your supplements sound interesting. I’d be interested in trying something like that. Keep being stubborn and don’t give in, haha!

      • Moongazer says:

        There’s a link on my blog from a couple of months ago to the new research findings. But basically the mitochondria in our cells dont function properly. The mitochondria is the structure in every cell of the body (apart from blood cells) that produces energy. So its no wonder we feel like rubbish all the time. The research shows deficiencies in co-enzyme Q10, d-ribose and growth hormone. You need 300mg of Co-Q10 for therapeutic purposes (ignore the RDA). After a week or two of taking it that flu-like feeling improved tremendously and I have been up and about more in the last couple of months than the whole previpus year 😀
        My next phase is selenium and iodine to detox (and help my cells out) and boost my thyroid function. I am allergic to fish so have never eaten it and that is the main source of iodine. My thyroid function has been low for over 20 yrs but just 1 point above what the nhs will treat.
        I think Co-Q10 is a must for everyone with FM and chronic fatigue. Definitely worth you trying it.

  3. thoughtfulpigeon says:

    I think I’m generally a fairly positive person but the first few years with ME were very hard as it seemed like there was no improvement, I still couldn’t go out and was stuck at home all the time but when you look at it in the longer term there were improvements. I think it’s often hard to see how much you’ve improved when you just think back to last week but when you think back to months ago there might be something that you can do now you couldn’t then, that’s what I try to focus on more.

    I was recommended Co-Q10 8 or 9 years ago and found it fairly helpful though I did find that my body didn’t get on with a high dose, I had too much energy to sleep, but once I found the right dose it seemed to help when I really wasn’t feeling good. I’ve managed to come off it as I wanted to try and manage without any energy boosting things but it’s definitely worth a go and see if it works for you. Echincacea and EPA omega 3 oils were others they recommended, though Echinacea is hard to find in stores like it was then as they changed the recommended way you take it but it does help keep colds away which I seem to catch all the time when I’m not on it and really don’t help ME.

  4. Kristine says:

    Hey Katie! Wow, that just SUCKS. I’m so sorry you’ve been down and out since Christmas. How miserable, and I’m glad to hear you are having a few good days. I can relate to the ‘setbacks’ and the upturn not being a smooth upward trend. It’s weird how I can feel suddenly better, then crash an hour later. Hang in there kid! 😉

    • Katie Cupcake - Life with ME says:

      Aww thank you for your well wishes! Yeah the unpredictability and the crashes are one of the hardest parts. I had a read of your blog and I see you suffer from fibro too – no fun! I really liked your healthy recipes (and the not so healthy but yummy yellow cake one haha).

  5. Brandi Clevinger says:

    I also have to remind myself how far I’ve come in my treatment. I get upset when I get a flare, and I have to remind myself that not too long ago I couldn’t go even a day without a flare.

    I’m not a naturally positive person. Chronic pain and fibromyalgia have taught me to be that way. Weird how it all works, uh?

    Thanks for sharing your post! I found your post at Fibro Friday.

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