What is the best tool you have in your CFS Management Toolkit?

  • @Dot Good question...and also a tough one! For me, it’s my heart rate monitor to aid pacing...but I don’t think we realise how many different management tools and strategies we utilise every day, I think we’re all pretty amazing 💙

  • Music , for comfort, relaxation, therapy.

    I have a huge collection for different moods, it distracts and soothes.

  • Actually thinking back without doubt the best tool I ever used was a dual channel TENS unit.

    I had a fantastic Australian designed and made unit, still have it. A TENS was recommended to me by the RAH Oncology Unit who loaned me one on trial after which I purchased my own.

    By connecting the electrodes across specific dermatomes and adjusting the pulse rate, waveform and intensity to a mild non muscle stimulating setting it very effectively gave me a full days pain relief drug free on the appropriate limbs.

    I programmed it to block the pain in my limbs, either both legs at once or both arms.

    I am not sure but I believe that current units are designed for muscle excitation and do not have the milder settings for blocking nerve pain.

    I also used the cold arms of metal chairs for pain relief on my arms when sitting and pencil points to work the tenderpoints for relief from fibromyalgia pain.

    Sorry, that was more than one thing!

  • For me, I think it is my meditations. It’s the best way for me to get really deep rest and turn my brain off. I have become kinder to myself with my practice, sometimes I think the whole way through and don’t even realise it till the end, but that is ok too, I still get the benefit of being still.

    I am lucky I have a small seperate section in my bedroom, I have my yoga mat set up, pillows and blankets ready, essential oils burning. Often there are lorikeets sitting in the gutters having a drink/bath so I watch them for a bit, I can see the sky and clouds passing by.

    I have a variety of favourites, sometimes just music, yoga nidra, laughing meditations, whatever I feel I need. If I am feeling “dark” I can usually get myself out of it and refocus.

    It’s not for everyone, but is the thing for me 🙏

  • Community Moderator

    @Looch I'm feeling more relaxed just reading your description. Sounds so peaceful.

  • I would have to say keeping a medical diary of my symptoms and current medications. It helps me a lot during my medical appointments to keep track and remember and also makes it easier to record on centrelink papers my symptoms and what I have tried as I have my diary as a reference.

  • It is so good reading through the different tools people find so useful for managing this difficult ME/CFS. It is adding up to a very useful toolkit.

    Your meditation post @Looch, made me think about how useful I find mindfulness, even when I have to be mindful of all my rotten symptoms. It is a reality check that helps me make the best decisions.

  • Oops I meant to add, @donnamarie I am starting a medical diary to get a proper handle on my breathing difficulties, which will be so useful for me, I hope, and to take to the Exercise Physiologist. So much better than vague data running around my head!

  • @Dot Well, done! That is a very good idea as with 'brain fog' being a common symptom it is hard to recall everything!

  • @donnamarie True! And I am not that reliable even without brain fog. 😄 😄

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