ME/CFS

Lyngold

Any advise, I have just been diagnosed with ME/CFS

bg844

If it’s medical advise you are after the Scope forum isn’t the place for that, I advise you to speak to your GP. If you require anything else please ask.

Alex_Alumni

Hello there @Lyngold and a warm welcome to the community How are you feeling about your recent diagnosis?

What kind of advice are you looking for, perhaps we can help? 

trig

It's not the easiest illness to live with but the best thing you can do is listening to your body, if you get tired have a rest if it needs sleep have a nap it's all about pacing yourself and not to over do it. If over do it Your body will take revenge the harder it gets pushed the worst the pain and fatigue will be, our body will feel like it's being abused sometimes even tortured. Some days doing the dishes can feel like climbing mount Everest,, I've learned that planning how to go about every day life and journeys out helps a lot also planning for  flair ups making a list of movies /TV shows or games on phone or other devices or anything else that can distract you from pain I find aromatherapy always relaxes me. I asked GP for a referral to pain management clinic and did a few courses with them I learned a lot it showed me that accepting that your life is different now and  yes your in pain but I am in charge not my pain understanding my illness now meant adapting my life taking one day at a time makes it a lot easier. I've always felt tired my hole life but managed to live a almost normal life unit I turned 45 stress and trauma and me carrying on as if I was super woman unfortunately knocked me of my feet literally been house bound predominantly bed bound now for 4 years has taught me to take care of my body now and thanks to all the great technology I don't really miss out on meeting friends/family for coffee we just do it via video chat instead even days out I attend via phone if I am unable/unwell to go with them. Adjustments to make life what you need how ever much or little that'll be that's what Me/Cfs has taught me, pain meds often don't work, leves of vitamins D and B are  often low our body's struggle to absorb them naturally so supplements mite be needed but always and regularly get levels checked with GP. 😀😀

Alex_Alumni

Thanks @trig for sharing your own experiences of ME/CFS with @Lyngold, often it's helpful to hear other's experiences, and to know that we're not alone