ME/CFS recovery?

Energy is continuing miraculously and I feel so much more positive. I'm very aware though that it could be just spring arriving. But I haven't felt like this for many years so I am very hopeful!

I do think the acceptance of it as a genuine illness has grown. The doctor who was treating me after cancer and radiotherapy definitely didn't believe it existed. That's rare now thank goodness. I am very lucky that I have never been bedbound or confined to a wheelchair; my heart goes out to those of you who have and whose relatives have.

Thank you Cossy. Yes she does belong to on line support groups and she also has many internet friends she chats to when she has the energy. The internet is a lifeline for her.

Glandular fever is a nasty thing that can cause depression for quite a while after recovery I believe. I remember someone I knew who was training to be a doctor waiting for test results knowing that he either had leukaemia or glandular fever; it was the latter. I don’t understand why some conditions are so overlooked; I don’t think ME ever got over being branded yuppie flu at the time. The people I met said the problem is that the sort of people that suffer from it are usually very hard working achievers and when they can function properly no one seems to believe them when they then crash afterwards. Awful and unfair.

Quaver22

My daughter is almost bed bound. On the rare occasions she goes out I push her in a wheelchair. She might then be a week or longer in pain and absolutely exhausted. She has been ill for 30 years and had to leave school when she was 12. She has no friends and is isolated from people her own age.Sadly there is no treatment that has made any difference to her condition.
It is a cruel and devastating illness.
I really hope Choudancer that your recovery will continue. Keep us posted!

Has your lovely daughter joined any online support groups? For this to happen at such a young age us just awful

This might seem such an awful thing to say, but this post has actually made me feel so much better about myself and the amount of time I spend resting and actually in bed.

I always feel so terribly guilty but if I don’t to back to my (lovely) bed, literally fall asleep in my chair or on the sofa.

My heart goes out to all, carers or those having these horrid conditions.

Here’s to recovery

Thank you Sparklefizz. There is so much misinformation, lack of knowledge and sympathy/empathy that I rarely discuss DDs condition with anyone. It is only recently that long covid and its similarity to ME/CFS is being recognised.

DD is on several support sites where fellow sufferers are able to really help and support each other. I knew nothing about this condition and I am ashamed to say that, before she became ill, I would probably not have been very sympathetic myself. I know more now of course. And I have every sympwthy for all sufferers now.

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I have had ME/CFS for 38 years since catching Glandular Fever from my daughter. I have had 2 lots of cancer during that time, plus developed other illnesses and conditions, amongst them Fibromyalgia, EPI and Osteoarthritis, so my health has been very complicated. For years I was bedbound, and although I manage to live on my own nowadays, I still go back to bed in the afternoons.

I believe, like Maybee70 says, that the microbiome is involved and have had mine tested and tried to rectify the imbalances that showed up, but I haven't improved. Glandular Fever and other nasty viruses such as Covid, play a big part in triggering ME.

Sending all my very best wishes to Choughdancer, to your daughter HelterSkelter and to anyone suffering. It truly is a horrible condition and some doctors' attitudes only make it worse for us.

I don't have any of the illnesses mentioned but I too experienced an inexplicable energy surge last week and put it down to the sunshine!

Laura Hillenbrand the American author suffers from ME and I didn’t realise at the time that I was reading her books that she wrote them from her bed. It’s the most awful thing and still doesn’t have the research done that it should have.

My daughter is almost bed bound. On the rare occasions she goes out I push her in a wheelchair. She might then be a week or longer in pain and absolutely exhausted. She has been ill for 30 years and had to leave school when she was 12. She has no friends and is isolated from people her own age.Sadly there is no treatment that has made any difference to her condition.
It is a cruel and devastating illness.
I really hope Choudancer that your recovery will continue. Keep us posted!

I’ve long been sympathetic to ME sufferers ( and now long covid sufferers too) after having a friend in Edinburgh who suffered from it and meeting several of the support group he belonged too. I was wondering if the way forward is feeding the gut biome ( probably because I keep listening to the ZOE podcasts and they make a lot of sense to me).

Thank you choughdancer. It is a very horrid condition. My daughter is currently bed bound. She climbed mountains and was a runner, paddleboarder and kayaker.

This lovely song relates to a lot of posts here.

www.facebook.com/reel/906199942047583

HelterSkelter1

My daughter had long covid now ME/CFS. I would love to know how your daughter triggered her recovery choughdancer.

Unfortunately no trigger, just gradual improvement. She's definitely not completely well even now.

My daughter had long covid now ME/CFS. I would love to know how your daughter triggered her recovery choughdancer.

MartavTaurus

That's good news. 👍

I have a friend who likens her long covid to ME, it really wipes her out. So it would be great if these illnesses could be reversed never to appear again.

I think it is very similar; my daughter had long covid too and it took a long time to recover. She was very active before and ran marathons regularly. Over the long covid time she put on a lot of weight. She's back now to being very active and has worked so hard to get back to running marathons and runs regularly; I'm so proud of her!

NotSpaghetti

Meant to say that I truly truly hope you have somehow shed this!
🙏

Thank you NotSpaghetti! I do hope your husband recovers too.

Whitewavemark2

Well - I am also a sufferer and I’ve learned that when I experience that energy boost I invariably over do it and then crash. The trick I think is to continue to be sensible. Easier said than done when I feel so full of energy.

That's what usually happens to me too; it's SO hard to resist that desire to overdo it. But this time it really does feel different. I had to be very active 2 weeks ago and was fully expecting to crash.
But I didn't and still haven't. I feel unnaturally full of energy but wonder if this is just 'normal' and I've forgotten how that feels.

I too have both Fibro and ME/CFS and have done since birth of last child in 2002, where I contracted a hospital infection.

Took 10/12 years to get a diagnosis and since have developed widespread osteoarthritis, as well as gaining an enormous amount of weight due to mobility issues.

I truly hope that you are recovered.

That's good news. 👍

I have a friend who likens her long covid to ME, it really wipes her out. So it would be great if these illnesses could be reversed never to appear again.

Meant to say that I truly truly hope you have somehow shed this!
🙏

My husband has had this just about as long. He has been on a "weary patch" on an off for about eight months.
How lovely to be full of beans!
🌞

Well - I am also a sufferer and I’ve learned that when I experience that energy boost I invariably over do it and then crash. The trick I think is to continue to be sensible. Easier said than done when I feel so full of energy.