To ask for ME/CFS/Long Covid recovery stories?

[Psm92]

Been dealing with Long Covid for 2 years now. I'm not severe but bad enough that it impact every part of my life. Always sluggish, short walks still exhaust me and every task or activity requires a careful calculation of its energy cost. So tired of this, so down, just need some hope. I miss the days of just strolling through a park at a leisurely pace, planning city breaks, going shopping, days out. I'm only 29.

@Annaissleeping Thanks for your message, and so glad you recovered.

I guess I'm inclined to feel a bit skeptical about that video. She talks about being able to climb that hill at the end and therefore just "knowing" she was okay as she could do it, and didn't get symptoms. But I could probably climb a hill, now, if I wanted to, and not feel too terrible, but the day after I would crash horrendously. Her account doesn't really accord with the post-exertional malaise I associate with ME, and the buildup of fatigue.

Have you been tested for POTS? I have POTS (not Covid/virus related) and my cardiologist believes that the development of POTS, triggered by the virus, underlies many cases of long Covid/virus-related ME/CFS.

Your description of careful energy calculations to avoid crashes and severe post-exertional fatigue are very characteristic of POTS. You can very easily assess for yourself whether it's worth speaking to your GP for a cardiology referral by taking your pulse at rest, then 1, 5 and 10 minutes after standing (try to stand still!). In POTS the heart rate will keep increasing and you will may start to feel quite uncomfortable and unwell (please sit down again if this happens or if you feel faint). If your symptoms seem to match those of POTS then see your GP regardless but a lot of people find this test to be useful when asking for a referral as GPs often aren't very knowledgeable about POTS.

I've had POTS probably my whole life, secondary to hypermobile EDS, but was only diagnosed a few months ago. I'm not well enough to work at the moment and will be taking a few months off sick (I only work very part-time already) to try to get settled on medication and start physiotherapy. But there is hope, it's not curable but it is treatable, and many people with POTS make a good recovery.

Some resources:

www.potsuk.org/

www.standinguptopots.org/

@Psm92 I was also seriously considering getting a wheelchair at one point. There was a time I had no idea how I’d make it through an airport but I did! I was totally fine. Sometimes I feel so awful and dread something that’s planned the next day. Sometimes I cancel it. Sometimes I’ve pushed through and it’s actually made me feel better and improved me. But as I say it’s a gamble and only you know whether you think you could risk it or not. Now I’m pregnant I wonder how I’ll manage days out like legoland/Alton towers and wonder if a wheelchair will be needed. But then I remember I’ve had a big day out with my husband to an attraction and I was fine. You jus need to see how you are at the time and reschedule things if need be. Hopefully you improve and get to a point where I’m at where yeah - sometimes I’m really crashy and bedbound and can’t manage anything and my husband even takes me to the toilet. But then there are other weeks where I live a normal life and manage day trips and long walks and going to work in the office. It’s a balancing act. If you’re sensible and don’t push too hard, it evens out and although crashes and bad patches do happen, you bounce back and generally feel well most of the time.

@SwordBilledHummingbird Sorry should have said, yes I was diagnosed with PoTS! I take medication for it, which helps the PoTS symptoms and means I can at least stand up and walk around without feeling faint, but unfortunately it deosn't help the fatigue.

It's probably worth going to see your cardiologist again anyway, or finding one who is a POTS specialist, as a lot aren't very knowledgeable and patients are left without adequate treatment. I'm currently taking Ivabradine, Pyridostigmine and Midodrine and will be starting on Low Dose Naltrexone soon but have to come off codeine first (I also have chronic pain so this is not fun!). I've also had IV fluids, which helped a lot but the effect doesn't last long. Physiotherapy is enormously beneficial and I'll be starting in the New Year as I'm not well enough to actually do it while I'm working... vicious circle! If you've already tried all these then I apologise for assuming but, in my experience, many POTS patients are diagnosed and treated by cardiologists who aren't fully up to date with all the latest research.

Have they suggested you try conservative management such as extra fluids, extra salt, class two compression stockings?

I sympathise enormously, it sounds like I was very similar to you at your age, ie. I worked full-time but flexibly/at home at lot but still had a very limited life outside of work due to fatigue. Because it went undiagnosed for so long, I'm now 42, I work only two days a week, spread out over four days and still spend most of my time very unwell. But I have a great cardiologist now and do have hope that some improvement is possible. Ultimately, there is a lot of help available for POTS but it's not always easy to access.

I got CFS after a suspected viral infection when I was 23. I was diagnosed as 'moderate.' I was severely debilitated - my joints and muscles were painful, I had headaches, I couldn't eat, couldn't lift my arms to wash my hair or bend over to pick something up. My lips and nails turned blue. I felt like my body was made of lead and I was walking through molasses.

It lasted 2.5 years, until I got pregnant with my first baby. My symptoms vanished as soon as I hit the second trimester. Thankfully, I made a full recovery. It makes me believe it's an autoimmune reaction, as we are immunosuppressed in pregnancy.

Good luck x

I too used to collect recovery stories about ME/CFS, in my early years of it.

All anecdotal, but where people did improve there seemed to be a theme of it happening round about the 2 year mark – sometimes back to normal, sometimes to a plateau.

That seems to fit with what ganachee was saying.

@Psm92 you can get a free trial of the Curable app but have to pay to get full content.

However the podcast (recovery stories, mostly about pain but also chronic fatigue) is free. I get it on the Stitcher app.