Anyone here with mild, well-managed ME/CFS?

Thanks :) it’s been about 3 years since I first got ill and I was pretty much housebound for the first 18 months-2 years

@Psm92 yes, exercise is a vital part of my management. There have been times when I couldn’t have done it, but as part of my ongoing management it’s really important. I hate it though

I have/had Long Covid/ME-CFS and was bed bound for 6 months then house bound for a further 6 months. More than 3 years later I consider myself in a good place - I work part time (as I did before I got ill), have family responsibilities and have tentatively started C25K. I'm not exactly high energy but doing okay and continuing to build on more I can do.

Please please do not give up hope - think this is so important for recovery. The official statistics are a bit gloomy but there are plenty of word of mouth success stories out there. I also recommend Suzy Bolt - she has a great FB group, loads of valuable info, and also have a look at Raelan Aigle's YouTube channel.

@Crayfishforyou I remember you from the LC thread - good to hear you're doing okay but sorry about your flare up- hope it passes soon.

Yes, I was “moderate” (it didn’t feel moderate!) when I was diagnosed but am minimally affected these days- work 28 hours, parent, manage trips out and walking, can’t push it too far though. I don’t have a lot of advice, I rested a lot, did very very gentle CFS focused yoga, and very slowly built up my walking. It’s a horrible horrible illness

@Psm92 i drink about 3 litres a day and that’s without a couple of cups of green/herbal tea. So I think that’s probably enough. I’d never be away from the toilet 😂

@LizzyLovesTea omg thank you so much for all this advice. I feel like im living in a black hole at the minute. I’ve never really bothered with depression or anxiety but I’m so down at the minute.

my salt intake and water intake has always been ok so that’s not something that I can improve on.

but will have a look the other things and get in touch with Emily. And ring my gp.

It’s the hidden illness that no one else can see, that gets me down. I feel like no one understands. It’s like they just think
im lazy or a slob x

Also, just to mention that Suzy Bolt’s Rest, Repair, Recover programme has been great - it’s a really gentle yoga, relaxation and rehab programme with zoom classes and catch up videos. Her RRR classes are basically designed around the exercises that help POTS and suitable for CFS. Not too expensive either!!

I’m so sorry. It’s an awful illness and so hard to cope sometimes, especially when you are stuck on a waiting list.
my GP wrote me a referral letter, then his secretary rang me up and talked me through booking the right kind of appointment on his website. It’s important to book the kind where he can write a prescription- he also does some advice only appointments. If you contact the York Cardiology phone number you can probably get advice.
When he recommended meds for me to take, my Gp prescribed them for me which means I don’t have to pay for them privately, which is a big saving! But not all GPS will be happy with that.
One thing to consider is that of all the drugs that can help POTS, one is Beta blockers which GPs quite frequently prescribe for all sorts of things. So while the other drug options can only be prescribed by a specialist, if you don’t have a reason to avoid beta blockers, you might be able to get started with them.
I found that salt (only for some types of Pots!!), water, rest, pacing and ccl2 compression tights plus an abdominal binder make a big difference to my symptoms. Avoiding sugar helps me too, and after a big meal I usually feel worse but I don’t worry about it too much as I know it will get better!
I’ve also been getting help from this lovely exercise physiologist Emily. She offers a free advice session so it could be worth booking one in… she has Pots herself and is really expert at non drug ways to manage it.
https://www.exphysem.com/home

@LizzyLovesTea yeah I’ve been doing some research about going private and dr Gupta name came up.

when getting the ball rolling to go private where did you start? Did you have to go through gp/hospital or just ring Dr gupta office??

sorry if I sound stupid, just never had to sort anything like this.

and I definitely can’t wait another year, I’ve had such a bad flare up this week. I actually told my husband I’d rather be dead then live like this anymore 😭

@LizzyLovesTea I love his YouTube videos- what a lovely genuine patient centre manner he has- very easy on the eye too !

@Maraudingmarauders I'm so pleased for you - I'd love so much to get to that point!

Yep. Suffered since I was 15, had a real low patch during and after my MSc. Was on gabapentin for 8 years.
Now I work full time, swim a few times a week and can socialise at the weekend (I'm 33!) And I'm off all medication.
It's been a tough old ride and I'm constantly checking in on myself. I know my limits and I nap regularly. Weekends are a mix of activity and afternoon naps. I can't run, or cycle or anything too hard on my joints but swimming I find soothing.
I have patches where I struggle, and I find 2-4pm at work the hardest. I still suffer with painful muscle spasms but I'm happier now I'm off medication though it was essential at the time to get me through.

I seem to have lucked out with the NHS. I already suspected ME, but my gp raised it independently and referred me to a specialist ME CFS clinic for diagnosis. Only issue I've had is the wait times which have still been pretty good for the current state of the NHS (about 6m from referral to appt).

I start a programme of management sessions with the clinic in a few weeks and in the meantime have been trying to adapt as much as possible. I do my best at pacing but every time I think I've got the hang of it a crash appears.

For me, the main symptoms are fatigue (especially PEM) and muscular pain/stiffness - although I'm sure half of that is down to inactivity. Phyiscal weakness...When I crash those symptoms are exacerbated...Some days I can barely wobble to the bathroom. I've developed sensory issues when I'm tired, too. Concentration is shot a lot of the time.

I nap a lot, trying to get my naps down from 2.5 hours. And when I'm feeling better I try to incorporate a couple of gentle walks into the week. My life has become so small and slow, I used to do so much.

Would love to date but I don't find myself much of a prospect these days 😕

Sorry that should say ME/Gilbert's crash

How do you know what is an me/CFS crash? My adult child also has me/CFS and Gilbert's syndrome. Both were diagnoses at the same time but we were basically told not to,worry about the Gilbert's syndrome as most people only find out they have it by accident :/

Yes, kind of - I work, parent and just about have hobbies (the more social ones lose out to the fatigue more often than not). Since I got covid I’ve had more symptoms though.

I have had long covid/cf for 3 years now. It is generally something i have to bear in mind, but generally it doesn’t bother me day to day.
I am having a flare up at the moment. I feel all swollen inside, my armpits ache, i have tinnitus and feel very dizzy. I also get horrid chest pins.
As long as i do nothing for a few days it will pass. In the beginning i didnt feel it would ever end. But i know it will now.
Stress often causes flare ups.

I have pots too. Highly recommend Dr Gupta in York if you want to go private - York Cardiology. I would have waited more than a year on NHS but going private meant it could get started on some really helpful meds. Best £200 I ever spent! I assume you’ve discovered that the PotsUK website and compression tights?? There are some great Pots specific Facebook groups too which are really helpful.
Hope you get some treatment and improvement soon!

@Psm92 I’m sorry to hear you’re having a hard time. Being strict about getting enough sleep is absolutely essential for me and I find acupuncture helps. Exercising is also important and I have a completely unvalidated theory that building muscle helps with energy.

I had CFS many years ago - it gradually improved but I also have Gilbert's syndrome which also causes extreme tiredness. I try and avoid late nights and getting overtired - I'm on iron and b12 tablets permanently as I don't absorb either properly. The Gilbert's syndrome society recommended taking ashwagandha and rhodolia supplements and they've been really helpful - they seem to prevent me from having the major Gilbert's crashes which I used to get for no particular reason - it means I can now exercise regularly which is really helpful - sometimes a run would wipe me out for weeks on end previously