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

[Psm92]

Just that really.

You might have more luck on the Health board OP 👍🏼

Yes, sort of. I know my limits and stick within them. I haven't had a bad crash in a while and don't need prescription meds to manage symptoms.
My life is far smaller than it was before I got ill, and I only go out a couple of times a week, usually when I can get a lift.
ME/CFS is an awful condition and takes quite a bit of getting used to, but if you're disciplined you can manage to do some things without making yourself more ill.
It took me years to learn that lesson.

Following to hopefully get some advice.

newly diagnosed with poTs and me/cfs.

currently waiting for a referral to a poTs specialist. Rang them today to see if they had received my referral to be told the waiting list is 1 year!! Think I’m going to go private. As I can’t carry on like this for another year x

Had mild CFS for 15 years. Not managing it that well TBH but know my triggers by now. Spent the first few years very angry at it and trying to get help from GP etc but really it's working out how to live with it and manage day to day. Did loads of research and used support groups at the start but not focusing on it too much and getting on with living with it tends to work for me.

Joining for support.

I'm not sure what counts as mild ME?

I think mine is moderate, recently diagnosed. Still very much in the angry phase you mention @Stressybetty and don't really know what I'm doing.

Up & down week by week, taking each day as it comes and doing my best to pace etc etc 😐

Yes. What are you after OP?

I wasted a lot of energy and time at the start trying to get help from the GP and getting fobbed off. Eventually got a diagnosis of post viral fatigue and told rudely that there was nothing they could do for me. 4 years later I saw a different GP and was referred to a consultant and diagnosed with CFS. Attended an NHS cfs group run by physiotherapists and a psychologist who gave advice on pacing etc. Psychologist told me very patronisingly that it was all in my head and I was suffering from repressed grief from my DM dying. My DM had died 3 years after my symptoms started which I pointed out only to get a head tilt and fake sympathetic smile. Haven't put much faith in the NHS since funnily enough although they may have improved their training since.

YABU

Yes, I would now consider myself to have mild, well managed symptoms finally after 2.5 years (Long Covid related ME/CFS). It took me 10 years after EBV to be fully recovered from my previous experience of ME/CFS because I didn't know to stop and rest which made it worse and also had a lot more support this time around.

I consider myself to have very mild symptoms nowadays. Was diagnosed over 20 years ago when I was a teen and it was bad for the first few years.

Nowadays I just have to manage my ‘load’ - early nights are par for the course. I can’t plan back to back activities at the weekend as it’s just too much. I tend to pick up illnesses more easily than others and find it hard to shake them off so have to take it extra easy when that happens.

Conversely, I work almost full time in a demanding job and have young children at home. I didn’t imagine I would ever be able to do that when I was a teen.

Not me, but we are helping our 16 yr old ds with ME/CFS. He has been on a reduced timetable at school this last year and is taking his GCSEs now! We had problems with school trying to push him too hard and he's had more crashes than he should have because of this so we put our foot down and now he's in the exams he doesn't need to go to school between them so he may have the energy to get to all the exams. (His school has the pupils in full-time until last week of exams)

Despite school pushing him too hard he's done really well, largely thanks to PAEDS for ME/CFS at Bath hospital - had online appts this last year - him being careful with his Red energy using activities, and us pushing back against the school and standing up for him (we've been really close to making formal complaints over the last few months.)

Anything you need help with? Any info anyone can give you?

@HermioneWeasley not sure really. Just so depressed at having to ensure this and maybe wanting to hope it does get better for some people, even if fully recovery is unlikely.

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

@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 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!

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.

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.

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 :/

Sorry that should say ME/Gilbert's crash

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 😕

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.

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

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

@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 😭

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