Recently told I have CF/ME - some questions..

[DaveT81]

Hi guys,

So I've spent almost 2 years going all around the houses looking for answers, and last week I was told by a consultant that I fit all of the criteria and he's referring me to the CF service.

This was a relief but I still have some - seemingly - unanswerable - questions.

First of all, what caused your CF/ME, if you're even able to identify a cause?

Secondly, does anybody else have a really disabling breathing issue? That is my main, presenting symptom and the Dr was a little baffled by that. I have foggy head, weak limbs, sheer exhaustion, unable to get out of bed for 45 minutes in the morning, blurry vision, tingling in hands and feet, poor memory and concentration (and also digestive issue which are unrelated), amongst many other small symptoms but I have a 24/7 breathing issue that started last July and has gotten worse. It often feels, after a long day, like my chest/lungs/resp system has just kind of 'given in'. And it's particularly bad after exertion and when I try to sleep on my left or right side. It often feels as if all of my organs are just slumping over to one side.

Thanks for your responses, guys. Hope you're doing well.

[Hidden]

OH man its all a huge learning curve and there are so many things that can happen no one person is the same as the next.

I had a thing where it felt like I wasn't taking in enough oxygen - my lungs were moving in and out but I needed to take deep breaths to make me feel as if I was getting enough - a little exploration on line taught me there were many others that experienced that.

I can tell the exact hour I first became unwell with a mystery 'virus' - all the symptoms of acute ME but no knowledge to diagnose. Fast forward a decade or so of tiredness put down to life and a slower onset of ME symptoms leaving me flat on my arse for years.

If you can dig out some of my older posts I have been given good advice that has helped - gluten and dairy free, meditation, Vit D supplements and Omega 3 oils with a good diet and plenty of rest. All these along with some other supplements along the way have gone a long way to getting me back to what was normal.

[DaveT81 in reply to Hidden]

Hi raff, I am going to browse through your earlier posts now and see what I can find.

I've been all around the place, private doctors, specialists, scans, MRIs, everything you can think of and none of them could nail anything down.

The CFS doc I saw last week basically confirmed that, in his professional opinion, I tick all of the obvious boxes bar the breathing issue. Hence, the extra heart tests. I also have a history of afib.

So you had a 'virus' too? I only recently remembered that about early July last year I came down with this so-called virus too, I booked some hols from work but carried on my training routine (training for 5k) and that's when I first noticed the breathing problems. Couldn't get a full inhale, not enough oxygen and felt like I was constantly short of breath. Been the same ever since, although it worsens a lot of the time. Today is a bad day. But it may be because I 'overdid it' a few days ago.

So what are your other symptoms?

Mine are all of the above and many more besides, as I said, I have a terrible memory right now so I've no doubt missed all kinds.

I've been dairy and gluten free for about 9 months now, I try to meditate and do yoga about 6-10 times a weeks (small sessions at home). I take vitamin D occasionally but will start taking it daily and I'll definitely look at Omega 3 oils as well. One of my biggest problems right now is that I'm struggling to sleep so much. So resting is an issue haha. When I DO manage a few days of good sleep, even 6-8 hours a night, I feel much lighter and don't feel that awful, horrible 'hungover' feeling as badly.

[Hidden in reply to DaveT81]

Yeah I hate that hung over feeling , I can't drink alcohol any more but I get the joy of the after effects. I get everything from Brain fog, sleep paralysis confusion and that fucking constant exhaustion that is always biting at your heels, clumsiness and everything in between - although a lot less often now a days thanks to taking things at a much easier pace and resting much more than I would like.

To add insult to injury I have RLS which makes sleep at night a problem and it is much more difficult dealing with the RLS since the ME took hold. I used to have a memory too, although I've forgotten what that was like On the plus side I lost my career so don't have to worry about work Oh the joys.

[Hidden in reply to DaveT81]

I've beenthinking, (takes a while nowadays), have you come across Dr Weir? He's a specialist in London although does clinics in other areas too. He is very good and understanding and takes a through approach to the problem. I've been very lucky in seeing him and if you've been through a few Drs and are still looking for answers, (although as fibrofoddy says they haven't a clue what causes it), he's worth a try in my humble opinion.

[DaveT81 in reply to Hidden]

Thanks raff, I will check him out. I've been referred to the NHS CFS service and all I'm pencilled in for at the present time is a group session of some sort in November. I'll check him out and see if I can find him somewhere near by.

[Hidden]

Hi

I don't think they know what the cause is.

As for breathing, I have had similar problems. I put it down to a combination of pollution and hay fever. The no. of vehicles has increased whilst greenery has decreased. I can even see the smog when I return from cleaner areas.

Wishing you well.