CFS/ME/Fibro/spoony support thread 2

[LivingInMidnight]

Old thread here

about autism but the scientist is also working on similar for CFS as far as I understand it

Q&A with Naviaux

Hi can I join in? HMS(or EDSIII, waiting on official decision) here and really struggling! 23, working a 47 hr job and it's killing me!! I'm exhausted all. The. Time. And generally in bed by 7pm which is a shit way to live when you only get in an hour or so before that.
I've no children yet so I have no idea how I'm going to cope with that and it scares me that I won't be the hands on mum I always wanted to be.
Got an appointment to see a specialist in London in a couple of months who should be able to formalise and clarify my diagnosis even tho this has been going on my whole life, and been bad for 6 years so I'll hopefully get more answers then and in the meantime try not to break myself again!
Just shit really isn't it? 😂

[[https://www.omf.ngo/wp-content/uploads/2017/05/Naviaux-CFS-For-CDC-Talk-5-25-17v3s-2.pdf The Metabolic Features of Myalgic
Encephalitis/Chronic Fatigue Syndrome (ME/CFS)]]

I just saw this on twitter from the IiME conference

Gene study can be done from anywhere in world

not sure whether to laugh or cry about this, but I suppose it does mean I can duck out of family events whenever i want now - DD and DH went to see the ILs recently, I stayed at home (as it was the evening, and I was tired), and obviously they asked how i was. DD tried to explain brain fog to step MIL, who wasn't getting it at all, so DD said "its a bit like Alzheimers" .

That combined with being told yesterday I need hearing aids makes me sound positively geriatric (I'm 46) .

We're taking bets on how long it takes to get round the rest of the family, and are plotting the route of the gossip to work out when it might get back to us first. Obviously I'm writing it all down so that I don't forget . We don't think anyone will ask me directly, but DH is expecting a few "we heard the news about MyVisions, it's so sad" type phone calls (some will be genuine, some will be faux-sympathy).

How do you explain brain fog to someone who has no idea though?

Someone actually asked me to describe it on Friday and I really struggled. I think I said something about cotton wool and then googled it in the end . Unfortunately, the reason they asked was because I was going to try and explain it to someone else tomorrow, which I completely forgot about until now!

Some days alzheimers doesn't seem as far off as I would like!

Can you donate to this?

more information

This primer, written by the International Writing Group for Pediatric ME/CFS, provides information necessary to understand, diagnose, and manage the symptoms of ME/CFS in children and adolescents.

www.healthrising.org/blog/2017/09/08/molecular-underpinnings-mecfs-explored-open-medicine-foundation-symposium/

My wife has recently grown unbelieving of the fatigue, tiredness, time sleeping, exertional malaise and pain my M.E causes me, despite my condition rendering me bedbound and in constant pain taking a massive dosage of pain meds for 8 years.

It's hard to cope with, for her me being like this I guess, and for me seeing her reaction. Are there any resources/YouTube links for non-sufferers educating how M.E affects us?

I know someone on forums.phoenixrising.me/index.php made youtube videos like that a few years ago.

Thanks for that. It's been so tough recently, it's hard enough dealing with all the problems M.E. causes, nevermind having to deal with disbelieving family too.

Also CFSKate, you do an absolutely wonderful job on all these CFS/M.E threads, just wanted to say a huge thank you.

DD2 is 19 and has HFA. On top of her 'normal' autism she has something else going on. Saw s locum GP a month or so ago who suggested CFS. (Routine bloods all normal).

She does seem to fit a lot of the symptoms. Or is it 'just' more of her autism? How to tell?

And what do we do next? She's really not coping with life at the mo. Spends every minute she's not at college or work in bed and feels ill.

College is 2 full days a week. Plus heavy coursework.

I've suggested stopping work (she does 3 x 4 hour shifts) but she is so desperate to be 'normal' and work is a really big part of this. It's her independence. It's when she gets out of the house (she has no social life at all).

I've looked at pacing. But when a college day is 8 hours how would she do this?

I'm floundering. Any idea what to do next?

(Copied this from my thread in chat and CFSkate linked me to this one. )

(copied from my thread in chat until I was linked here)

orning all.

I went to see the specialist on Friday and have been diagnosed with M.E. It's quite a bit to get my head around in so much as it's an illness but no cure/relief in forms of medication.

I've already come up against someone saying it's not that bad. You go to work, you run etc.... Yes I do but it knocks me out for some time after.

Do any of you suffer with ME? I would consider it to be the mild form but simple things can exhaust me. On Saturday we had a lazy pj day at home whereby I spent most of the time dozing whilst DS was playing/watching tv. Yesterday I did a 20 minute walk in the morning and then took DS to the park in the afternoon. I was in bed for 9, and feel like I've been hit by a truck this morning

Hi everyone I have only just seen this thread. I am 36 weeks pregnant and have had M.E since I was a teenager
I wondered if there was any mums to be out there struggling to cope with being pregnant with M.E and how you dealt with having a baby .
Many thanks x

www.independent.co.uk/news/long_reads/why-patients-me-demanding-justice-millions-missing-chronic-fatigue-illness-disease-a8133616.html

Crap, posted new thread then remembered this awesome thread. Haven't been on MN for months..

I've had ME for some 10 years (although never been tested for Lyme Disease) and my GP Practice is very supportive, although there is one senior GP who wants to push me towards Graded Exercise Therapy and CBT.

I've done so much reading and research in to ME and what works/doesn't etc., and common thoughts is GET makes things much worse - irrespective that I'm bedbound/wheelchair using.

I could just laugh in her face, any better suggestions on how to politely refute her suggestion?

Hi SteX

You could show your GP this article from the ME Association
You are right that GET is contraindicated in patients with severe symptoms.

www.meassociation.org.uk/2017/06/me-association-review-getset-fails-to-demonstrate-get-can-significantly-improve-physical-function-28-june-2017/

Fab butterfly Said GP isn't my usual but this will be helpful next time she attempts to interfere!

The Independent article @CFSKate linked is great. However I really doubt, especially in this country, it will have much impact.

There's only so many times you can be wheeled into a docs office to be given "that" look before being fobbed off.

That said, my GP of some 7 or 8 years has been happy to prescribe medications such as Pregabalin, Tramadol, occasionally Oramorph, condition is listed on the online service they use, on my medical record, as "C.F.S - Chronic Fatigue Syndrome".

How do I get stronger painkillers, better meds? How do I have that title on my medical record changed to M.E?

Hugs to everyone x

I'm sure this has been linked in the past, interesting nonetheless- www.virology.ws/2017/03/23/an-open-letter-to-psychological-medicine-again/

My fucking fuckity fuck.

I've just seen a different GP for the first time, my usual fab was booked up.

I'd gone about excruciating abdo pain (related to gallstones), nothing about M.E.

Rolled in, in my wheelchair to be spoken down to, told I need a holistic attitude, need referring to the pain clinic, and to CBT.

He didn't even fucking examine me properly. Older GP, Senior at the Practice or I'd be writing a complaint letter rather than this post.

I'm just...astounded. He wouldn't even issue my repeat prescription despite my explaining the hell having to come back out tomorrow/Monday would cause.

Sigh.