CFS/ME/Fibro/spoony support thread 2

[LivingInMidnight]

Old thread here

Just bumping this thread so everyone can find it. You can tell this is a thread for people with fatigue .

undark.org/article/chronic-fatigue-graded-exercise-pace/

If you donate to the OMF before 29th November, your donation will be tripled.

undark.org/article/chronic-fatigue-graded-exercise-pace/

Thanks again CFSKate for updating us with links, especially this one, above. I am housebound (3 years +) with sudden onset, severe ME/CFS and follow everything I can here, when well enough to open up the laptop. Rarely post. (Saving energy to get upright and put food in microwave etc)

This link -although LONG- is fantastic and I will be sending it to everyone I know to explain why I had to give up my beloved career, can't keep in touch and why GET & CBT is not helping me.

It's so good, I'm going to add it again.

undark.org/article/chronic-fatigue-graded-exercise-pace/

While I'm here, just wanted to send love and to all those with ME/CFS/Fibro also reading/following without energy to post. We are not alone. Don't give up!

Have to add it again....... undark.org/article/chronic-fatigue-graded-exercise-pace/

Sorry if it confuses everyone. Don't forget to read the comments underneath the article too.

Bumpity Bump.

PLEASE READ THIS IF YOU KNOW SOMEONE WITH ME/CFS

undark.org/article/chronic-fatigue-graded-exercise-pace/

daisychicken thank you so much for the circles picture.
I wanted to update and need to share, hope you all don't mind. I am back at work, 2 full days and 2 half days. On the half days I'm in bed by 5 and on the non work days I struggle to get up for more than 4-5 hours at most. I'm hoping this is a kind of temporary adjustment period. I feel so lazy. I've recently had a challenging/ triggering time with some friends - does anyone else find being emotional really depletes you, energy wise? I'm a bit low, isn't that pretty normal in this situation? All the CBT look-at-what-you-can-do stuff seems to go out of the window and I just see my adult life diminished to a tiny corner of the full screen version so many take for granted. Ugh. Sorry for the grumbling.

Hello everyone
I will read the article later when I have more
Time...
I have come the realisation I will have to give up my job

• it's only 8 hours a week but I really enjoyed it but I'm so so exhausted ATM

Dhs work pattern and work trips mean I need to be ok Ds1 (13) is pretty good but ds2 (8) obv needs a lot more input I'm resigning at the end of this month and will for finish mid Dec It's the right thing to do I think Doesn't make it easy though Just trying to recover from a virus and hoping that the HRT I've just been px helps I have another sleep study this week so will see what that brings! Love to all x

Hi Eliza and Badders and anyone else following.

I hear what you're both saying about work and it's depressing isn't it? I'm sorry you're resigning Badders, I've been following your battles for a while. I trained hard for my job and I absolutely loved it. I even dragged myself upright and got back to work very part time in the first year I was ill. I thought it would save my sanity, but it turns out this was the worst thing I could have done. I got worse and now two years on am now completely housebound (bar monthly hospital appts). Hooray for laptop & MN propped up on horizontal body

My pride, my sanity, my urge for normal-ness, my drive, my life plans, my new marriage, all drove me on. I refused to accept I was ill. Now, I am on basic PIP (just scraped in!) have been medically retired (teeny pension) and financially dependent on new husband .

I am still going through the cycles of grief trying to accept my new life, which is oh so different from my real current life. In the past I have defined myself through my career and achievements (small ones!) so now I have to re-think my identity. I don't want to be remembered for being the grey faced, anti-social hermit in bed/on the sofa.....

I think we just have to re-set our expectations, try not to be hard on ourselves and value the tiny things in life that we still have

When I have enough energy, I need to talk POTS too. No-one is interested in referring me for a assessment. Can you have POTS part time? My heart rate rises from ave 85 (rest) to 100-155 on standing/basic care and food prep, just not all the time. Just invested in a Polar. It's fantastic. I'm sure I meet the criteria for POTS.

Keep going people. Lean on anyone that offers help. And send out that undark link. If everyone we knew could sit down with a and read it right through to the end (+ comments) we might find we were being judged less and find ourselves less isolated.

undark.org/article/chronic-fatigue-graded-exercise-pace/ oops, added again

....if anyone is passing, please put the lights on and switch on the kettle. I'm not sure I can cope with more tachycardia today......

Hello lovely
Well I am luckier than a lot of people
I have a lovely dh and 2 great kids
The money was nice but the bailiffs won't be at the door if I stop
I'm more fortunate than most in that regard
Ive done well, really...it's only the past week I've had to have sick days since jan but it's not sustainable
Not helped by my peri menopause which has hit me like a freight train nor my longstanding back problems from when I was of with ds2
Oh well
Dh and I might see more of one another!

I agree Badders. This could be the beginning of a new beautiful life for you and your family Enjoy what you have.... and don't let this illness grind you down. It's a bastard

It is!
Ive read the article now
I agree so much with the reporter - I listened to one of the authors of this report on the Jeremy vine show some time ago and was swearing so much I decided I needed
To turn the radio off before I ripped it out
I am old enough to remember the articles about "yuppie flu" and "lazy malingerers"

have never bought the times since<
So little research bee done, so much Infighting in the few support groups....it's a mess really
My own dr thinks I'm having a relapse - I'm still in denial about this! - but I'm really not sure how much is cfs and how much is peri (many symptoms are similar !!)
All I know is since I turned 40 it's all gone to hell

Badders

You've summed up how I've been feeling the last 3 years

I agree, turning 40 was a bastard year!

I'm less angry now. Until ME/CFS is up in the news again and well-meaning friends/family send us links to "Be more positive and exercise more" headlines. Oh Fuck Off!!!!

Am struggling at ME clinic too. My treatment? Have a guess?....

Graded F'ing Exercise Therapy .

Have had a number of relapses since beginning treatment. Though to be fair my physio is fantastic. She has reminded me that emotional situations are just as draining for us - answers someone upthread...but brain fog and confusion prevents me from remembering who.... sorry

Dang. Also forgot to add this link again. Bumpity Bump

undark.org/article/chronic-fatigue-graded-exercise-pace/

IF YOU DON'T UNDERSTAND ME/CFS, JUST READ ONE ARTICLE/COMMENTS.

MAKE IT THIS ONE!

And for you Badders coping with ME/CFS, Peri, Back problems et al plus a family. Take it easy . Keep pushing and you'll end up horizontal for most of the day, without being able to enjoy them My noise sensitivity severely restricts visitors/normal life in house.

Sadly my 40th year includes losing my beloved dad very suddenly and my mother becoming very ill too
Add to that emergency surgery for me (gallbladder) and my son (adeno tonsillectomy) and I'm sometimes amazed I'm still standing
But I am
They say what doesn't kill you makes you stronger
Bull
If that was true I'd be able to bench press a Buick

Oh my. Sorry about your Dad. What a year! I often read a year or so of crap starts it.

I celebrated 'that' birthday, got married, went on honeymoon, finished work projects, got flu, misdiagnosed in Neurology dept, three miscarriages, diagnosed with ME/CFS and lost some friends/family through lack of understanding and judgement in the meantime My GP didn't really take me seriously and work wanted to know when I'd return. (I couldn't stand). Horrid time. It did get worse too. (No energy left to explain)

We're survivors though! ....even though getting up from horizontal to standing raises BPM to 150

Gosh that sounds rough! I had mc too - horrid
Ah yes, the friend and family thing! I could write a book, I really could!
Friends dropped me - inc my bf just before my wedding - I lost jobs, was told to my face that cfs didn't exist by a dr...I could go on
So you have pots? Nasty
I have AF which I now think is peri related - in fact me being blue lighted to resus one
Night with a heart rate of 270 was what started my annus horriblis
I also have lots of digestive issues since having ds2 and my gallbladder out - but I don't help myself much there tbh
I eat what I can manage and that's not always then"good" choice
My life is already quite restricted - I'm wary of adding more

sending a hug

And your HR of 270 beats my paltry 156 earlier! AF is way more scarier than POTS.

You win! though there are no winners here, hollow laugh

I am remembering bits of your gruelling story now Badders. So pleased I've managed to post eventually. It means I am real I wonder how many others are out there reading and not well enough to post?.........

Waves to all while I'm here [waving hand emoticon]

Would love to chat all night. Have completely smashed my energy envelope now. Oh well. It was lovely while it lasted. Speak soon Badders

Speak soon
Take cAre x

Bumpity Bump for evening crowd (unless you've already crashed and burned)

IF YOU DON'T UNDERSTAND ME/CFS, JUST READ ONE ARTICLE + COMMENTS.

MAKE IT THIS ONE!

undark.org/article/chronic-fatigue-graded-exercise-pace/

Hi everyone. Fallen off my TIO. I'm afraid I've come back to moan. In pain, argh! I was doing reasonably well, but got a stomach bug 1.5 weeks ago. It appears to have reset my body into the issue I had last year where eating gives me pain. Stomach bug long gone, and I actually ate a half-way normal diet yesterday and today -- bad idea. I think I need to go back down to 1K calories or less a day until I can get this sorted. But that's not enough to keep me going!

And I've just started a really intense two weeks at work. On my feet for 4 hours straight this afternoon - or meant to be - I stole someone's stool and sat down for the last half hour or so.

And there's construction, and tomorrow DH is going to a thing, so I have to get DD home on my own -- today I called him for a ride as I couldn't face the walk/bus/walk with her, but tomorrow we'll have to do it. Because of the construction the walk to the bus will be twice as long as normal.

Sorry this is all over the place and not making sense.

to others also not feeling well.

Oh, and I've also had trouble tracking down POTS. I definitely meet the criteria (did I post upthread about the specialist's visit? where he basicaly didn't even want to look at my evidence of that?). But GP has given me the go-ahead to eat high-salt, and that plus drinking lots of water and strengthening my lower body is all I really want to do right now anyway. I'm really suspicious of any new meds given how bad the stomach one last year made me feel.

Dreading the gastro appointment, though. I was on track for not losing weight until this bug. 6 pounds down in the last week. Although maybe he'll take stomach bug as an excuse. I totally don't see myself being able to eat enough in the next 4 weeks to gain that back, given my body's response now.

Okay, all over the place again. I should just post.

Hi murmuration

We all need to have somewhere to moan. I just wish we all had enough energy to support each other and reply when we really need it. If I ever win the lottery, I'd establish an ME/CFS 24 hour support group. A helpline that would send out a nurturing reliable, non-judgemental person, a listening ear, a food hamper with nutritious ready made suppers, a babysitter, someone to fill in those dratted benefit forms, a communicator who would speak on your behalf to explain to friends and family why you've cancelled again, or fallen asleep, or couldn't quite stand up to make dinner, someone to tidy and clean up the filthy house, walk the dog, organise birthday cards and gifts etc. I could go on.......... I don't even have a dog but you get the gist.

Did you manage to get your DD yesterday? I don't know how you manage a family and working too. The gastric stuff sounds a challenge. It does seem that any little thing can trigger a relapse. If we were dogs, I'm sure I would have been pts by now

I do remember your POTS post had to go back and re-read and I know exactly how you feel. I second Living too in that so many of us leave medical appointments feeling so much worse. Why did they not do your POTS assessment? I've read that 50% of me/cfs people have POTS, many are undiagnosed and many could be treated with medication. So WHY aren't we screened?

I have also kept records and definitely qualify for it:

To be given a diagnosis of PoTS, a person needs to have:

A sustained increase in heart rate of greater than 30 beats per minute within 10 minutes of standing

www.potsuk.org/diagnosis

After 3 years of being virtually housebound I have bought a Polar monitor. I am still following very gentle GET and am active in small chunks throughout the day, with LOTS of rest. Getting dressed/standing up/clmibing stairs/5 min walk all result in increase of up to 159 bpm. Neither GP or me/cfs clinic are bothered about this. Say it's just part of me/cfs and I'm just deconditioned.

It makes me feel so ill. And alone. And dismissed. And powerless God I hate these pity party days!

Thanks, wood.

Got DD home - found another bus that went from nursery into town - was sort of hoping I could use my multipass but no, had to pay for the trip seperately, but at least we rode that distance. Still took forever to get home. The second bus was so crowded it looked like we would have to stand and I nearly cried but then there were two seats way in the back.

I was in so much pain yesterday :( Barely slept Mon night due to it and stayed home all morning until I had to go in. Nabbed a stool and only got up to 'perform' although people all said I was appeared energetic. That was good, as I was super-spacey!

Today was better, but I ate too much again (as in, maybe 2/3rd a normal diet). I am SO hungry. And I know I need to eat less to be in less pain and just slowly increase, but it is so hard.

I get so frustrated with the medical community. I feel like I get all these mixed messages. "You need to advocate for yourself" but yet when I say things like HCP said X and it doesn't feel right, you hear "they're professionals and they have much more knowledge than you; listen to them." And I've got a gastro treating me like I'm anorexic and yet I clearly need some help there since eating hurts and I'm so hungry and want to eat, yet all he's going to do is criticise me and tell me I "must eat" and threaten tube feeding (like he did last year) because all his tests say I'm fine so it must be my choice - although maybe not. I can't help but I keep being honest all the time and hoping they'll actually help, then being disappointed all over again when they don't.

One week left to have your donation to the OMF tripled. Whatever you donate will be tripled. Medical research is the only way out.

Hi everyone
Back for a good old moan!!
So...lots of awful symptoms since beg of Nov
It transpires I am having runs if Afib at night whilst I'm asleep so I've had another sleep study
My fibro is awful ATM - I'm in so much pain I'm relying on string painkillers just to function
Dr has asked for ecg which was ok and a 24 hour one which I should hopefully have soon
She has px me nortriptylene (sp?) for night times and I take the first dose tonight!
I'm in so much pain I'm not sleeping and then I feel so spaced out
It's horrid
Dr has also advised me to get a massage to help...thoughts?