Old 07-06-2016, 07:15 PM #1 (permalink)
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Default This is what dying feels like, right?

Diagnosed w/ FM yesterday, although I am no stranger to chronic illness.

I have been off work for a couple of years w/ a diagnosis of "severe hypersomnolence" in the absence of any other concrete diagnosis.

After a couple of night time studies, my insurer required more evidence that it was chronic and disabling, so we requested special permission from the government to have more testing done (they only allow a certain amount per year) and it was denied, so we waited it out and did some daytime/night time studies again. The end result was that I didn't have sleep apnea and not quite enough to warrant a diagnosis of narcolepsy, but it was so severe that I was asleep in under a minute most times, day or night and every 45m for 15-20m at a time didn't change that.

I am not sure what the difference is between CFS and "excessive daytime sleepiness" and I was sure it was more like the lassitude ppl talk about in chronic illnesses like MS, but whatever this is, it sure as hell doesn't feel like living.

I cannot function and feel like I am dying. :/
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Old 07-07-2016, 02:37 AM #2 (permalink)
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Default Re: This is what dying feels like, right?

For me fibromyalgia is severe weakness in the body...core, limbs and head that are so heavy and don't have enough strength to hardly walk, hold or carry things, sit up and at worst even getting out of bed to go to the bathroom or make a drink is a monumental effort,

Pain to of course. Do you have pain?

It's not exactly sleepy but you do feel exhausted sometimes too but even when you feel wide awake the above symptoms still prevail.

Everyone is different though with their level of all fibro symptoms. Mine used to be flares like the above but much better in between.

Im so sorry you feel like this ...it's horrible.
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Old 07-08-2016, 09:39 PM #3 (permalink)
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Default Re: This is what dying feels like, right?

Thanks for weighing in and offering your kind words of support.

Mine is an overall feeling of exhaustion. Muscle weakness and inability to get through the simplest of tasks without stress or struggle. I spend my days fighting sleep or sleeping. I spend my evenings fighting sleep until I can't any longer. Everything feels like a chore. Nothing feels like it is worth the effort because at the end of it all, I am in pain and dying in bed again.

I hate the idea of living like this. I can't imagine actually doing it.

I guess because I never had fibro enter my mind in all the years of waiting/wondering, I haven't had enough time to assess these "flare ups" etc. I have very few good days and as soon as I feel like I've got an ounce of energy, I use it up and am laid out again for days/weeks.

I push myself to do things w/ the family because no one wants to be held up in this shit hole that I am struggling to keep up w/ and then it's always too much for my body, so I pay for it afterwards.

Rheumatologist said I need to stop doing that and start getting out for a 5 min walk each day and slowly build on it.

We moved from a 3 level house w/ 3 washrooms and bedrooms to a more accessible space because I could no longer cope w/ the stairs (to go out to the car, to do laundry, to let the dog have a quick pee etc), but it's tiny and cramped which doesn't feel great either.

This has been so tough on my family, as I used to be this easy going, fly by the seat of my pants type, full of adventure and life. I'd come up w/ a plan and minutes later be in the car on a road trip for the next 8-10 hrs in another city, country or province, planning vacations, grabbing tickets to festivals etc etc and now...well...this shit.

Last vacation we had was 18mos ago and only because it was prebooked and paid 9 mos prior. Got there and had to get me a wheelchair or I wasn't going anywhere w/ them.

So crap. *sigh*
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Old 07-11-2016, 11:40 AM #4 (permalink)
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Default Re: This is what dying feels like, right?

Oh IsThisForReal...I get you truly I do...I know where your at as best another person could.

I was the same...road trips across Europe...beautiful locations...weekends awayto country Hotels in the UK...concerts....full of life.

TBH we all look back on our pre fibro lives and long for those days...whatever we did and whatever the individual has lost...it's a great loss.

Vent as much as you like on here.

Try the exercise building up...some people do improve in time. Also with adequate mental and physical rest peoples CFS can improve. I don't mean a few weeks I mean maybe after months or a year or so.

There are some good videos on you tube called GETWELLFROMME. A guys experience a tips for a possible path to wellness. It's not gimmicky.

You don't say if you have pain aswell?

Take Care
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Old 07-11-2016, 04:12 PM #5 (permalink)
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Default Re: This is what dying feels like, right?

Pain. Yes. Lots of pain. Pain that I pushed off, swallowed and set aside whilst I had the doctors looking at a million other things. I didn't even think to mention that I was crawling up the stairs after doing groceries etc, until they found some lesions in my brain and started their own hunt for ms (ruled out because there was no evidence of lesions on my upper spine and that's an important feature, they say).

I am definitely going to mourn the loss knowing that this may never get better and may be the end of all of those things. I guess I can start by being grateful I ever had any of those experiences to begin with.

Thank you for the info on the videos. I will have a look, but for now... zzzz zzz zz...
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Old 07-11-2016, 05:29 PM #6 (permalink)
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Default Re: This is what dying feels like, right?

Also a good source of info is book called first year with fibromyalgia by Claudia Marek and a video on youtube by Hauliie Volker called Voices of Fibromyalgia...it can only play on a lap top or pc not an android device like a tablet or smart phone.

You are in the shock...disbelief phase right now and acceptance is hard and takes along time to get to...even then its easy to go back to 'this cant be happening' especially during the worst times.
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