Do you have a energy crash ?

[Dollydolls]

Hi , I was wondering who else had energy crashes every day , it doesn’t matter how much I pace my day I can guarantee it will happen midday- late afternoon and it’s instant like someone’s turned the light off . I can feel it coming then I know I have to get home if I’m out ( which is rare these days ) I’ve even had to sleep in the car for a couple of hours until I’ve been ok to drive again .

[honeybug]

Hi Dollydolls 😊🌿🌸🦋

Yes...me too!!!

I compare it to narcolepsy. No control over it.

Have to make sure I’m not doing anything that can cause danger such a cooking or using anything electrical.

My doctor suggested a sleep study which I am considering after pandemic.

EJ 😊🤗🙏🕊

[JayCeon in reply to honeybug]

I did 2 nights of sleep study. Apart from false positive snoring due to the tubes in my nose making it harder for me to breathe, it showed shorter deep sleep. So didn't help much. But I'd do it all the same, if you haven't yet. Someone came round and put the stuff on me at home and in the morning I took it off and gave it back. I'd've slept much worse in the lab (mattress, blankets) so it'd've been silly for me to sleep there.

[Dollydolls in reply to JayCeon]

Do you dream a lot ? I’m constantly dreaming and I remember them as if I’ve lived them , maybe that’s why I’m so tired but how do you overcome that ? I could sleep on a washing line when my energies gone tbh . Will ask my doctor about my sleep hygiene ( soz mind block on another word )

[JayCeon in reply to Dollydolls]

I dream more and more extreme when I've taken stuff for sleep - amitriptyline, melatonin and now CBD oil. The more I dreamt, the more tired I was in the daytime. Reducing the CBD oil to one drop at the moment has reduced both. But dreaming is actually good for you, it isn't normally what makes you tired, just shows how deep your sleep is, I think doc's'll say(?)

Yeah, but asking about sleep hygiene is a good idea.

BTW: I used to need under 8h before fibro, now I need 9-10h on average, of late even more. Maybe that's something to consider?

[honeybug in reply to JayCeon]

Thank you so much for your helpful reply. I’m across the pond and I don’t think we have at home sleep studies here. I haven’t been able to sleep in the bed for 7 years now.

I’ve been napping in my luxurious office chair. I have injured my thoracic spine multiple times and now have multiple other spine conditions that prevent bed sleeping.

I have decades of painsomnia that all of my conditions produce such special chronic pain insomnia leaving me off the charts with sleep deprivation.

This is why I finally have decided to do the sleep study. I have the slightest hope but hope nonetheless that something can be done to help me.

You have given me more courage to pursue this endeavor.

Than you so much for the comforting reassurance my friend.

EJ 😊🤗💗😘🙏🕊🌿🌸🦋

[JayCeon in reply to honeybug]

EJ, you're welcome! I know tho, that sleep lab tests at home are offered in the US, the UK (seen both on the web) as well as here in Germany. And as to insurance questions: I can imagine it's a lot cheaper at home, even if less precise. And who'd be more entitled than you if you tell them that you can't even sleep in beds?! On the other hand I don't know if you c'd take your chair with you into the lab, but asking wdn't harm!

Interesting for you could be that there are often 2 types of specialists that do them, mine was more psychiatrist, no lung doc, fitting as I didn't seem to have breathing problems; but referred me to an ENT. In bigger sleep labs there seem to be all different relevant specialists.

Keep your hope & motivation up, each baby step counts...!

[honeybug in reply to JayCeon]

Hi JayC 😊

You said you were in Germany...may I ask where?

I lived in Schweinfurt for 18 months during my hubby’s Army tour of duty there.

Thanks so much for the info on home studies available Stateside. My ENT never mentioned that to me. His office is a 2 hour round trip drive from our home. I really didn’t want to be that far away just in case a crisis occurred.

Because I have autoimmune disease and multiple compromised systems in hospital testing would be best. I wouldn’t fall sleep in my bed at home so being there wouldn’t be any different.

Mine is needed more for medical reasons with 61 different diagnoses starting at birth and 3 still pending.

Maybe many areas of concern can be addressed with this one study as the brain controls all bodily functions.

Thanks again Jay.

EJ 😊🤗♥️🥰🙏🕊🌿🌸🦋

[little-queenie in reply to honeybug]

Nice to hear someone else sleeps in a chair and im not the only one. My energy crashes can be so sudden, have fell asleep visiting my mum and a close friend came for a visit and i crashed so embarrassing.Gentle hugs

🤗🤗🤗

[honeybug in reply to little-queenie]

Hi little-queenie 😊🌿🌸🦋

Sorry about your embarrassing nodding off with Mum.

I actually fell asleep at the doctors office. Very embarrassed...always anxious/nervous there. I was shocked to learn it really happened.

Sorry you have to sleep in a chair too. I have severe edema problems from being in sitting position 24/7.

Gentle hugs 🤗 love 💗 and prayers 🙏🕊 to you sweetie.

EJ 😊🙏🕊🌸🌿🦋j

[desquinn Partner Volunteer FMAUK Trustee]

some people have experienced hypoglycaemia independent of diabetes and need a sweet to restore their balance.

[Dizzytwo Moderator]

Hi there😊 I think most people with fibro have certain times of the day that suits them better than others.

Mornings are my worst times I honestly can crash when I've woke up. I'm absolutely useless before midday.

Others are good to go in the morning and seem to crash in the afternoon and so on. It is normal with many fibro/CFT people to have these so called crashes through out the day I believe ☹️

[Dollydolls in reply to Dizzytwo]

Dizzytwo does yours feel as though a switch has been flicked and it’s instant ? It takes me ages to get together in the mornings I stop and start all through the day then bang completely washed out .

[Dizzytwo Moderator in reply to Dollydolls]

Yes unless I pace myself I feel like I've hit a brick wall ☹️

[JayCeon in reply to Dizzytwo]

Dollydolls: To add to Mo - I'm still not in tune enough with my body to always know in the sense of feel something's coming up and pace in time. So pacing can mean to remember that 2 longer activities per day has been enough this week, so to try to chide myself when starting a 3rd one and get myself off it, however good I appear to be feeling. Often stopping or resting will show me better how bad I'm actually feeling.

My wife helps with both: You don't look good, or you're doing too much today. But if I don't listen to her either, then the crash will come even harder and longer - days or even longer.

[honeybug in reply to JayCeon]

🤗🙏🕊

[Dollydolls in reply to JayCeon]

JayCeon I totally relate to that , I really beat myself up at the beginning and I’m now embarrassed to say had quite a pity party towards myself . I’m still learning to adjust and I still miss my old life like crazy but my husband , children and teenage grandchildren keep me in check and up to date with all the latest trends ( they won’t let their Nan grow old gracefully) . I’ve adjusted my life I work from home for my husband , I no longer ride my horses but get pleasure out of watching my 14 yr old granddaughter compete , I watch my 15 yr old grandson compete in grass track racing and my eldest 16 yr old granddaughter is at college doing a beauty course so I get the practice perks . Life’s still there just different . Listen to your wife they see us struggling before we are able to admit defeat . I no longer take the “ mum you look like crap today “ as an insult lol

[JayCeon in reply to Dollydolls]

Haha, love that one, 😂! Gonna 'write it behind my ears' as Germans say...

[LisaSnow FMA UK Volunteer]

I have stopped fighting it. Just nap when my body begs for it is the kindest thing to do.

[JayCeon in reply to LisaSnow]

Yep! I used to think napping will make my night more difficult, it doesn't tho, and I don't just 'nap', I often sleep 30 mins. to 2h.

And now I've realized that fluey-feverishness means I'm tired I (try to) go nap even when I don't have itchy-dry eyes or other signs of tiredness, instead of flashing it over with cold water/shower like I used to. Next step will be to try sleeping if I know I should be tired, like after a bad night, like last...

[Thebonecollector]

I get this most days about 2pm weather I have a a reasonable nights sleep or a bad night. It’s annoying but I’m hoping that with the better weather coming it will get better for a few months, I just have a nap if needed..

[Dollydolls in reply to Thebonecollector]

Hoping the weather helps x

[Comfyplace]

I feel you Everyday and like you say, it stops you from going out I try to pace things out but doesn’t make a difference and if I fight it and keep going the tiredness take of my whole body where I just need to sleep and block everything for a little while

Everyday I’m learning how to cope

Good luck and take care

Sammy x

[Dollydolls in reply to Comfyplace]

It’s embarrassing at times , I went to my daughters last week ( she’s in my bubble and takes me shopping ) we were out for 20-30 mins and I feel asleep in her sofa for 3 hours ! I think she panicked I was moving in lol

[saluhouse]

Hi Dollydolls. Do understand where you are coming from. I sometimes feel I’ve been tasered (never have been - but think I can appreciate how it feels). Just have to lie down and wait for it to pass. It usually happens in the afternoon.

I don’t even sleep - just lie there waiting for the energy to return. I then feel a bit groggy - but just try to get back to whatever I was doing. It’s weird.

Xxx

[Dollydolls in reply to saluhouse]

It’s crazy isn’t it , it feels like all my energy has totally gone and My legs and arms feel like lead weights . You take care of yourself and if you find a solution pls let me know as I will you x

[JayCeon in reply to Dollydolls]

Weelll, the only "solution" I've seen/found other than sleeping enough, preventing by pacing or resting as is needed, is cold water or showering, which seems to only help some and not always, and others say warm baths with Epsom salts etc.

But this is it - just plain fibro, the real thing, so sorry to say there is no solution like you are maybe hoping for, apart from the above....

[Dollydolls in reply to JayCeon]

JayCeon , I’ve came to the conclusion that no matter how I’ve tried to fight it , it wins hands down , so now I’m that old lady ( erm not so old ) with to many dogs that potters about ( covered in tattoos with a attitude and sense of humour of a sewer ) but it’s now myLife .

[JayCeon in reply to Dollydolls]

Whoops, how embarrassing, didn't spot the irony in "solution", gotta keep on me toes here ;-P

[Dollydolls in reply to JayCeon]

Don’t let it take everything you are !

[lovelab]

maybe test your thryroid TSH, F4 and F3 ...

[saluhouse]

Hi Dollydolls. You are right - it’s a club nobody wanted to join - but now we’re here - we find the other members are really nice!

Xxx

[Taylored]

I'm exactly the same. I manage a max of 5_6 hrs usually then bang. Bed time! Can't function.

[Dollydolls in reply to Taylored]

That’s it ! even with sunshine today I was asleep for a couple of hours .

[Taylored in reply to Dollydolls]

Have had to lie down in so many places in the past. Buses. Cars. Pubs. Mcds! Life's a bit less hectic now so I work for a couple of hours in morning. Drive home. Bite to eat. Bed. Any idea what causes it?!!

[Dollydolls in reply to Taylored]

I really have no idea tbh , I’ve tried pacing my days , I eat healthy , take vitamins, walk my dogs each day ok slowly . I’m lucky that I work from home for my husbands business and do things as I feel during the day .

[Taylored in reply to Dollydolls]

Yes. I've had this for over 20 years. Doesn't matter what I do it stats constant. It's just been a case of sorting life to fit as you've done. Wish you all the best.

[Dollydolls in reply to Taylored]

You too my friend take care

[JayCeon]

I slept 13h tonight and I spose I shd say today 😆, only some of it was dozing. Plus 1h awake in between. From 9 to 11. The most ever in my life. I cd've forced myself to stay up at 8, but I wanted to find out what happens. Happier at least and more awake than in the last few weeks. Hope this is balancing out and not the new normal 🤪

[dannii01]

Hiya. Yep I crash every day. Han be baking and have to pull it out the oven to go sleep. Driving is a bit of a nightmare too. I feel like the fatigue is worse than the pain some days

[Dollydolls in reply to dannii01]

dannii01 , I’ve often said that , I can handle the pain to a degree but the fatigue and a relentless at times , no matter how much I sleep , rest , exercise etc. Then to top it off I start talking jibberish , that’s when I truly know the day is over . I can sometimes fluently speak words backwards ! What a talent

[Comfyplace]

Those are the exact word I said to my pain doctor If only you could stop feeling so tired all time

Hope you’ve had a ok few days

I’ve found it quiet hard this week but I blame the cold and rain

Please give us some sun