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LittleOrchid

New member
Joined
Jun 18, 2016
Messages
3
Reason
DX FIBRO
Diagnosis
06/2016
Country
US
State
OH
I just spent 16 hours in bed and I'm STILL tired. I have never felt exhaustion like I've had the last couple days, in my life except when I had the flu very bad and obviously there were other symptoms than fatigue with that.

How do YOU deal with this for days on end?
I have a lot of guilt building up because I'm a stay at home Mom and have a house to run but today... it ain't happening! Just typing, all my arm and hand muscles are tired. I guess I need to not be so hard on myself and give myself permission to go back to bed...

Very hard!
 
I am so sorry LittleOrchd and i hope your fatigue passes soon. I had fibro pretty bad for 7 years but then 2 years ago it got much worse and i have been stuck how you describe for almost 18 months. The last day i was up and out for a while was July 2015!

Your body is telling you to rest right now...mix it up with gentle exercise when you feel more able....I would'nt wish these symptoms on anyone.Take Care
 
It's the worst feeling ever.
What I have found is,that having exercise has helped a great deal with my fatigue .its not something you would put together I no.but it works for me.x
 
It's my life. I have bursts where I get things done and I drag myself hiking as much as possible but I am never not tired and there is never a day everything is done. When a "crash" hits I sleep nearly all of 24hrs and when it doesn't I need 10hrs and my brain will only function well for about 8hrs after I wake up. Then I spend the night tired, not sleeping, and feeling stressed I didn't get things done. Especially when you have lives depending on you. I don't have children but I have lots of pets. I want to give them perfect enclosures, take the dogs outside as much as I should, do gardening, martial arts, and hiking but I've had to abandon gardening because it's beyond my daily spoons (to use the spoon theory) and due to ptsd type symptoms I have trouble doing things outside with people around who could try to talk to me or comment on my activities. It's not the only hobby that has suffered.
 
i sleep almost most days for 18+hrs a day and still feel tired and not rested EVER!!! i cant make it to appointments or anything, because i just NEED to sleep....

then my psychiatrist prescribed me Adderall, at first i was super skeptical because of all the bad things ive heard, about people getting hooked, and how its just prescription meth.. but, its being used for other sleeping disorders, and at the time i was prescribed this, i had no real answers to why i was SOOOOO OVERLY in need of sleep... i had no life, i couldnt... so adderall saved me, i can stay up throughout the day.. though ill still have my times where i wont take it and ill sleep all week.. and i still mess up, and take a dose too close to nighttime and im up all night...
but quality of life has improved with the stimulant
 
My doctor won't combine a stimulant with my insomnia meds. He doesn't believe in doing things that way. I could really use something more efficient and not as bad for my heart rate as caffeine when I wake up. I'd get more done and probably sleep easier but because of all those nights I don't fall asleep (it's 5:41am) I only get sedatives. I think I need an entirely new approach to my sleep and getting a physical diagnosis would help but it's a lot of work.
 
Hi Kaliska,
You and I have a couple of things in common, as I also have companion animals and feel terrible that I am not giving them as much exercise as I want to. I am not getting enough, myself, either. I also used to hike all the time; it was my favorite thing in the world to do, and dance a lot as well, and now I am usually too tired to go. Even when I feel able to go hiking I hesitate to do so because my hiking companion dog died and my other dogs are either too old or too small to go hiking with me, and I don't want to go without a dog. I may have to get another dog in order to go hiking again! It is really the only exercise I can do, any more. I used to lift weights and can't do that enough any more to make it do me any good.

My hobbies have really suffered as well, as has my work, due to just not having the energy I used to have and having so much crazy pain. It is just unreal and irrational for things to hurt as much as they do. I can understand why people sometimes don't believe it because I might not either, if I were not the one experiencing it.

I also have had PTSD....had it for years.... and can completely relate to what you are experiencing with that. I don't really have full PTSD any more, but I still try to avoid being around people as much as possible, and that's another reason I have a hard time going hiking.....too many people on the trails these days. It ruins it for me.
 
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