I am so tired

flutterby

Fly away!
Literally.

I'm doing the fatigue/sleeping thing again. I cannot seem to stay awake for more than 2 hours, and if I do it's torture. I've been awake since 9:30am and I feel like I'm going to vomit. When I do lie back down, I don't sleep for 30 or 45 minutes. I sleep for hours - plural. And 2 hours later, all I can think about is going back to bed.

Except last night I couldn't sleep, for some reason. I was so tired I couldn't walk straight and couldn't keep my eyes open, but I didn't go to sleep until after 4:30am.

Today? I saw therapist at 11:30. I'm slurring and mispronouncing (thank god for spell check) some of my words - and I'm not any pain or anxiety medications. I scrunched up the pillows on her sofa and had my appointment while I was curled up with my eyes closed most of the time.

I picked up difficult child from school. My car has the doors that lock automatically, so when I pick her up I have to unlock the doors. I couldn't find the button to unlock the doors. Instead, I tried all of the window buttons and the window lock button before difficult child pointed to where the lock button is.

Then we came home for a min and left to take her to therapist appointment. I turn the ignition to the point where it does the system check like you're supposed to instead of immediately starting the car. Put on my seatbelt, put the car in reverse and wonder why it won't go. Yeah. Forgot to start the car.

I shouldn't be allowed to leave the house. I've been messing up appointments all week. I've had to reschedule 4 things because I double booked myself. And I have all of my appointments written on the calendar.

This is the worst part of this illness. The pain sucks, but I can function. I can't function like this. I'm watching the clock for 4pm when I can pick up difficult child and go to bed.
 

tiredmommy

Well-Known Member
I know you don't have a lot of options but do you think you should be driving? I'd hate for you to have an accident because you're so deliriously tired....
 

Wiped Out

Well-Known Member
Staff member
Oh Heather,
I so wish there was something I could do to help you feel better. Every day you are in my prayers. Many gentle hugs.
 

flutterby

Fly away!
Should I be driving? Probably not. Someone was suspended at easy child's work so he's covering those hours on top of his scheduled hours and DF has finals this week. I have an appointment tomorrow to recertify for foodstamps and medicaid. They schedule the appointment and send you the letter with the date and time. If I don't make it, I'll lose benefits.

I can't find difficult child's prescription. I can only think that I must have thrown it away by accident. I can't remember what I've done since Saturday except for today and it's already getting foggy.

No wonder I forget how bad it is when the fatigue hits. haha :faint:
 

flutterby

Fly away!
I made it to my appointment this morning no problems. It's only a few minutes away and I took back roads to avoid traffic.

My mom is going to come up to take me to my doctor appointment. I'm getting a toradol shot that includes phenegran and I was really worried about driving home because sometimes by the time I get home, I can barely walk from the phenegran (it knocks me out). Other times it takes a while. With my level of fatigue, I figured it wouldn't take a while today.

Last night, I looked again at Chronic Fatigue Syndrome. You do have to rule out everything else that has been ruled out with me (AI disorders, muscle or never disorders - such as MS, endocrine disorders, etc). And I have every single symptom. You only need 4. I got the information from the CDC and the NIH. I thought that CFS was already in my medical records, but it's not. I also thought it was a minor component, but from reading the information it's not. So, I'm taking the information with me to the doctor appointment. I'm barely functioning at the moment and having this in my records could possibly help my disability application. You can google it and check the CDC and Medline Plus (which is a service of the NIH) if you're interested.
 

DammitJanet

Well-Known Member
There is nothing minor about CFS, or its mirror twin Fibro. One shows up with extreme fatigue as the major component and the other sneaks in with pain.
 

GoingNorth

Crazy Cat Lady
CFS is recognized as a legit disease in Europe and the UK, but some authorities in the US don't yet recognize CFS as a real disease process. I got my fibro diagnosis thirty years ago in Europe.

It wasn't until I was in my late thirties that I got the diagnosis in the States. diagnosis is basically ruling out everything else sx could come from and then treating symptoms. There is a good medication out for the fatigue. It's called "Provigil". It may be something to discuss with your doctor to see if it is appropriate for you. It's also terribly expensive and ins companies don't like to pay for it.
 

KTMom91

Well-Known Member
Thinking about you today...hope your doctor's appointment went well and you were able to get some peaceful and restful sleep. Many hugs.
 

totoro

Mom? What's a difficult child?
Can they help you more accurately with a CFS diagnosis?
Please be careful driving, I know you don't have much choice.

Doesn't sound like the sleep is helping, but keep sleeping when your body asks for it.
Don't overwork yourself
 

flutterby

Fly away!
Fibro is no longer considered a rule out diagnosis, although I do think further testing should be done before just saying it's fibro. It's kinda becoming the new ADHD kinda thing.

CFS is a rule out diagnosis. And I think my doctor is one of the ones that doesn't really believe in it. She did say she doesn't know anything about it. And she is willing to look for studies and trials in the area, and some other information. It *is* a legitimate diagnosis and the CDC has been pushing awareness about it for several years now.

There really isn't treatment other than supportive treatment right now.

GN - Provigil has a strong psychiatric side effect possibility. Those kinds of medications are a no-no for me.

I slept 16 hours straight. Went to bed at 8pm and got up at noon. And I'm fighting to stay awake.
 

totoro

Mom? What's a difficult child?
There used to be no such thing as PMS also! We were all just crazy... hmmm, maybe that's all it is, no Fibro, CFS, PMS, none of it, just a lot of crazy women.

Send us all to an Island with Raoul!
I figured Provigil would not work for you, you are running out of medication options! Sorry the sleep is not helping
 

GoingNorth

Crazy Cat Lady
I didn't know that about Provigil, just that it really helped a friend with MS fatigue and that a precursor helped husband a lot with sleepiness from required pain medications. I don't have CFS, nor do I know anyone who has it.

I know that when I came back to the US and told a doctor I had fibro, she rolled her eyes at me
 
There is a good medication out for the fatigue. It's called "Provigil". It may be something to discuss with your doctor to see if it is appropriate for you. It's also terribly expensive and ins companies don't like to pay for it.

Heather--I hear what you said about this type of drug being off your list of options, but for what it's worth for others, provigil's newer cousin nuvigil is being marketed now with great freebies. Details on their website. I just today filled a prescription for 30 at zero cost, with a coupon from the manufacturer.

Provigil has been a tremendous blessing for me in treating my sleep disorder. I really think it has restored me to "normal" in that particular regard. I'm hoping nuvigil will be as effective so I can take advantage of all those incentives being offered now.
 

flutterby

Fly away!
I have stayed awake since I got up at noon. I'm up now because my RLS is hitting in a big way. But, all day I haven't had the energy to even sit up for more than a few minutes at a time.

easy child brought me a salad from Wendys. I had to have him put the dressing and croutons in and mix it for me. I didn't have the strength or energy for that.
 
M

ML

Guest
Well I'm glad you lost 10 pounds. I guess all side effects of being sick aren't bad! I think you should find a doctor that does believe in CFS! I don't know, it just seems to fit and answer so many questions. Having said that I don't have a medical degree so what do I know. I just feel bad that you're suffering. Hugs, ML
 
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