I think our body just kind of shuts down to try to heal itself. Our bodies need to rest so they can try to fight off whatever is causing the severe fatigue and other symptoms. This is such a huge illness it really affects our whole bodies.

Bump

I remember when I was in pain and in bed for 18 hours a day. I remember when I crashed 9 times a day. I remember when the only thing I could do was empty the mailbox OR unload the dishwasher. I remember when talking took all the effort I could muster. I remember when I could only talk to my wife for 5 minutes per day. I remember when driving was too dificult. I remember the smashing headaches. I remember the pain. I remember the exhaustion. I remember the guilt I felt at being the only income earner in the family and being sick in bed.
I beleive CFS can be as bad as you are experiancing.
If you can reason with yourself and say to that guilt "I'm Unwell now but one day I will be well" then hopefully that guilt will ease a bit. I remember when I finally listened to my body which was saying I had to STOP and REST and I remember when I chose to stop trying to do all the things I felt I should. It was a watershed moment for me.
All that was 4 and 3 years ago.
We are here for you Sue.
We have some idea what your going through.
Have you had your Nitric Oxide level checked by a Dr. The crashes may be when the Nitric Oxide converts to Peroxynitrate.
Print out this article and take it to your Dr, article at;
http://molecular.biosciences.wsu.edu/faculty/old%20files/pall/pall_main.htm

If Nitric Oxide is high then it has to be deregulated.

Were here for you Sue when you need us.
Al

Dear petitep (Patty)
"All of this is NOT Sues autonomic nerve system response that tells your system when to shut down and when to wake up and that you're well rested... " at all.
Please refrain from making such totally unhelpful statments to CFS sufferers.
Patty please read
http://molecular.biosciences.wsu.edu/faculty/old%20files/pall/pall_main.htm
and understand that your autonomic nerve system is effected by your blood serum gas's levels and that your autonomic nerve system does not have any bearing on the many various blood serum gas's levels as you inacuratly claim.
Patty please refrain from making such hideously inacurate claims. Please stop trying to "recruit" to the Neuropathy sight. We understand you are passionate about your sight and rightfully so its a good resource but your incorrect when you place these add's on CFS sufferers posts. Yes the Nervous system, is involved in CFS, its just one of the three systems (Endocrine, Immune and Nervous systems) that are involved but the belence of probabilitys for CFS indicate that the cause/trigger for CFS is Immune system malfunction/overload and/or endocryne system malfunction (Adrenal disorders and or Thyroid disorders)and that blood gas anomilys and mineral deficiencies from these system malfunctions impact on the Nervous system in things like peripheral neuropathy and twitches etc and not the other way round.
Sincerely
Al

I have to be honest when I say i was given those medications because I was bedridden, like you, and I have to work a full time job and raise my family. It hit me fast and it hit me hard. Yes, the medication gives you energy. If I don't take it, I am in bed again. FOr me the extreme tiredness is a daily way of life for me without the medication, it has been for almost 2 years now. It stays the same, it doesn't wax and wane for me. Sometimes, when I flare in a bad way, all I can do is sleep and the medicine doens't help. that is like a couple times every couple of months. The rest of the time, I push through the day. I hope you feel better soon, and if you have the opportunity to rest as much as you can, please do! I just cannot rest a lot in my life unfortunately. I wish I could.

Yes it can. I think it's because our body is telling us we need to rest so it can try to fight off whatever is causing the illness.

Hi Cutesy. As you've seen your symptoms are quite common. That's the way my CFS started out and didn't get better for about 5 yrs. I have 3 things that might help you: 1) you have to accept the fact that you're ill and stop feeling guilty. I don't know where you live, but I know in the US our culture tends to make us feel worthless when we're disabled, which people with Fibro or CFS are. You have to know you are worthwhile, even if you're just lying in bed. I personally find this self-worth in my relationship w/God. 2) Your husband also must accept your illness and the fact that you need extra help. And you both have to accept the fact that things will be different. You may not be able to get all the housework done like you used to. I know I can't. I have to put up w/messy carpet, dust on the furniture. I have found some housekeeping shortcuts, and meal shortcuts. 3) Find out from a doc if you have CFS. If you do, you need to exercise every day. Even if it just means walking a block. Even if that's all you can do.
If you can find it I recommend "The Doctors Guide To Chronic Fatigue Syndrome", by Dr. David Bell. It helped me learn how to live with CFS. Hugs to you.

It does get that bad from my experience, it is where I am right now. I need to rest, I hate to have to rest, I feel like a naughty girl being sent to her room all the time and missing the party.
Oh, btw, Ali5ter, thanks for that pointed "telling off" you did. Ours is a complex disease - we are fatigued and we need to rest. Now, if I can just follow my own advice and rest....... but we feel guilty and think we should be doing things. Thanks for this whole thread for reminding me of how important, and how NORMAL it is to go and lie down.