Chronic Fatigue
 

Does anyone want to talk about the fatigue part? I also have fibro, but with the right drugs I can sleep and that prevents most of the pain for me. But I am having tremendous trouble with managing my fatigue. How do you schedule yourself --match your activity to your energy budget, when the available energy isn't the same day to day? And how do you motivate yourself to not do things when the result of overdoing won't be felt until later in the week, maybe?

At its worst this is the kind of fatigue I'm talking about: I last about 2-4 hours after a sleep, my muscles can't sustain more than a few minutes of activity, then they start to quit on me --like when you've done the first 30 sit-ups and your belly muscles are shaking and begging you to stop. (Anyone remember being able to do that?:D) I find myself panting because my breathing muscles won't take a deep breath. I can't hold my head up, keep my eyelids up, etc. I lie down to rest, and 2 hours later I get up and I'm good again -- but only if I don't do too much and only for a few hours. Thank G-d it isn't like this all the time!:)

So, any suggestions? I am using provigil, and it helps some, but mostly with the mental fatigue. The muscles are something else.

Yes, the fatigue can be just as much a problem as the pain. I read awhile back that we fibros should rest and hour and a half every day. Sometimes you just can't do that.
Yesterday I had to get up at 6AM after having trouble going to sleep the night before. It hit me this morning when I couldn't get out of bed until 11AM.
You know, the sleep and pain are inter-related. Not enough sleep means more pain, and pain can interfere with sleep.
Both mean memory problems.

Unfortunately now that I started working again full time, the fatigue has also come back full force. I totally underestimated how tired I would feel today. But what can you do? Meds only work so much. Rest and sleep are the best solution. Janet is right though.....when do you have time to do that and live?
What I used to do is called pacing. Gauge what my fatigue level is that day and allow it to call the shots instead of me forcing myself to take that one last step.
Always remeber, you are waking up in the mornings with a deficit already. Let your life move you accordingly.

Sleep? lol
 

My sleep patterns are so off and on that it is hard for me to get adjusted. I have tried every sleep pill available and my mind just won't shut down. I have RLS and my legs move constantly. I wish I could tie them down. I have been taking Diazepam 20mg lately and that will get me about 3-31/2 hours of sleep. But yes the pain does feel a lot worse if I don't get sleep.

But then there are days, like this past Sunday, when I went to bed at 11:00pm Saturday night and didn't get up until 5:00pm Sunday evening. I did get up to go to the bathroom and take my morning meds, but other than that I was completely out of it. I do that every so often, which scares me. Because if something were to happen to my husband or son, I don't know that I would be able to get out of bed and actually help them or understand what is going on. That is how out of it I am during those times. Does anyone else have that problem.

I have been dx with CFS, Major Depressive Disorder, and Fibro, however my rheurmy and neuro are contemplating on whether I have Fibro or MS, but as or now my dx stands as Fibro. I have many other dx, but too many to go into right now.

M

I take trazedone, seroquel and tegretal at night as treatment for depression AND so I can sleep. Without meds, I don't sleep. Yes, the rls is a total drag. Drives me crazy.

Same here with the Trazodone. Without it, I would never sleep.

Hi Shari,
 

My CFS is the hardest thing for me to deal with. I also have the Fibro, RSD, MS, TOS, CPS, IC, and too much more to name.

I go to sleep reading, watching tv, or with company around. I have almost fell out of the bed and off chairs because of it.

It's the one thing that I complain about most with my Doctor. He actually believes that I have something else going on causing mine so he sent me to an Immunologist which can't find any answers. He did find I had sleep apnea but due to a VNS implant for depression I can only use Oxygen at night. It is not helping with the CFS.

When I first noticed it the most is when I slept for about 16 months straight. I was going nuts trying to function normally. Luckily my husband was very understanding about the mess I have been in. I finally got through the sleeping all of the time to now just falling to sleep when I'm reading, watching tv and just sitting around. What is embarrassing is trying to stay awake when you have company and they are talking to you and here you are needing toothpicks to keep your eyes propped open. LOL Too many times to count.

I have trouble taking meds so I just don't ask for any anymore. If new ones come out my Dr. will let me try them but otherwise I just try and deal with it.

I don't sleep at night either. That is another thing I keep asking my Dr. How can a person have CFS but still not be able to sleep at night?

I totally know where you are coming from. I too have trouble with the breathing. That's one of the reason I am not able to use the sleep apnea machine. I quit breathing in my sleep a lot and I also found out this summer I have a lot of allergies. They have given me allergy meds but again, I can't use them. I can start doing little things like cleaning the house and I start huffing and puffing.

I have no muscles. Since losing Bill my Grandson opens my jars for me and helps me with anything I need done around my house along with having 2 caregivers to do what I can't do.

As I said, I totally know where you are coming from.

Ada

Fatigue is by far my most disabling symptom. I get the best sleep I possibly can, pace myself and take muscle relaxants when the pain starts getting too far out of hand, but the fatigue still kicks my butt. I have to restrict my driving to no more than 45 minutes continuously because otherwise I'll doze off at the wheel.

I have to build limits in to every single day, and vary my activities throughout the day to prevent excess soreness from repetition. For instance, washing dishes no more than once a day, cooking only one meal a day that is more complicated than just heating something, flipping through one magazine and then doing something else, short sessions on the computer, one phone call, one tv show, etc. And I try never to leave the house more than once in a 24 hour period.

I try my best to build in some down time before and after a planned activity that will be energy sapping, like someone's birthday party. I try to get my husband to drive me to anything that takes place during hours he's not working so I won't have used all my energy just getting to my destination. And I try to prioritize and only do things that will be worth the effort.

I guess the best advice I can give is to alternate your activities so that something that requires effort is followed by something easy. Like, say, empty the dishwasher, then watch a half hour TV show, then maybe do a few stretches, then flip through the newspaper. That way, the fatigue might hit you less hard or less often.

As for the sleep, understand that it will be irregular because that's part of the illness. I wish I didn't need 12 hours of rest a day, but I have accepted it and don't freak out when I don't accomplish what I wanted to that day. Most of the time, I just try to pick up where I left off the next day, or consider asking for help or just not doing it if it's too much for me.

I guess you could call it embracing the low-key lifestyle. :rolleyes:

fanfaire
:cool:

I'd like to know how people are dealing with their jobs and the fatigue. My boss is constantly coming to me at the end of the day and "pushing" me to stay and work longer or come in and work weekends. So far all I can do is say no and walk out. That's not a good alternative when their constantly looking for people to terminate.

Does your boss know you have FM? You might want to let him know you have an illness that does restrict your hours. If you are afraid of termination, I would have a doctor's note or letter of some kind saying you do have an illness (it doesn't have to be specified) and working beyond your "set" hours is something that can't be done.
Check the Americans with Disabilities Act also called the ADA, its been a while since I've seen it.