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.

I've presented a letter from my doctor and my boss had me get a document from HR updated with my restrictions. In todays work environment though although they do is "harrass" people to get the work done yesterday. Although I understand it happening, getting passed by for raises and promotions because I can't work 6o hours a week makes me angry.

sleep...
 

My doc had tests run, and found that I also have sleep apnea. I cannot take the breathing masks at night because it terrifies me that it is taking my breath away. Stupid, huh? So...the doc said for me to go to an ear nose and throat man. Haven't gone yet.

But, I keep noticing that everybody here takes different sleep medication. Oh, I have found a million that can knock me out!!! But, none allow me to get to the right level of sleep. I am afraid some of you might need to be checked for the sleep disorder too. The fatigue will not go away with sleep if the depth is not reached.

sally

Groundpounder....I am so sorry to hear that your job is very stressful. But I will say again. Because of your FM, the ADA does back you up. I ran into the same problem before I gave up and went on disability 5 years ago. In July I finally went back to work so far its been a much better environment for me than the other place of business.
Please try and find support where you can.
Feel free to IM me or PM me. I can totally sympathize with your situation.

Completely understanding here as well. And yes, I find the CFS very disabling. But, I'm wondering how everyone here manages to fall asleep so often!!!

My fatigue is just that...I have such chronic fatigue that my house is messier than I have ever imagined it possible. I used to clean on the weekends, and now I can't even do that.

I know the depression plays a part in that, but seriously...I feel like I'm living in a pigsty.

I work 40 hours a week and when I get home at 5 pm...the very last thing I want to do is clean anything!!! I basically collapse until it's time to go to bed.

I can't remember when I last slept without sleeping pills and I've taken a lot of them. For a while now I've been taking Restoril. A neurologist I saw (and was diagnosed with sleep apnea) told me that he wasn't very fond of people taking Restoril and thought I should consider other meds. I try Trazadone, but that stuff just does not put me to sleep unless I take at least 100 mg of it.

I also can't remember the last dream I had, and my dreams used to be very vivid.

For me, the chronic myofascia pain is the pits. People can touch me anywhere and it hurts.

Sorry I can't be of help to you in how to deal with the energy deficit!

I think we live in the same place Doody. I have to play catch up to catch up!
Now I just do what HAS to be done like laundry and dishes. Also the daily pickup after my husband.:wink: But beyond that, its rough.

sympathy
 

Fatigue - ugh! I feel like I'm wearing a floor-length overcoat made of lead when I'm having flares.
I'm working full-time right now and have 2 teenagers and am single. I can barely scrape by when I have no energy. I had to change my own values and behaviors (and re-train my family!) Here is my fatigue triage plan:
First, I resigned from housekeeping. I redefined "bare minimum" to mean - Bathing, dressing, and sleeping ONLY. I don't do dishes anymore (paper plates, cups, and take-out dinners were made for people with FM!). I do laundry only every two weeks, and then only my own, nobody else's. I buy a lot of new underwear! Cleaning? Close the doors. Hire a teenager to take out trash. Squirt some toilet bowl cleaner in when it gets furry. :D I keep ONE room clean and serene for myself - the rest, I let go.
Second, I take Trazedone, and I take it early, and at the same time every night. This is essential - you must sleep. You can adjust your dosage up and down by teeny micrograms until you get exactly the length and depth of sleep you need, and also play around with your bedtime. Nobody can function on 3 or 4 hours of sleep a night for more than a few months.
Third, at work, I found the nursing mothers' lounge and [because at present there are no nursing mothers] I sneak in at lunchtime and nap!! :eek:
So far I haven't gotten caught. Honestly I couldn't sit up in the afternoon if I couldn't lie down for a while.
I don't know about you - I hate the pain, resent the mind fuzz, but the fatigue is what I hate the most of all - I feel trapped inside my own body.
I hope you keep trying to get help. Don't give up. Keep trying the night mask... if panic stops you, get your panic disorder or anxiety treated by a doctor and by medication. Then the mask. Then sleep....... You can do it, and you are worth it!

:hug:

One of the first sx's of my FM was fatigue. Sure, I had noticed body aches and pains, but just tried to ignore them. Fatigue cannot be ignored, as it hits hard. I found myself falling asleep if I even sat down and put my feet up in the afternoon.

If I don't take my Clonazepam and Trazadone at bedtime, I would never sleep. I had to give up my job due to the fatigue and pain my body was going through.. I'm like Wendy, I have to pace myself and sometimes just DO what I have to do....

Hope you can get some rest Sally; that's a must for FM, but yet so hard to achieve. I get so tired of being "TIRED". take care all.

Hi everyone!

I'm new here. Actually my CFS (which never came with fibromyalgia pain- only migraines and neuro symptoms) was found out to be something called Hashimoto's Encephalopathy, a rare complication of autoimmune thyroiditis (I had no idea my thyroid gland was under attack- my hormones always tested normal).

Though HE gets better with steroids, I don't think it was diagnosed early enough, so I am prone to relapses of fatigue. My illness looks a lot like CFS.

Boy, can I relate to all your stories! I think the worst part is not knowing what the day will be like ahead of time. For this reason I just stopped planning a whole lot of things. I used to be good at following a schedule but that's not realistic now.

I can also relate to Doody and the messy house. I used to be neat as a pin but now have learned to be tolerant of clutter and dust. I did get a lot of cleaning done when I was in remission, but when the fatigue came back had to stop cleaning.

And then the posts about work... It's really hard to fit in when you don't look sick but are profoundly fatigued. Very isolating! And if you aren't peppy you are looked at as having a bad attitude. To try and fix this, I am going to try and work from home. Not sure doing what, yet, but I don't want anyone to see me or judge how fast I work on my bad days.

I wish more doctors realized just how disabling fatigue is. I think that chronic fatigue syndrome and fibromyalgia are hardcore neurological diseases. I suspect that the fatigue in these diseases is the same "central fatigue" that is seen in MS and considered its most disabling symptom.

I don't know if this applies to anyone here, but for years my HE was mislabeled CFS. I guess it makes sense, since I had swollen lymph nodes in my neck (which I now realize were draining my thyroid) and there is a lot of overlap between these diseases...

I wonder if anyone here has been checked for HE? You can have totally normal thyroid hormone levels, it's the thyroid antibodies that are elevated but doctors usually do not check antibodies unless the hormones are off, first. Most doctors have never heard of HE.