Important question re: FM and fatigue

Discussion in 'Fibromyalgia Main Forum' started by TerryS, Sep 22, 2006.

  1. TerryS

    TerryS Member

    I've been out of work now for five full weeks. I got a definite diagnosis today of FM from the rheumatologist. The ruling is still out on whether or not I have Chronic Epstein Barr or CFS. I'll be seeing an infectious disease doc next week to look at that.

    So, my question is - If you have FM, just how long can an episode of extreme fatigue/exhaustion/weakness last? Mine has gone on for five weeks now; although, I am definitely stronger for the past week. Is it reasonable to say that FM alone has caused this fatigue? Or might I still have CFS or something else?

    Thanks in advance for any ideas/opinions!

    TerryS
  2. Marta608

    Marta608 Member

    My primary dx is CFS with just a dash of FM thrown in for good measure, Terry, so I'll let some predominately FM folks respond. I will say that I believe they're the same thing but many of us react more with one set of symptoms (fatigue or pain) than the other. I'm not sure how much fatigue (isn't fatigue an understatement though??) is normally with FM - if there is a normal. Kind of an oxymoron.

    Marta
  3. TerryS

    TerryS Member

    Thanks for the replies! This rheumatologist told me that he doesn't want me sleeping any more than 8 hours a day...he's got to be kidding!!! I've been sleeping 10 hours a night plus often a nap in the afternoon. He said that I have to push through the sleepiness and that my napping is causing me not to get a good quality night's sleep. I told him that I would try it his way...hope it helps.

    He did give me some samples of Provigil. I'm hoping that will really help with the fatigue.
  4. TerryS

    TerryS Member

    My sister actually just loaned me the book you're talking about. I'll have to read it this weekend.

    As far as your anemia, sorry to hear that. I know for sure that I am nowhere near being anemic, so that's good.
  5. Redwillow

    Redwillow New Member

    Hi Terrys

    For me fatigue has always been a big part of my FM. One of the hardest things for me was to learn how to pace myself and give myself permission to be ill.

    I know that sounds silly but after almost 30 years of being ill and being told that there was nothing wrong with me I became really good at pushing and crashing and forcing myself to work even when I felt really cruddy.

    Now I try to do a little bit and sit down. I actually believe that by doing this I have improved my quality of life. When I flare I don't flare as badly or for as long and I that means am also able to do more things.

    hugs Marion (Redwillow)
  6. Redwillow

    Redwillow New Member

    Most people with FM don't sleep well and a lot of people have to have naps. I have to take amitriptyline at bedtime or I don't sleep more than 3-4 hours.

    I don't like that comment your rheumy made about only sleeping 8 hours a day. I know he wants you to get a good night sleep but for most of us that just doesn't happen without medication to help.

    Besides how does he know how long you need to sleep.
    I know I need a minimum of 8 hours but do better with 9 and sometimes more.

    hugs Marion (Redwillow)
  7. TerryS

    TerryS Member

    That's exactly what I've been doing the last couple of weeks (once I started feeling stronger). I'll get up and do a task for about 20 minutes, and then I'll lie down for 1 to 1-1/2 hours. I've discovered that I can get a lot more accomplished that way. If I try to go longer, I end up exhausted for the remainder of the day, and sometimes the next day.

    I'm still trying to figure out how to handle work. I've been out five weeks...go back to my PCP next Friday. No way could I sit and type for 40 hours/week right now. Might be able to do it 3 or 4 hours a day if I spread it out. I've sent an email to my boss and inquired as to whether or not the company would let me come back with reduced hours and still keep me officially "full-time" if my PCP will release me. My STD payments would continue for the remainder of my hours each week.

    TerryS
  8. TerryS

    TerryS Member

    Yeah! I wasn't real thrilled with his ideas. He said "people don't need more than 8 hours of sleep per day". He suggested that my naps are preventing me from getting "quality sleep". All I know is that I get really sleepy and tired about 5 to 6 hours after I get up, and when I go to bed at night I am extremely sleepy. My PCP gave me Lunesta to help me get to sleep only because the pain was sometimes preventing me from going to sleep.

    Well, it's always possible I'm not getting into the deep sleep that I need. And it could be 'cause hubby has RLS and shakes the bed during the night. Even though I'm not waking up, it may be preventing quality sleep.

    I told hubby I was going to try sleeping in the guest room the next couple of weeks and I'll try to skip the naps...we'll see what happens!
  9. TerryS

    TerryS Member

    I copied it into Word so I can reference it.

    I read it carefully and it makes sense to me. Wonder if my PCP, hubby, and employer will buy into it?

    I've pretty much made up my mind to not go back to work full time. Well, I couldn't do it right now if I wanted to...but I think the stress of work is totally aggravating my condition. The last 16 months have been HORRIBLE as far as fatigue, pain, and weakness.

    I'm on short term disability right now. See my PCP next Friday to get re-evaluated. Not sure what he's going to do!

    TerryS
  10. angelstapleton

    angelstapleton New Member

    I have had fibro and fatigue since may . I will be going in on the 28th for more test. My pain doc did give me pain pills witch help with the sharp pains but the burning is still there. Try hard to get some rest. I find that very help full. Also A nice hot bath help to relaxs then climb in bed. Make it alot better. Listen to some soft music and try not to think about it so much.
    Hope this help some.
    Bless you Angel
  11. TerryS

    TerryS Member

    Apparently I definitely do have FM per the rheumy because of these tender points, but, even though the pain is horrific sometimes, the fatigue is much worse (to me). Two of my docs think I have CFS...my rheumy said that chronic fatigue syndrome/chronic epstein barr is a matter for infectious disease, so I'm seeing infectious disease on Wednesday.

    The last 16 months have been pure heck on me trying to keep up...now I'm down and I don't how much longer this can go on.

    The rheumy gave me samples of Provigil to take. I started today. I can say that at the very least I haven't had to take a nap today, but I sure didn't feel any energy from it!!!

    TerryS
  12. Redwillow

    Redwillow New Member

    Have you had a sleep study done?

    What came out of mine was that I never go into level 4 sleep! No wonder I am tired.

    Restless Legs Syndrome also showed up in the study. My husband said I didn't need an expensive test to find that out. (He has the bruises on his legs to prove it, LOL) No wonder my legs are always tired!

    I started sleeping in the spare room a few months ago. I hated the idea at first, cried a lot but after I settled down I realized that I sleep a whole lot better. So does my husband because I am not disturbing his sleep either.

    I really miss sleeping with my dear hubby, we have been married 29 years, but I am feeling a lot better with the rest.

    I also take 30 mg of amitriptyline at about 8:00. About 3 hours later I am ready for bed. I am getting a lot better rest and also a lot less migraines. The down side is I have gained about 30 pounds. :(

    hugs Marion
  13. TerryS

    TerryS Member

    No, I haven't had a study done. My rheumy didn't suggest it. He seems convinced that I am not getting quality sleep since I sleep 10 hours or more per night, plus have to take a nap, and still wake up unrefreshed.

    He told me to NOT dare take a nap during the day (he gave me Provigil to help with that) and also to not sleep more than 8 hours. He claims that if I do these things that the 8 hours sleep I get each night will be more of a quality sleep.

    So, today I woke up after my 10 hours, took a Provigil, managed to stay up ALL DAY, and now I have taken my Lunesta and am getting ready to go to bed. However, I refuse to set the alarm. I will sleep until I wake up by golly!!!

    Also, I am sleeping in the guest room for the next two weeks to see if it helps. Hubby has RLS or something like it. He shakes the darn bed have the night. Even though once I'm asleep I seem to stay asleep, maybe he's keeping me out of the deep restorative sleep that I really need.

    TerryS