Poll The Fatigue Poll: What Types of Fatigue Do You Experience?

Discussion in 'Symptoms' started by Cort, Jun 10, 2015.

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What Kinds of Fatigue Do You Experience?

  1. (I have ME/CFS) - ‘Post-exertional fatigue (or malaise)’

    148 vote(s)
    71.5%
  2. (I have ME/CFS) - ‘Brain fog’

    129 vote(s)
    62.3%
  3. (I have ME/CFS) - ‘Wired But Tired fatigue’ - worn out but unable to relax

    78 vote(s)
    37.7%
  4. (I have ME/CFS) - ‘Molasses Fatigue’ – characterized by a feeling of heaviness in the limbs

    75 vote(s)
    36.2%
  5. (I have ME/CFS) - Flu-like fatigue

    49 vote(s)
    23.7%
  6. (I have FM ) - ‘Post-exertional fatigue (or malaise)’

    35 vote(s)
    16.9%
  7. (I have FM ) - ‘Brain fog’

    29 vote(s)
    14.0%
  8. (I have FM ) - Wired But Tired fatigue’ - worn out but unable to relax

    19 vote(s)
    9.2%
  9. (I have FM ) - Molasses Fatigue’ – characterized by a feeling of heaviness in the limbs

    28 vote(s)
    13.5%
  10. (I have FM ) - Flu-like fatigue

    15 vote(s)
    7.2%
Multiple votes are allowed.
  1. Cort

    Cort Founder of Health Rising and Phoenix Rising Staff Member

    That's apparently what I read somewhere - I have to say I have no idea where but it might have been Drugs.com
     
  2. Cort

    Cort Founder of Health Rising and Phoenix Rising Staff Member

    Not fun Julie!
    Something has really gone wrong!
    Is your pain worse when you're fatigued? Do you think that your pain is a function of your fatigue to some extent. That is if you have more energy do your pains diminish? And when you have less energy they increase or is there no relation?
     
  3. Cort

    Cort Founder of Health Rising and Phoenix Rising Staff Member

    That would be a great project. I'm going to put that on my list. It was the worst time for me - that's for sure.
     
  4. Cort

    Cort Founder of Health Rising and Phoenix Rising Staff Member

    I think it does. I'm about ten lbs from where I want to be - just can't seem to get that weight off but for me I think it's more the increasing stiffening off the muscles and the affects on my joints. I feel like things are continuing to contract and I do not see good days ahead. I am battling back with stretching. I hope to God it works otherwise I'm not going to be in good shape pain wise.
     
    J William M Tweedie likes this.
  5. J William M Tweedie

    J William M Tweedie Well-Known Member

    I was diagnosed with Polycythemia Vera (PV) in early 2011. Confirmed with a bone marrow biopsy the Dr. started me on Hydroxyuria. After a month I ended up in hospital with a life threatening fever; delirious, I have no recollection at all of the first 2 days. After 15 days and every test the Drs could think of, the fever dissipated. The Drs never found a cause. (PUO) I was convinced it was caused by the Hydroxyuria and despite yet another specialist's advice, I refused to continue taking it, opting for weekly blood draws (450-500ml) to relieve the pressure. My own research and months of insisting that 2 special tests be done, my Dr finally acquiesced and when the results came in, they were negative. Drs were astonished. The PV had mysteriously disappeared but the fatigue that had accompanied it never went away. I struggled through another year of work but by the end of 2012 I couldn't continue. Fibromyalgia developed over the past year and has gotten progressively worse. We have to keep whatever pressure we can on the funders to get answers to this complex and befuddling disease.
     
    Merida and Grace2U like this.
  6. susanna

    susanna Member

    I find that the post-exertional symptom is not a separate thing- it is all of the things listed and more. It is also not just fatigue. Using the 'f' word just confuses ME with the fatigue that accompanies all sorts of conditions. Researchers should be more discriminating in relation to PEM symptoms (and all ME symptoms for that matter).
    With PEM, fatigue is the least of my problems, I get the molasses feeling, pain, stiffness in muscles, loss of blood for to the brain (I can almost feel this) leading to brain fog, at some point hunger, thirst, feeling cold, muscle twitching, tired but wired, unable to get to sleep that night, sensitivity to sound. Probably more. These are all part of my PEM. The symptoms vary over a number of days. Day 3 is usually the worst, the second day being better. Most of these are nothing to do with exertion in normal people.
    I'd like to see researchers look at what might underlie these symptoms after exertion, instead talking about 'fatigue' which has caused so much confusion. this would be an elaboration of the Snell et al studies.
     
    Grace2U and Dee VanDine like this.
  7. Dee VanDine

    Dee VanDine Member

    definitely have hypersomnia, as well as all the symptoms listed in the poll. it was hard to choose.
     
    Mscoxenglish likes this.
  8. Dee VanDine

    Dee VanDine Member

    yes, that's what my doctors call "hypersomnia".
     
  9. Dee VanDine

    Dee VanDine Member

    i was initially diagnosed 25 years ago with CFS. that was before fibromyalgia was a thing. later, i was diagnosed with fibro. and, i'm just now finding out about the ME label or ME/CFS. i can't say where the symptoms come from. then there is osteoarthritis, degenerative disc disease, nerve pain, and infections (upper respiratory mostly). they all seem to blend together for me.
     
  10. zenmom

    zenmom Member

     
  11. MK Gilbert

    MK Gilbert New Member

    I get that "tightness in the chest" too, esp if I have too much caffeine which I'm very sensitive to. I've had times when I've slept too much (I normally seem to need about 10 hrs/night, but don't often nap as I have so much trouble getting to sleep anyway...IF I nap I seem to need a 3-hr nap! I get all the types of fatigue, I guess...)
     
  12. Carrie Conley

    Carrie Conley Moderator

    I checked 3 but could have easily been 5. When I have a major fibro flare I feel like I am coming down with the flu. Never know what is going to happen. 9 times outta 10 its fibro. I have learned the difference over the years.

    Brain fog is another thing I deal with alot. Especially in the morning. It can take me most of the day to get out of it and be able to do anything. I dont dare drive anywhere til it is gone.
     
  13. susanna

    susanna Member

    Kate, I get terrible contraction in the chest too. Chest muscles seem to freeze up. Feels like I'm getting a chest infection. It has expanded to the back and neck muscles. I don't hear this complaint many times. Loosening the muscles by rolling on tennis balls helps a bit. This was part of my earliest symptoms. It is a big part of PEM when I have used my arms in a raised position.
     
  14. susanna

    susanna Member

    Does anybody experience craving for sweets pretty soon after exertion? I do, also thirst. This pilot study, although small may cast some light on this symptom? I hop they follow up these findings:
    Abnormalities of AMPK Activation and Glucose Uptake in Cultured Skeletal Muscle Cells from Individuals with Chronic Fatigue Syndrome Audrey E. Brown, David E. Jones, Mark Walker, Julia L. NewtonPublished: April 2, 2015
    DOI: 10.1371/journal.pone.0122982 http://journals.plos.org/plosone/article?id=10.1371/journal.pone.0122982
     
  15. susanna

    susanna Member

    Dee and Folk, I feel as if I could sleep all the time, but if anything I have trouble sleeping except for short periods, broken sleep at night, etc. The other side of the same coin? the short sleeps are refreshing though, for a short time.
     
    Merida likes this.
  16. ladylinda

    ladylinda New Member

    I agree with all of that and glad you added the "feels like you've been drugged". I get that a lot too.
     
    Merida likes this.
  17. Laura L

    Laura L Member

    I have just started xyrem about 5 weeks ago. It has given me back stamina and energy, I lay down a lot less and malaise and IBS has greatly diminished. I can do so much more, feel like I'm rejoining the human race. However I am occasionally getting a tight chest feeling and my POTS had worsened a little. I take a beta blocker for this but still am concerned about it. My doc and jazz pharma don't seem concerned. Right now I'm on 5ml a night going up to 6 shortly, I am currently doing 3 days on xyrem then switch to 2 days on lunesta bc of the POTS and chest side effects. I was wondering did u experience similar side effects?
     
    Merida likes this.
  18. fdotx

    fdotx Well-Known Member

    Has anyone on Zyrem tried trazadone? It works well for me and like Zyrem is supposed to increase deep sleep whereas meds like ambien can actually fragment your sleep.
     
  19. Laura L

    Laura L Member

    In 2012 I used a combination of trazadone 50 mg with .1.0 clonazapam and horizant. Got me 6 hrs fragmented sleep each night, but started to feel much better. Then I weaned off clonazapam. One day I spent too much time in 100 degree heat which caused a crash for 4 months. I think if I stayed on clonazapam this may not have happen. I will say tho, on that combination I did feel much better. When/if I go off xyrem I will definitely go back to trazadone and use Lunesta sleep cocktail. I build up tolerances to drugs so I try to mix it up here and there. I'm hoping the POTS and chest tightness side effects diminish when taking xyrem.
     
  20. Upgrayedd

    Upgrayedd Active Member

    As I sit here, I can barely think of the words to describe my fatigue. Drained, fogged, heavy-limbed, tired-but-wired, yes, yes, yes, yes...

    Usually, I'm mostly okay in the mornings, and I get worse as the day goes on, especially in the afternoon hours. But today, I'm sitting here at work, worthless, staring at my computer screen. I think it's partially due to a hangover from taking extra Elavil to sleep last night.

    Sometimes I go through a period when sleep comes almost normally, but then it goes away and the insomnia returns. I used to use Trazodone, but it stopped working reliably, so I switched to Elavil. Last night, 25mg made me sleepy, but brought no sleep. After several hours of listening to my wife and dogs sleep, I took more, and I did finally sleep soundly until morning. But now I feel like I'm still asleep, the walking dead, helpless and hopeless.

    Without meds, I don't sleep and I'm exhausted and frantic all at once. With meds, I sleep, but I still don't feel well. Just feeling like crud.
     
    Merida likes this.
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