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. Carole

    Carole Active Member


    It qualifies that you may actually have sleep apnea. You are jerking awake because you have quit breathing.
    Read my blog in this in this Article. You need an overnight sleep study done by a prof Pulmonary/Sleep specialist.
    Saved my life-Literally!!!! You Startle awake because your body is telling you you are not breathing.
    LISTEN TO IT!!!!

    Carole
     
  2. My sweet goofy Poppy - we found her wandering down a busy street post whelping. The animal rescue suspected a local back yard breeder, someone came to claim her but was rejected (I assume the breeders). I told them they could NOT put her down - call me first. They did. I took her home to foster - HA! next week she will have owned us for a year. She is my cuddle bug. Blessings!
     
  3. i do the jerk awake thing too, but have as long as I remember. Last time i had a sleep study, I didn't have apnea but did have a limb movement disorder I can't recall the name of (lol) and severe RLS. I have always talked in my sleep - I now often scream, yell curse and sing in my sleep - time for another study? I think so!
     
    SuZeeQ likes this.
  4. Oh my stars!! Pacing is everything! Yet it is not enough to avoid the wall crashing. Grrrrr! Exercise intolerance/ movement & stress intolerance are the bane (s?) of my existence. I just want to take my dogs for a walk in the park, for Pete's sake!
     
  5. HMM... Makes me remember something.
    Mono and EBV were going around like wildfire in 1985/6 at my graduate school in the hills of Berkeley. (AIDS was also rampant at the time.)
    So were other Herpes viruses which we we now know about - but they were only diagnosed back then if you were a person with AIDS and had a great healthcare team.

    I had a year long virus that made my chest feel full of hot oatmeal.I never went to the doctor - it was Kaiser a half hour away and I was too tired to take Bart all that way. Several of my good friends at school got diagnosed with EBV that year.

    After the virus, I began to have what I later learned to be peripheral neuropathy, first pain and heaviness in my lower legs and feet and elbows to hands, and then years later the numbness and tingling in the same places (sock and glove syndrome someone called it).

    I never thought about a connection between "the Year of Oatmeal in My Chest", followed by severe depression and the neuropathy and later the FIBRO/CFS that I ave always thought of as my first experience with Fibro or CFS which happened after a dog attack in 93.

    Now I wonder if got the HBV in the 80's, and a mild case of fms.cfs followed by a several year remission, set off again and the dog mauling resulting in a big flare that just never really went away again.

    I had the "oatmeal in the chest" virus again in 2006 and was diagnosed with EBV and HHV6 and mycoplsasma pneumonia. No CMV diagnosis ever, tho. (i lent myself to my rheumie and his friend the infectious disease specialist in the late 90s and let them test me for every crazy infectious disease they had the equipment to test for. All they found was signs of signs of herpes like viruses they couldn't identify.

    it is all interesting. and frustrating. Pretty please, can we all just get better, now?
     
    Carole likes this.
  6. Same here. I could sleep around the clock (and just get up for a bit here and there) if I just didn't have to work. and sometimes i just can't help it - I sleep and sleep until my body lets me wake up again.
     
    Mscoxenglish likes this.
  7. Carole

    Carole Active Member


    I have two in foster care that had been abused and neglected. They are wonderful dogs and do not deserve their treatment by Idiot dog fighters.

    So glad you got her and appreciate her.I rescue Doberman, Rotties and now have 2 Bulldogs Anna and Adele.

    Carole
     
  8. Carole

    Carole Active Member

    Joanna- Have you been checked for POTS or OI? It definitely fits your pattern. Still think the CPAP saved my life as I was waking 40 times during the night and having Palpitatons. I had quit breathing. Since I am on machine titrated to a low setting-
    The Palpitations have stopped.

    Just a suggestion.

    Carole
     
  9. Carole

    Carole Active Member

    Elaine-
    I graduated San Diego State -100 years ago then spent 1 year at Berkley. I became sick in 87 I think.
    Had a wonderful infectious disease dr. that was on the Aids research here and started me on Immune Globulin- In 3 weeks I started to get better. Took them for years . Until mfg Bayer sold the co to someone else. They changed the formula with a detergent and generic and it did not work. I still take the generic-made by Telecris but I may stop as I get a headache after sometimes.

    I remember when I first started with the Brand name by Bayer and the Dr. would always have me wait for 30 min to see how I did. My head would clear up in about 10 15 min. Amazing. This Dr. is retired now and went into Aids research.

    I am planning on going to an infectious disease Dr. here in the SE as there is no one here, that has a clue about anything that is going on.

    Carole

    Carole
     
  10. Abby

    Abby New Member

    Xyrem, (sodium oxybate) gives me the deep and restorative sleep, I cannot get on my own. It's lessened my pain, though it still exists. And now, I'm not stiff in the mornings the way I used to be. Being able to sleep again is a great blessing, and I'm all for more $ and more research. Hoping we'll find out what it is and how it's cured, before I die.
     
  11. Abby

    Abby New Member

    Oh, I forget, I also use a vpap machine and it's very helpful as I have both kinds of sleep apnea, obstructive and central, (where my brain forgets I have to breathe). Forgetting words is just awful, I love words and being bereft of them so often, it's frustrating. Lowers my self-esteem. Makes it hard to express myself and be understood. I've been ill with fm for about 30 years and spend a lot of my time in bed.
     
    SuZeeQ likes this.
  12. Cort

    Cort Founder of Health Rising and Phoenix Rising Staff Member

    Congratulations Abby...Stiffness upon waking is pretty common for me.

    Please consider reviewing Xyrem here - http://www.cortjohnson.org/forums/reviews/treatments/sleep/xyrem-sodium-oxybate.262/
     
  13. fdotx

    fdotx Well-Known Member

    It's great that xyrem is so readily available now - when I wanted to try it no one would touch it. Cort, in the review section did you mean other sleep enhancers should NOT be taken with it?
     
  14. Julie G

    Julie G Member

    I could have checked all the boxes, also. The FM heaviness is so prevalent, I often feel like I weigh about 500 pounds. I actually weigh 160. I also feel like there is a giant blood-pressure cuff on my limbs, particularly my legs. You know that feeling when they're taking your blood pressure, and it gets so tight you want to yell, "Stop, it's too tight!" That's how it feels. The brain fog is so unpredictable. I'll be talking about something with which I'm very familiar and just go blank on a word I knew half an hour ago or the day before! Sometimes it comes back after a moment, sometimes the next day. When I'm talking with people, I have to say, "Sorry, just having fibro fog on a word". Then I have to run through all the synonyms. It's especially weird because I have an English degree; I've always been a writer. With the CF exhaustion I feel like my bones are made of jello, that they cannot hold me up. When I've had to push to get through a very important event, I will lie in bed and review the things in my body that don't hurt: my throat, my stomach, my lungs, my intestines. That's about it. Even my face, jaws, gums, eyes, skull, every limb, every appendage, aches very deeply, and my skin hurts to the touch. Stiffness is intense and continuous. Everytime i stop moving it's like I'm wet cement, and the cement sets into a solid. I was always an athlete. I used to being so strong and limber when warmed up. It's like being a 110 years old, and I felt this way for 23 years. I got sick when I was 36. So lovely, huh?!!
     
    Last edited: Aug 14, 2015
  15. J William M Tweedie

    J William M Tweedie Well-Known Member

    You've hit on a very important idea, imo. "The snowball effect" - how does the length of time we suffer with fatigue and pain, the inactivity/lack of exercise, contribute to worsening of the condition(s)? My instinct tells me it's quite significant. In my case the fact that I have gained nearly 20lbs in the past 2 years is a major contributor to the more frequent and longer lasting episodes of extraordinary pain.

    It would be interesting to hear from others on this idea.
     
    Grace2U and Lissa like this.
  16. Grace2U

    Grace2U Active Member

    Prayed to die.....
     
  17. Grace2U

    Grace2U Active Member

    Perhaps this has been a topic that I missed, but I am curious to know how others first realized something was seriously wrong..... Anybody?
     
  18. Grace2U

    Grace2U Active Member

    I think you are right J William. This constant burning and aching has got to be taking a toll on our bodies as each day passes. I too have gained at least 20lbs in the past 2 years only. Now I'm in a losing mode.....who knows why? Crazy. If I remember correctly....the pain represents inflammation. Inflammation, over years and years, must be detrimental aside from the Post-exertional Malaise, and flu-like symptoms :( That's my reply :)
    (I'm glad I didn't accidentally press the "post reply" button too soon on this post!) Sorry about the earlier post Cort.
     
    J William M Tweedie likes this.
  19. Grace2U

    Grace2U Active Member

    It was July of 2007. I remember the "walk" I tried to take with my husband the day after being discharged from the hospital (with no diagnosis) because the doctor had convinced my husband that I needed the exercise. I struggled to achieve that recommendation (as I was always the highest of achievers), but within just a few minutes I needed my husband to literally carry me. My legs were like lead. It was, as I imagine, like having 100lb weights on each of my limbs.

    As I think back on those initial months...horrible flu-like symptoms...nervous, racing heart...heightened awareness of my stomach...feeling as though I was out of my own body...extreme fatigue....extreme sensitivity to sunlight...went from 154lbs to 107lbs within 7 months....No burning body pain yet....aching body pain at that point.

    I prayed to die.

    I believe that was the beginning of my CFS. What a journey for each of us since "the beginning", huh?

    I would like very much to hear of others' initial symptoms....Anyone?
     
  20. J William M Tweedie

    J William M Tweedie Well-Known Member

    Have you done anything specific to lose weight? I have been gluten free for months but it has not had any effect.
     
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