chronic fatigue syndrome without the fatigue

Discussion in 'Fibromyalgia Main Forum' started by valliali, Dec 5, 2008.

  1. valliali

    valliali New Member

    hi all-
    i have been diagnosed with POTS for awhile now, and after visiting my first POTS specialist yesterday, am now undiagnosed with POTS. i saw this coming as i've always questioned my diagnosis. but now i am back to square one, seeking a diagnosis.
    i have always thought i had way more symptoms of chronic fatigue than my original diagnosis. however, i don't have fatigue. sometimes i'll feel really tired after exercising, but a quick 20 minute nap completely fixes that.
    i got sick after living in africa, and it's been about two years now. i'm 25 and had been perfectly healthy prior to the sudden onset of all kinds of symptoms.
    from what i understand about cfs, it seems there are many systemic problems that are thought to cause it, ranging from genetic disorders to infectious diseases. i suspect i have similar issues, but wonder why then, i don't have the chronic fatigue. are there people diagnosed with it who don't have the fatigue, like ever?
  2. findmind

    findmind New Member

    I noticed no one had responded to your post...probably because we would all say "NO!", there no CFS/ME without chronic fatigue, LOL.

    If you are able to exercise and recover after a 20 min. nap, I dare say, you do not have the real, bonafide "CFS"/CFIDS/ME, that's for sure. Most of us cannot exercise at all without paying for it dearly, with utmost exhaustion that might not even begin for 24 or more hours.

    There is a Canadian Criteria for M.E., you can Search here for it or online. It is the most definitive to date for the illness.

    You didn't mention any symptoms; if you would, maybe you could get more answers from people here.

    I highly question why, after living in Africa, you were suddenly sick; have you asked any dr. to find out what other African diseases you could have been exposed to while there?

    Hoping other join in here....wishing you the best, too.

  3. valliali

    valliali New Member

    thanks, findmind.
    i know it seems very unlikely that i would have CFS without the fatigue. but i'm pretty much at a loss. i had been diagnosed with POTS - Postural Orthostatic Tachycardia Syndrome - about six months ago, but have since seen a specialist at stanford who has ruled that out.
    most of my symptoms are aligned with a dysautonomia. i have developed, suddenly, a paroxysmal supraventricular tachycardia, have inappropriate sinus tachycardia, sudden debilitating panic, major GI issues, vision problems, random pains and twitches, body temperature irregularities, severe facial flushing, shortness of breath sometimes, tremors, swollen finger joints and swollen lymph glands ---- just to name a few!!!
    i had absolutely no previous health problems prior to living in africa, and got sick over the course of a couple of months about two or three weeks after returning to america. i have not really been tested thoroughly for infectious diseases, but have finally been referred to an ID doc at stanford.
    i have been active on the dysautonomia forums, since that was my original diagnosis. i have always doubted my diagnosis because i do not meet the criteria for pots, and have often felt like i was more compatible with chronic fatigue syndrome because of its immune problems. however, like i mentioned, i do not have the debilitating fatigue. my heart goes out to all you who do struggle with that. i cannot imagine adding severe fatigue on the top of all my other symptoms. however, some of the suspected causes of cfs are ones that i also suspect in my case - chronic infection, methylation cycle block, etc.
    so i'm hoping to learn more about immune system dysfunctions in hopes of finding an answer for myself! i don't have a "home" with any diagnosis!
  4. UsedtobePerkyTina

    UsedtobePerkyTina New Member

    I got sick gradually. My first symptom was not fatigue. I had problems with fatigue only on first day of period. Had severe headache. I had PMS.

    So, I tried different birth control pills. Emotional roller coaster got better, but the fatigue and headache on first period day continued. I lived with it for months.

    Then it started getting more days. My doctor had me try estrogen on first three days of my period. He said my estrogen was dropping too deep and too quickly.

    Well, it continued. I just lived with it. Then I noticed that I had energy during the week, but had only enough energy to clean house on weekends. No energy for hiking or canoeing or walking my big lab.

    I also noticed cognitive problems. And this began occurring at different times of the month.

    After three years of gradually getting sick, on July 16, 2006, I plummeted. Extreme fatigue, mental fog leaving barely able to talk at times, pain started, and more.

    I had CFS the whole time. But there is a range of mild, medium and severe. If it is mild, then you may think, as I did, that the fatigue you feel is within a range of normal. I just thought I was getting older, working too much, etc.

    So when people tell me they think they may have CFS, I don't doubt them. Maybe they have a mild form. You don't have to be bedridden to have this illness.


  5. valliali

    valliali New Member

    hi guys, thank you so much for your insight.
    it is super hard to tell what is going on with me. i don't believe that i have a mild form of cfs, as i have so many other symptoms, many of which are quite severe, that i can't imagine in a million years this would only be a mild case. but it was a good thought. i just feel pretty confidently that if it was cfs, it would be a more moderate to severe problem. yet, it is very odd that i have all these hundreds of other issues, but no fatigue. i feel like, if i didn't have a heart arrythmia and shortness of breath, that i am always up for hiking, biking etc. like i'll feel totally up for a major activity, until my heart starts kicking and then all the other symptoms come on.
    i also have really significant cognitive changes. i am only 25 so shouldn't be experiencing any cognitive changes that come with age. but i am constantly forgetting things, and i am finding myself getting seriously confused by very very simple tasks. i also am now mispronouncing words, and i can't "read aloud" because i for some reason, cannot repeat out loud what i am reading. this is SUPER unusual for me.
    however, alas, no fatigue.
    i have been told that the underlying causes of cfs and dysautonomias and fibro and other chronic "syndromes" are usually very similar. however, it is interesting that no matter what each other's causes are, everyone who fits into one of these diagnoses has the same reaction. everyone with POTS has a major increase in heart rate upon standing. everyone with CFS has fatigue. and so on and so on. so no matter what the cause (virus, amino acid deficiency, etc), everyone diagnosed with these syndromes does have the same major issue. not everyone with CFS has the same symptoms, but everyone with CFS has fatigue.
    i have to wonder why i have so many of the same issues, but i don't belong anywhere. it just seems really strange to me.
    anyways, i'm just thinking out loud. i have been seeking a diagnosis for two years now, finally got one, was thrilled to have one, learned more about it and realized that i didn't have it, just had a specialist throw it out the door, and now i am back to square one. i had so many other plans for my life at this point, and i was hoping that after two years of set-backs, i could at least be on my way to finding appropriate ways to treat or manage whatever is going on. but now i'm just back at having a huge list of unusual symptoms and no diagnosis.

    thanks for listening, guys. my threshold for frustration is pretty maxed out, so i am just venting.