Chronic Fatigue Syndrome; The Game!

When someone asks me what Chronic Fatigue Syndrome (or Fibro) is, I never really know how to put it. I usually want to ask “How much time do you have?” I remember once while being crashed on our couch at home, my mom read off a list of CFS symptoms and 5 minutes went by and she was still reading them off. It was almost laughable. I ran out of fingers and toes marking the ones I had. Since I’ve got the time, I’m going to put the long list here. You can make a game out of it; every time you come across a symptom that you have, take a pill! See? Being sick can be fun. I’m going to keep this list in my back pocket, then it will be accessible whenever I need help explaining the effects of the condition. Feel free to do the same. Ready? Go.

Pain●generalized muscle pain ●new onset headaches ●aching, burning shooting pains anywhere in the body  ●arthragia without joint swelling ● frequent and intense pain in upper spine and neck area ●abdominal pain. Post-Exertional Malaise and Fatigue●Flu-like or hangover feeling following minimal physical or mental exertion, sometimes immediate, sometimes delayed several hours or a day or more and associated with immune activation, with sore throat, tender lymph glands, general malaise, increased pain and cognitive symptoms ●Feeling worse after exercise, rather than better ●Taking a prolonged time to return to pre-exertional function level ●Lack of endurance. Autonomic Manifestations Orthostatic Intolerance:●Neurally mediated hypotension (NMH) i.e. problems with regulation of blood pressure and pulse, especially when standing still; with symptoms of dizziness, light-headedness, slow response to verbal stimuli; an urgency to lie down ●Postural orthostatic tachycardia syndrome (POTS) i.e. Excessive heart rate during 10 minutes of standing still; blood pressure drop upon standing; light-headedness, dizziness, nausea, fatigue, irregular breathing, visual changes sweating, headaches. ●Delayed postural hypotension i.e. blood pressure drop after many minutes of standing, rather than upon standing ●tilt table test abnormalities Other autonomic manifestations: ●Palpitations with or without cardiac arrhythmias ●24-hour Holter monitor results with oscillating T- wave inversions and/or flat T-wave ●breathing dysregulation ●shortness of breath ●intestinal irregularities ●irritable bowel syndrome ●diarrhea ●constipation ●alternating diarrhea and constipation ●abdominal cramps ●bloating ●nausea ●anorexia ●urinary frequency ●painful urination ●excessive urination at night ●pain in lower abdomen. Immune Dysfunction●A general Ill or flu-like feeling, more frequent in the acute onset stage of the illness, less frequent in the chronic stages, most notably post-exertionally ●tender lymph nodes ●recurrent sore throat ●new food sensitivities ●new chemical sensitivities ●hyper-sensitivity to medications and their side- effects ●allergies. Sleep Dysfunction●frequent awakenings ●nightmares or agitated dreams ●non-restorative sleep ●variations in sleepiness and energy throughout the day ●hypersomnia (excessive sleeping) ●Restless legs syndrome ●periodic limb movement disorder (jerking or twitching during sleep). Neurological/Cognitive Symptoms●Easily confused ●Slow information processing ●Difficulty retrieving words●Occasional slurred speech ●Occasional dyslexia ●Difficulty with mathematics ●Easily distracted ●Forgetfulness (primarily short-term) ●Attention deficit ●Inability to focus vision and attention ●Inability to cope with fast-paced tasks ●Overall feeling of “spaciness” or “brainfog” Motor Disturbances:●Loss of muscular coordination ●Muscle weakness ●Muscle twitching ●Loss of balance and clumsiness Overload phenomena: ●hypersiensitivites to light, sound motion, odors ●Inability to block out background noise and focus on conversation●Informational overload with inability to multi-task ●Motor overload, with staggaring and weakness ●dizziness ●numbness●tinnitus (ringing in the ears) ●nausea ●shooting pain ●Overload may cause temporary immobilization. Neuroendocrine Manifestations ●loss of thermostatic stability (fluctuations in body temperature; fluctuations of cold and hot in different parts of the body; intolerance to extremes in air temperature; low body temperature) ●night sweats or other sweating episodes ●weight change, with loss of appetite in some patients or abnormal weight gain in others ●loss of adaptation to situations of overload ●anxiety●worsening of symptoms under increased stress (physical or emotional).

In other words: No, I don’t think that taking a magnesium supplement will make me all better. But thank you anyway. :)

Health, Happiness, Game On.

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24 thoughts on “Chronic Fatigue Syndrome; The Game!

  1. I love reading your blog! I have suffered for many years and i know all too well where you are coming from….choose joy and laughter!

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  2. “In other words: No, I don’t think that taking a magnesium supplement will make me all better. But thank you anyway.”

    This made me laugh out loud.
    Wishing you a decent night’s sleep and a good day tomorrow.

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  3. Extra fun is finding a medication that works wonders on taking care of my fibro pain while giving me more energy, only to cause such extreme depression that I ended up in the psych ward for wanting to kill myself! After 3 months of denying it because I didn’t want to get off the fibro meds I finally decided that it wouldn’t matter if I didn’t hurt anymore since it made me want to die anyway. =P Just another one of life’s cruel jokes!

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  4. I’m going to choose to laugh (instead of cry) because I have the cry days far too often. :) Sad thing is – there are many other symptoms that aren’t even included here (allodynia, neuralgia, etc, etc, and one of the cruelest jokes for someone with chronic fatigue syndrome – insomnia from also having fibro! lol!)

    I identify so much with this post & the comments – thank you for continuing to share, it’s so wonderful not feeling alone. :)

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  5. I read in a book once that made it easier to decribe our illness to other. I say it’s like having MS, alzheimers, and arthritis. Most people know about these illness far better than fibro and CFS. Although it doesn’t help explain how we feel like we have the flu 24/7!

    Love your blog and so glad I found it. I started with symptoms at 12yrs old. I thought I was about the only one that got it so young. Nice to know I’m not alone. I haven’t been able to work in 5 years because it keeps getting worse and I’m only 34! Glad you are still able to work and go to school. Thanks for all the laughs!

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    1. Hello Anonymous! And thanks for reading. Just so we’re clear, I am currently not working. I had to quit my job last year because of the illness. And I dropped out of school because of it too. I guess I should update my About page. But I’m never too sick for jokes! Hope you’ll be back. xoxo. Mary.

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    2. Hey Mary, love all of your posts. I was just wondering if you have lost many friends due to your condition? It’s kind of amazing to see how truly awful people can be in the face of adversity. I hope you’ve had an easier time of it than I…but would like to know how you deal? Thanks. :)

      -Molly

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      1. Hey Molly,
        I have definitely had hiccups with co-workers, friends and family due to the illness. It can be hurtful but honestly it is no ones fault. Some people get it and some people don’t, but it’s hard for a lot of people on the outside to understand because so little is known about it. Try not to take anything personally, and don’t make it your mission to make people get it. Those who matter will get it on their own time. What’s most important is that you trust yourSELF and keep your focus on health and happiness. I know it’s easier said than done, but you’re not alone. Keep your head up. We’ll get there.
        xoxo
        Mary

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  6. Haha, amen to that! I also love when people tell me “Well have you tried…” and then it is something like acupuncture. I always wanted to tell them that I have had this for 6 years, and I would sell my soul to the devil if it would stop my pain, but yes I have tried acupuncture! I hope you have a great day today, and get to do something fun you have been wanting to do for a long time, and more importantly I hope you don’t pay for that fun thing later!!

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  7. “Hey, you know, I really think giving up gluten would make this all go away,” a clueless reader comments. (Sorry, as someone with the same condition, I couldn’t resist a little sarcasm)

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