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The Basics of CFS

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haley38445
haley38445

 Can someone name off the basics of chronic fatigue syndrome? Like blood tests, energy levels, different types of brain fog and speech patterns . Any pain in general such as bone pain or muscle pain. Anything else about the disease that you can think of that most people have, I need to prove this to my mom I’m counting on you Guys. Thank you so much.

0 likes, 5 replies

5 Replies

  • jackie00198
    jackie00198 haley38445

    Posted

    The best way to prove that you have ME/CFS to your mom is to go to a well-respected website that lists symptoms common to the illness. Two such websites are the "solve me/cfs initiative" and the CDC (Centers for Disease Control and Prevention) website (type in "CDC me/cfs"wink. The huge red flag for this illness is post-exertional malaise (PEM). In other words, when you do an activity, you get fatigued way beyond normal. There are no blood tests for the illness. Brain fog can include such problems as difficulty concentrating and short-term memory loss. Types of pain often include joint and muscle pain, and nerve pain (which can include burning, tingling, and numbness). I've never heard of issues with speech patterns. 

  • julia24924
    julia24924 haley38445

    Edited

    Dear Haley's mum

    One of the hardest parts of CFS, is try ing to explain to loved ones and the general public the depth of torture this horrible disease causes. I will do my best at describing my CFS, everyone is different but I believe alot of people have similar symptoms to the ones I will describe.

    Fatigue is like walking through a swamp,, you have been in the swamp so long just walking or lifting a cup can be sore. You are feeling too exhausted to sleep .

    The pain is severe. I have bone, joint paint and when it flares up it can knock it out of action completely.

    I am very prone to picking up viruses because my immune system is weak.

    If I have had a long flare up I get fed up and borderline depressed.

    I also get wierd symptoms such as ongoing pins and needles that travel around my body, and numbness down one side of my body, The numbness causes walking difficulties.

    I could go on... But suffice to say CFS is a bloody nightmare. Thankfully I have a supporting husband, and I have managed to hold on to a job, because they cover sick pay. It has taken years to learn how to manage this. It is very important you believe your daughter.

    X julia

  • tracy47348
    tracy47348 haley38445

    Posted

    You can actually get a blood test for Epstein Barr virus , HHV6 and parvovirus. Especially if yours started with a bad flu. I seemed to have some sort of flu, every month after i had my first flu shot 27 years ago. My blood did test positive for all 3 of these. Alot of people have the EBV with ME/CFS.. I have dull achy pains all over, never ending fatigue, light ringing in ears constantly, brain fog-feel like im in a dream world constantly, glassy eyes, tender swollen lymph nodes. So i know mine is a retrovirus. Things that help- hot Epsom salt baths, good sleep, vitamins and herbs, maybe colloidal silver, still testing. Essential oils! Love frankincense and lavendar. Best of luck! Yes im also on the solve me/cfs on facebook.

    • lexilou32
      lexilou32 tracy47348

      Posted

      Hi Tracey, do you have any tips for getting to sleep and staying asleep? It's becoming a nightmare and making me feel worse than I already did during the day. I've had my first cfs clinic appointment moved forward from march to end of jan which has made me feel a bit better. It's so sad to say but im looking forward to my appointment more than christmas, thats how desperate I am to get a confirmed disgnosis so i can move forward with my life and learn to manage as best I can this horrible illness!!!

    • tracy47348
      tracy47348 lexilou32

      Posted

      Well i actually deal with sleep issues myself. And sleep is the number 1 help with ME/CFS. My main prob is getting 8 hours. I need it deperately. But i usually wake up at 6.5 hours!! ??? Wierdest thing . Most people can function with that. NOT ME! And the less, the worse i feel. Ive kinda always been like that, needing 8, but with a chronic illness its wayyy worse. Anyway i do get good sleep once in a while and love life , still being sick of course, but can handle it. I dont really want to get hooked on sleep pills , so i do everything natural. But alternate. I always try to take a half of a 3mg melatonin since my body is sensative to everything plus i dont want my bodu to become reliant and stop making it on its own. Therefore i do other things once in a while like Alteril. Has everything natural in one pill. I would still cut dose in half. When im desperate i do nighttime Tylenol. Half a capsule but not very often. I go thru so many procedures just to get sleep. Darkening curtains. Fan, ear plugs (loud cars. Ugh) turn phone off, no caffeine or chocolate. Also take calcium mag vit d capsule b4 bed. Best of luck.
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