Severe ME Day of Understanding and Remembrance: Aug. 8, 2017
Determined to paper the Internet with articles about ME, Jody Smith brings some additional focus to Severe Myalgic Encephalomyelitis Day of Understanding and Remembrance on Aug. 8, 2017 ...
Discuss the article on the Forums.

How To Explain CFS

Discussion in 'Lifestyle Management' started by Catjbro, May 19, 2016.

  1. Catjbro

    Catjbro

    Messages:
    62
    Likes:
    70
    Canada
    Hi
    I don't know how to explain to roommates/others the level of my exhaustion. They think I'm depressed. They keep telling me I'll feel better if I go sit in the sun. I'm almost bedridden except for bathroom, grab food and they don't even come to check on me or ask me how I'm doing since they say it's up to me to come out for company. Is there something I can show them? I don't have the energy to explain. Thx.
     
    Last edited: May 19, 2016
    lauluce, Comet, Mel9 and 3 others like this.
  2. Webdog

    Webdog Nothing left to say

    From "Beyond Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome: Redefining an Illness", a report by the Institute of Medicine of the National Academies (USA).

    http://www.nationalacademies.org/hmd/~/media/Files/Report Files/2015/MECFS/MECFS_ReportBrief.pdf

    "Between 836,000 and 2.5 million Americans suffer from myalgic encephalomyelitis/chronic fatigue syndrome—commonly referred to as ME/ CFS. This disease is characterized by profound fatigue, cognitive dysfunction, sleep abnormalities, autonomic manifestations, pain, and other symptoms that are made worse by exertion of any sort."

    "The primary message of the committee’s report is that ME/CFS is a serious, chronic, complex, systemic disease that often can profoundly affect the lives of patients. Many people with ME/CFS report difficulty completing everyday tasks, and at least one-quarter have been home- or bed-bound at some point as a result of their illness."
     
    lauluce, Comet, Mel9 and 3 others like this.
  3. Snowdrop

    Snowdrop Rebel without a biscuit

    Messages:
    2,895
    Likes:
    10,072
    There's this: on youtube. The visual presentation makes it very watchable while learning.
     
    Joh, GreyOwl, slysaint and 7 others like this.
  4. Jeckylberry

    Jeckylberry Senior Member

    Messages:
    125
    Likes:
    412
    Queensland, Australia
    Wow! That was amazing!
     
    Snowdrop likes this.
  5. Michelle

    Michelle Decennial ME/CFS patient

    Messages:
    172
    Likes:
    384
    Portland, OR
    I usually explain it as having the flu but that it never goes away, on top of a constant hangover and jet lag. In my specific case, I add "while being slowly electrocuted" as I also have severe, widespread electric, burning like pain that may or may not be due to this disease or may be fibromyalgia or something else entirely.

    (Actually, in my statement to the IOM panel, I stated that "My personal experience of having ME/CFS feels like permanently having the flu, a hangover, and jet lag while being continually electrocuted (which means that pain plays at least as much of a role in my condition as fatigue)" and lo, and behold, they quoted it on page 31 of the report to introduce the section on Burden of ME/CFS. Which I made me really pleased to know they actually read my comment given how much I crashed after!)
     
    lauluce, aaron_c, ebethc and 8 others like this.
  6. *GG*

    *GG* Senior Member

    Messages:
    6,111
    Likes:
    4,693
    Concord, NH
    I have the burning like pain as well, started in 2009 when I crashed. Went to Faulkner Hosptial in Boston area and had Lidocaine infused in my bloodstream. Knocked the pain down, 2 to 3 notches, and I was able to sleep and slowly heal!

    NH has Medical Marijuana now and have read that it can help with the Neuropathic pain, think that is what I have. I was actually in a study in Boston and was found to have small fiber polyneuropathy (SFPN).

    If it doesn't cost to much, willing to give it a shot. Guess Insurance is not covering MMJ, perhaps down the road, it would seem!

    GG
     
  7. Michelle

    Michelle Decennial ME/CFS patient

    Messages:
    172
    Likes:
    384
    Portland, OR
    I've tried MMJ a couple of times but have only found it slightly helpful -- and costly for that little bit! I'm in Oregon and have a cannabis shop across the street. I may give it another shot with some edibles but have to talk w/my PCP first as I'm on opioids and don't want to risk losing my access to them due to cannabis use.

    As all the studies of SFPN & FMS have come out, I've strongly suspected it being the cause of (at least some) of that widespread pain but haven't known if getting diagnosed would change treatment. Vasodilation/constriction play a role as well (I've often thought that the vasodilatory effect of opioids is the reason they work so well for me and, apparently, other ME/CFS patients). I'm watching with interest Fluge & Mella's work with nitric oxide donors.
     
  8. u&iraok

    u&iraok Senior Member

    Messages:
    427
    Likes:
    501
    U.S.
    I like to say that it is like you spent two non-stop days climbing a tall, steep mountain. You're not a climber and it was too much for you. When you get to the top you're exhausted, your muscles are sore, you can't think straight and it's difficult to do anything due to lack of oxygen and the altitude, you're dehydrated, dizzy and a little nauseaus and you are stressed out and wired due to lack of sleep and two days of near-constant fear of falling off the steep mountain.
     
    aaron_c, Comet, nenej2015 and 2 others like this.
  9. dhube32

    dhube32

    Messages:
    20
    Likes:
    27
    I too find it a daunting task to try and explain this disease to people who know nothing about it. My go-to, simple explanation is just that it feels like a combo of the flu and being hungover that never goes away. That seems to resonate with most, as almost all of us can relate to what those 2 things feel like. In my opinion its almost impossible to try and explain the severity and impact that this disease has to people who haven't experienced. We can't expect people to understand fully but rather expect them to be as compassionate as possible I guess.
     
  10. catherinejoy

    catherinejoy

    Messages:
    11
    Likes:
    8
    Firstly I find calling it ME rather than chronic fatigue easier - sadly, people tend to roll their eyes when they hear the fatigue word. I now describe the feeling of my regular flu like symptoms (at least every 2 weeks) as an impending doom feeling, and ask people to think how they feel when they're coming down with a really bad cold/flu and that's what I get so regularly. Its so frustrating to be pigeonholed as the "sick girl" and you want to explain and justify yourself but unless you've got something like a broken leg that others can put a label on, its near on impossible. I've only just found out that the last couple of years have in fact been ME, so up until recently I was always trying to find explanations for my symptoms whilst internally I was wondering if I was going mad/worrying about what people thought/getting anxious and of course then making things worse! The most recent person who asked me about it just got a link sent to them via text which explained ME/CFS and I said "read that and it should explain it"!
     
    TrixieStix likes this.
  11. lnester7

    lnester7 Seven

    Messages:
    2,338
    Likes:
    3,314
    USA
    I am like a car at night with broken alternator. Once the battery runs out the car stops and I have to wait for the battery to charge to keep going.

    I don't know how long the change will last and I also have to run out in a place where I can recharge it :rofl::rofl::redface::redface:
     
    catherinejoy likes this.
  12. Lesleyfielding

    Lesleyfielding

    Messages:
    1
    Likes:
    0
    If it's someone I know I will probably never see again I occasionally say I have MS because people have heard of that so it's saves hassle.

    To new friends, friends of friends, people I am likely to meet again I'm inclined tobe honest
    i
     
  13. catherinejoy

    catherinejoy

    Messages:
    11
    Likes:
    8
    Perhaps you could try showing them the link to a (reputable) site which lists the symptoms that ME/CFS sufferers I had. I used http://www.meassociation.org.uk/about/the-symptoms-and-diagnosis-of-mecfs/
     
  14. dhube32

    dhube32

    Messages:
    20
    Likes:
    27
    As many have already replied, I typically describe it as feeling like I have a bad case of the flu paired with a hangover 24/7. Normally I add that the severity fluctuates but that it is something I deal with everyday. By using this explanation I find that people are able to identify with what I'm experiencing to some degree as the large majority of people have had the flu and been hungover before. It certainly resonate a lot better with people than trying to explain my 13 year journey with the illness!
     
    Alvin2 and Jennifer J like this.
  15. Dechi

    Dechi Senior Member

    Messages:
    882
    Likes:
    1,625
    Now that I had my brain mapping done and I know I have hypoperfusion, moderate to severe, I have changed what I said to a very simplified version. I just say I caught a type of virus, called enterovirus (still has to be proven in my case, but the most probable cause), and that this enterovirus lives in the stomach. I compare it to the polyo virus (everyone knows polyo), saying it's very similar, but instead of attacking the spine and paralyzing people, it attacks the brain and causes serious neurological problems.

    I complete by saying there is no known treatment and it's a rare disease that even doctors don't know about.

    It works really well !
     
  16. lauluce

    lauluce as long as you manage to stay alive, there's hope

    Messages:
    388
    Likes:
    637
    argentina
    that's the way I explain it too, a mix between the worst flu and the worst hangover... the think is, I don't know exactly how a hangover feels like, since I'd never got one, as I don't drink alcohol, could anybody explain it to me? I just use the hangover example since I think most people have experienced one and I believes it at least involves feeling sick and nausea
     
  17. arewenearlythereyet

    arewenearlythereyet CURRENTLY MODERATED FOR NOT BEING SERVILE

    Messages:
    1,478
    Likes:
    7,559
    Banging head, feel like puking, can't function cognitively, feel like you've been beaten up, digestive issues, get whithering looks from everyone around you ......oh and normally bad breath (don't think that last one is similar though unless you gave actually puked)
     

See more popular forum discussions.

Share This Page