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    Zachary Pottle posted in the group Invisible illness

    2 years, 1 month ago · updated 1 year, 2 months ago

    Does anyone know anyone or have any experience with chronic fatigue syndrome? I feel like it just has such a negative connotation from everyone I’ve mentioned it to. People will be like, “I’m always tired too,” or “we all get tired,” which I think is so wrong. Curious to hear what you all think.

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    • I’ve had (been diagnosed with it) since 2009, so I get this a LOT. It’s really frustrating, because people hear “fatigue” and associate it with “tired” when in reality they’re two very different things. Just like you can be “tired” and not want to sleep, you can still be tired and not fatigued.

      ETA: because I thought hitting enter would take me down a line, not post the thing)
      CFS/ME is more than just fatigue. It’s an all over body condition and people don’t *realize* that and it’s SUCH a pain, because you can be like “well, I have CFS” and they’re like “oh, you’re always tired?” and you’re like “well, kind of.” People literally have no idea how life changing it is. I think that is the worst thing about getting comments about it – people assume it’s JUST fatigue/tiredness when it also means brain fog/gastro issues/chronic pain and other things.

      • @zachary-pottle @dori-smith Fellow ME sufferer here! The name CFS is such a damaging term. A great site, though no longer updated (unfortunately the woman who ran it passed away from ME quite a few years ago) – is HFME.org. Even though it was written a decade ago, there are so many helpful & educational articles and I could relate to so much of what they were saying – I wasn’t crazy! I’m 42 and have been through so many nightmarish visits with doctors who accused me of everything from “wanting to stay home with mom” as a kid, to drug-seeking as a young adult. I’m too exhausted right now to write too much more, but here’s hoping Long COVID may provide some answers – the similarities between that and myalgic encephalomyelitis are stunning. (https://www.massmecfs.org/news-events/823-mecfs-and-long-covid-emerging-similarities-and-why-it-matters). Just want to recommend a few really great websites to check out on ME off the top of my head: HealthRising.org, HFME.org, TheMighty.com, CFSselfhelp.org, MassMECFS.org.

    • Yes it’s on my far too lengthy list of issues, usually goes hand in hand with Fibromyalgia- mess on paper..gah! It is wrong, those who are not true spoonies likely will never get it. Between the Fibro, EDS, CFS, AG, and a small child I keep the coffee industry booming LOL That, you don’t look sick and.. try yoga grrr I used to keep The Spoon Story printed out and hand them to people when they said something assie like that. A few asked about my illness and simmered down with the sarcasm, the EDS hypermobility is the only visual aid I’ve got lol Really depends on who the nay sayer is, strangers I really don’t give a hoot other than an awareness stint. Family gets the story printout 🙂 It’s really a devious form of gaslighting. I have met people who made up business cards or slightly bigger cards with a site for reputable information on their disorder and a lazymans synopsis – I’m thinking of doing this for Alpha-Gal allergy actually 🙂

    • I was diagnosed with Pots disease 2 years ago and I have a feeling I also have CFS. But I don’t know how to go about being diagnosed.

      • @brynsmommy38 Do you by any chance have a hypermobility syndrome of sorts? POTS and CFS typically goes along with Marfans, EDS etc.. As far as I know there is no specific testing for CFS, just the totality of other testing, diagnostic criteria, sleep studies etc. I’d simply ask my doctor flat out if it’s a possibility because of.. XYZ symptoms…Just make sure you are heard, understood and not dismissed on the topic…Keep us posted 😉

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