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Zachary Pottle posted in the group Invisible illness

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.

5 Comments

dori-smith
2 years, 1 month ago

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…Read More
- faeridream
  1 year, 5 months ago
  
  @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 A great site, though no longer updated (unfortunately the woman who ran it passed away from ME quite a few years ago) – is HFME.org.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…Read More
eclecticzebra
2 years, 1 month ago

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…Read More
brynsmommy38
1 year, 5 months ago

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.
- eclecticzebra
  1 year, 3 months ago
  
  @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…Read More

William Slover posted in the group Invisible illness

“You Don’t Look Sick”: How To Cope With Invisible Illness

Learning how to cope with invisible illness is important. Finding the right doctor, support groups, and resources should be your first step.

https://painresource.com/invisible-illness/you-dont-look-sick-how-to-cope-with-invisible-illness/

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Lily Stacy posted in the group Invisible illness

This is a cool website all about invisible illnesses. And they have a specific page about ableism, it’s a very interesting read if you have time.
https://www.invisibledisabilityproject.org/call-out-ableism

Call Out Ableism - Invisible Disability Project

Call out ableism with Disability Pride

www.invisibledisabilityproject.org

Lily Stacy posted in the group Invisible illness

A recently published study from researchers at the Cleveland Clinic has found that sildenafil, an approved drug for erectile dysfunction, popularly known as Viagra, can help in treating Alzheimer’s disease.