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![Profile picture of Zachary Pottle]()
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.
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![Profile picture of faeridream]()
@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 A great site, though no longer updated (unfortunately the woman who ran it passed away from ME quite a few years ago) – is HFME.org.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
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![Profile picture of eclecticzebra]()
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
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![Profile picture of brynsmommy38]()
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.
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![Profile picture of eclecticzebra]()
@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
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![Profile picture of William Slover]()
William Slover posted in the group Chronic Pain
It’s not too late to find the perfect gift for a Chronic Pain sufferer…
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![Profile picture of William Slover]()
William Slover posted in the group Chronic Pain
5 Ways to Avoid Holiday Burnout When Living With Chronic Illness
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![Profile picture of Suzzee33]()
Suzzee33 posted in the group Chronic Pain
Well turns out I don’t have my IC again. We have a hospital that sux here I was telling them I couldn’t pee that I had to bare down and go every 30 minutes so not much sleep for me
Went to the ER the Dr was rude and said they gave you antibiotics twice…I was like yeah but there not working. He told me to go home and take napoxsen . I was in…Read More6 Comments-
![Profile picture of EmilyXLC]()
Oh nooooo @Suzzee33 bless your heart. These doctors shouldn’t be practicing. HUG HUG HUG.
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![Profile picture of Suzzee33]()
@emilyxlc I am telling you. I hear stories all the time that people go to that hospital and get sent home and die..
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![Profile picture of eclecticzebra]()
Be the one who makes them change- file a formal complaint- Attny General etc. No way should any medical establishment have such a negative view from the general public. Sorry you are going through this 🙁
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![Profile picture of EmilyXLC]()
@eclecticzebra THIS. It’s hard to think straight after this kind of crap happens, but you are right.
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![Profile picture of Suzzee33]()
@emilyxlc yes it is. You get more depressed and feel hopeless
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![Profile picture of Suzzee33]()
@eclecticzebra I think I will. Thank you
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![Profile picture of glockdeadgorgeous]()
glockdeadgorgeous posted in the group Chronic Pain
Is anyone else dealing with Toxic Positivity from their support system?
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7 Comments-
![Profile picture of Suzzee33]()
Never heard about this before
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![Profile picture of Suzzee33]()
I will pray for you to get help and healing from this .
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![Profile picture of glockdeadgorgeous]()
@suzzee33 Thanks Suzzee! I know that my family being positive is them trying their best to support me!
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![Profile picture of EmilyXLC]()
It’s tough, @glockdeadgorgeous because everyone just deals with everything differently. I know the ‘fake it til you make it’ mindset works for some folks, but that just is not applicable to everyone. ESPECIALLY when it comes to chronic pain and illness. Hugs to you.
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![Profile picture of glockdeadgorgeous]()
@emilyxlc My problem right now, is that I am ready to come to terms with the fact and accept the fact that after my car accident and two surgeries, I now have a chronic pain condition and I just want help from them in creating a new life plan for myself and adujusting my goals to meet my new circumstances. They still want me to undergo…Read More
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![Profile picture of Suzzee33]()
@glockdeadgorge I read that article and never knew about this….so sad to have to go threw so happy your family understands..
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![Profile picture of EmilyXLC]()
@glockdeadgorgeous That is heartbreaking to hear– I am so sorry. People tend to like to cling to their previous perceptions of people for their comfort and convenience, even when it ends up hurting someone. I think this is why it is so important for those of us who experience chronic pain/illness to have our tribe of those who *truly*…Read More
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![Profile picture of EmilyXLC]()
EmilyXLC posted in the group Chronic Pain
Dealing with knee pain, friends? This might be helpful in determining what is going on for you.
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![Profile picture of William Slover]()
William Slover posted in the group Chronic Pain
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3 Comments-
![Profile picture of Suzzee33]()
So true
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![Profile picture of Megan]()
Truth
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![Profile picture of EmilyXLC]()
So sad and so true– but SO much good advice!
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![Profile picture of Rida]()
Rida posted in the group Chronic Pain
So this weekend I just learned about ASMR I made a little research, and I was surprised that something like this exist I don’t think this fit to met, but I was surprised that ASMR can help some people from chronic pain community, so what ASMR? according to NIH, ASMR is Autonomous Sensory Meridian Response (ASMR) is a previously unstudied sensory…Read More
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![Profile picture of Rida]()
An Esthetician Visit – Binaural Role Play – ASMR – Face Massage, Water Sounds, Soft Speaking https://www.youtube.com/watch?v=LMs-VIbc_48&ab_channel=ASMRrequests
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![Profile picture of EmilyXLC]()
I LOVE ASMR! I’ve had trouble sleeping since having kids– I guess my body just doesn’t want to fall soundly asleep in the event I am needed. After using white noise for years, I found ASMR. I’ve been listening to it to fall asleep now for a couple of years– there’s a YouTuber named ASMR Darling and her stuff knocks me right out, every time.
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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…Read More