Jackie-Collins

Zachary Pottle posted in the group Invisible illness

2 years, 8 months ago · updated 1 year, 10 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.

5 Comments
- dori-smith
  2 years, 8 months 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, 11 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 A great site, though no longer updated (unfortunately the woman who ran it passed away from ME quite a few years ago) – is HFME.org.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, 8 months 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, 12 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, 10 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 Chronic Pain

1 year, 11 months ago

It’s not too late to find the perfect gift for a Chronic Pain sufferer…

Holiday Gift Ideas for Those With Chronic Pain

verwhelmed by holiday shopping? Check out Pain Resource's 12 holiday gift ideas for those with chronic pain.

https://painresource.com/chronic-pain/holiday-gift-ideas-for-those-with-chronic-pain/

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William Slover posted in the group Chronic Pain

2 years ago

5 Ways to Avoid Holiday Burnout When Living With Chronic Illness

5 Ways to Avoid Holiday Burnout When Living With Chronic Illness

Does the holiday season tend to leave you feeling overwhelmed and emotionally drained? There's a word for that, and it's called holiday burnout.

https://painresource.com/chronic-pain/5-ways-to-avoid-holiday-burnout-when-living-with-chronic-illness/
Suzzee33 posted in the group Chronic Pain

2 years ago · updated 2 years ago

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 More

6 Comments
- EmilyXLC
  2 years ago
  
  Oh nooooo @Suzzee33 bless your heart. These doctors shouldn’t be practicing. HUG HUG HUG.
  - Suzzee33
    2 years ago
    
    @emilyxlc I am telling you. I hear stories all the time that people go to that hospital and get sent home and die..
- eclecticzebra
  2 years ago
  
  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 🙁
  - EmilyXLC
    2 years ago
    
    @eclecticzebra THIS. It’s hard to think straight after this kind of crap happens, but you are right.
    - Suzzee33
      2 years ago
      
      @emilyxlc yes it is. You get more depressed and feel hopeless
  - Suzzee33
    2 years ago
    
    @eclecticzebra I think I will. Thank you
glockdeadgorgeous posted in the group Chronic Pain

2 years, 1 month ago · updated 2 years ago

Is anyone else dealing with Toxic Positivity from their support system?

What is Toxic Positivity?

Article shared with me on Toxic Positivity

https://www.greatlakespsychologygroup.com/trending-topics/what-is-toxic-positivity/?utm_source=cc&utm_medium=email&utm_campaign=the-current_email_toxic-positivity_9-13-22

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7 Comments
- Suzzee33
  2 years ago
  
  Never heard about this before
- Suzzee33
  2 years ago
  
  I will pray for you to get help and healing from this .
  - glockdeadgorgeous
    2 years ago
    
    @suzzee33 Thanks Suzzee! I know that my family being positive is them trying their best to support me!
- EmilyXLC
  2 years ago
  
  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.
  - glockdeadgorgeous
    2 years ago
    
    @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
    - Suzzee33
      2 years ago
      
      @glockdeadgorge I read that article and never knew about this….so sad to have to go threw so happy your family understands..
    - EmilyXLC
      2 years ago
      
      @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
EmilyXLC posted in the group Chronic Pain

2 years, 1 month ago

Dealing with knee pain, friends? This might be helpful in determining what is going on for you.

Chronic Knee Pain: Your Questions, Answered - Pain Resource

Many people, regardless of age, occupation, or medical history, end up having chronic knee pain at some point in their lives

painresource.com
William Slover posted in the group Chronic Pain

2 years, 2 months ago · updated 2 years, 2 months ago

https://painresource.com/chronic-pain/isolating-loneliness-living-chronic-pain/

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3 Comments
- Suzzee33
  2 years, 2 months ago
  
  So true
- Megan
  2 years, 2 months ago
  
  Truth
- EmilyXLC
  2 years, 2 months ago
  
  So sad and so true– but SO much good advice!
Rida posted in the group Chronic Pain

2 years, 2 months ago · updated 2 years, 2 months ago

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

Autonomous Sensory Meridian Response (ASMR): a flow-like mental state

Autonomous Sensory Meridian Response (ASMR) is a previously unstudied sensory phenomenon, in which individuals experience a tingling, static-like sensation across the scalp, back of the neck and at times further areas in response to specific triggering ...

www.ncbi.nlm.nih.gov

2 Comments
- Rida
  2 years, 2 months ago
  
  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
- EmilyXLC
  2 years, 2 months ago
  
  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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