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What is the most frustrating or difficult aspect of living with fibromyalgia?

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Courtney_J

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09/07/2020 at 4:38 PM

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Courtney_J

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Last activity on 08/08/2022 at 11:09 AM

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1,339 comments posted | 22 in the Fibromyalgia Forum

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Hello everyone,

How have you been? emoticon cute

As you know, fibromyalgia is a very individual disease and affects everyone differently.

What is the biggest challenge you face while living with fibro? Is it the pain, the fatigue, the stiffness, the brain fog, the poor sleep? Or is it something else? Have you had to change aspects of your daily life or routine because of it? How do you cope with these challenges?
@Coolahrens‍ @cmmusiclover‍ @Annleelee‍ @Michweav‍ @JDziewior‍ @jacquiblu2‍ @PlayMeAVolta‍ @Jojo37‍ @Fox38‍ @Crystalsue‍ @cindy.wms1962‍ @Robnjill2004‍ @Savmareli74‍ @NanaT06‍ @Karma4334‍ @barboh‍ @Endlesslyhopeful‍ @Vpolite62‍

Feel free to share your stories and experiences here!

Take care,
Courtney

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CharlieE

09/11/2020 at 5:02 PM

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CharlieE

Last activity on 01/12/2024 at 12:47 AM

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17 comments posted | 15 in the Fibromyalgia Forum

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@Courtney_J I think for me I struggle with the fact that no one can see fibromyalgia, so I feel like people look at me like I'm making it all up and I'm lazy. I miss the "old" me before this all started, I used to be active, I'd go running, I'd go out with my friends, I'd stay up late with my boyfriend, etc. I feel like my life is over in a sense. Nobody really understands unless they have an invisible illness.

What is the most frustrating or difficult aspect of living with fibromyalgia? https://www.carenity.us/forum/fibromyalgia/living-with-fibromyalgia/what-is-the-most-frustrating-or-difficult-aspect-of-living-with-fibromyalgia-2459 2020-09-11 17:02:51

toomuchpain

01/14/2021 at 6:41 PM

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toomuchpain

Last activity on 10/18/2022 at 6:00 PM

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@CharlieE YES! Everything that you said! My journey to a diagnosis was a nightmare, I had to basically FORCE my doctors to take me seriously and LISTEN to what I was saying. There is not enough awareness of fibromyalgia in the medical community and then the community at large!

Coco317

07/29/2021 at 5:15 AM

Coco317

Last activity on 09/29/2024 at 7:59 PM

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It's so overwhelming. The unpredictably. I actually had cfs x2 years, age 14-16 was homebound from school. Somehow I had remission then disabled from work and school since 1992. I was very active, overachiever, had plans and goals I could almost touch.

So it's frustrating. I've lost friends bc symptoms are unreliable, I can't afford expensive restaurants or disbelief of my conditions.

I'm very blessed I've had excellent doctors and I'm thankful they know the truth and are very knowledgeable and supportive 🙏

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Armor2

05/13/2023 at 5:38 PM

@HelloKitty I started taking kratom when I was diagnosed with cervical dystonia, it means I have constant pulling of my neck and shoulder muscles. Botox is the primary treatment , 6 to 8 shots targeting muscles but its hit and miss. I told a friend about this and he told me about kratom, so I went to a kratom shop and talked to the owner. He learned I was an Army Veteran and sold me some capsules. Unbelievable the kratom knocked out the pain and relieved some of the spasms and pulling that was 5 years ago, and I am still taking it for chronic pain. I have found the vendors to trust and a fbook website to share experiences with others. Like all things kratom must be handled with common sense, and reading info on the web helps educate us all. IT IS THE ONLY THING THAT HELPS WITH MY CHRONIC PAIN

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MountainMan

Edited on 03/25/2021 at 8:23 PM

Yes I agree. Im on morphine and Hydrocodone/Acetaminophen and yours as well. I have some others also. If I want to work in the back yard, I am sleep mode if I set down. The next morning and at night is paying with great pain. Its a hard road in many ways. We have to keep going best as we can. Have a smile and good day to you. I have the stimulator too.

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Armor2

05/13/2023 at 5:38 PM

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MountainMan

Edited on 03/25/2021 at 8:23 PM

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