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

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Patients Fibromyalgia

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Posted on

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

Beginning of the discussion - 9/11/20

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


Posted on

@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?


Posted on

@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!

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


Posted on

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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