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A MyFibroTeam Member asked a question 💭
Florence, SC

How many of you could sleep 12 hours, wake up, n feel like you need to go back to bed a few hours later.what helps combat this feeling ?

January 7, 2016
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Answer Summary

Members deeply related to the exhausting reality of sleeping long hours yet still feeling unrested, with many describing how poor sleep... Read more

Members deeply related to the exhausting reality of sleeping long hours yet still feeling unrested, with many describing how poor sleep quality from chronic pain makes no amount of sleep feel sufficient. Several members shared strategies that provide temporary relief, including caffeine (coffee or pills), fruit smoothies, chocolate, movement throughout the day, melatonin, ZZZQuil, deep breathing, and medications like Neurontin or Elavil, though most emphasized these offer only partial help and the fatigue remains constant. A recurring theme was the frustration of disrupted sleep patterns typical of fibromyalgia, with one member's sleep studies showing zero REM sleep and constant awakenings, and the emotional toll of an invisible condition that affects work, relationships, and daily functioning while facing skepticism from medical professionals and loved ones.

A MyFibroTeam Member

Absolutely. It doesn't matter how much sleep I get, I am always exhausted. Have not found a solution for this.

January 7, 2016
A MyFibroTeam Member

MarthaSessionsDavis Oh my, it is so discouraging when people don't understand what one goes through when fibro is involved. Ultimately it is the university's loss that they've never used your expertise again. But a negative attitude like that is hard to take - and understand, isn't it.

January 10, 2016
A MyFibroTeam Member

DebbieGaethGrigsby Melatonin does seem to help but I do wish I could get more than 3.5 hours of deep sleep per night. I'm beginning to learn to deal with the lack of deep sleep issue - but, some days I find I an really tired - can't concentrate on writing (storyline, dialoguing & etc). Fortunately, my editor is understanding. I've missed at least four deadlines for my next manuscript . . . .

January 9, 2016
A MyFibroTeam Member

I know what you're talking about MarthiaSessionsDavis. People just do not understand what a person with fibro goes through on a regular basis. My elderly doctor told me that what I was experiencing was all in my head - then he said "You have fibro" - then he said "There's no such thing as fibromyalgia" - and on and on. Finally he retired and my new doctor, a young woman acknowledged that I do have fibro - and she's good about trying to help. I only sleep for 3.5 hours a night. Few people understand how devastating that can be to one's life. My life has been interesting and work assignments challenging. What I do, I do well. I do not suffer fools. I'm a "bit" of a tough nut. I stand my ground. There are folks who do not understand my work and life ethic. Tough on them! There are folks who respect and understand me. Those are the people who are most supportive of my battle with fibro. And, it is a battle! A big hug coming your way.

January 11, 2016
A MyFibroTeam Member

Pat, it was their anniversary book and it involved my doing interviews with some of the largest donors. They hired an agency to do the design and I wound up calling to university's attention to the agency's mistakes. For example, pictures need to fall in a particular place in a large publication. The agency didn't care less where the pictures fell and in some cases, they were a page away from the associated copy. In the end, the document was better because of my suggestions. It was really painful that they didn't use me again because I have friends there who could make it happen.

I was published in a local women's magazine and the publisher later asked me to be an editor. We discussed what she wanted in detail. One of the "writers" she used regularly was horrible and I rearranged paragraphs and corrected run-on sentences. The publisher blew a gasket because she didn't want to hurt the writer's feelings.

I reminded her that she asked for an editor, not a proofreader. She decided not to use me again.

It's really tough getting regular writing assignments and if you're a day late, your reputation can be ruined.

And Tania, you are right! There's a huge stigma about FMS everywhere. I went to a neurologist after I'd had a sleep study that showed sleep patterns typical of FMS. I had asked the sleep lap to mail the full study to the neurologist, a friend of mine. I went to church with him and my husband and I had dinner in their home frequently.

When I told him I had FMS, he said, "Well, lots of people underestimate the amount of time they sleep. People with Fibromyalgia, whatever that is, grossly underestimate it." I was devastated! I left his office in tears!

At my follow-up appointment, he was planning to schedule another sleep study but by that time, he had the previous study.

He asked for my forgiveness and apologized profusely! Few people are true insomniacs but he diagnosed me as one.

Our friendship didn't last long after that because I always felt that he was judging me and thinking that I was a nut case.

January 10, 2016

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