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Real members of MyFibroTeam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.
A MyFibroTeam Member asked a question 💭
Edinburgh, UK

I feel like my fybro has gotten worse over the last 3 years. I'm worried I'll end up in a wheelchair by the time I'm 40.
My partner quit his job to look after me and my daughter. This was supposed to be short term. I really don't see him or me getting back to work. My mobility is only getting worse and my fybromyalgia symptoms just seem to be getting worse and more severe. I'm definitely in more pain than I was 3 years ago.

April 24, 2018
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Answer Summary

Members shared their fears and experiences about fibromyalgia worsening over time, with many describing a clear progression in pain, fatigue,... Read more

Members shared their fears and experiences about fibromyalgia worsening over time, with many describing a clear progression in pain, fatigue, and mobility challenges that has forced them to rely on walking aids, wheelchairs, or full-time caregivers. Several members offered practical coping strategies, including using mobility aids without shame, pacing activities carefully, managing stress through therapy or relaxation, seeking complete medical evaluations to rule out other conditions, and focusing on what they can still do rather than what they've lost. A recurring theme was the tension between medical opinions that fibromyalgia isn't progressive and the lived reality of members who feel significantly worse as they age, coupled with fierce encouragement to adapt with grace, seek support, and hold onto hope one day at a time.

A MyFibroTeam Member

I have noticed a progression regarding my pain and fatigue. This past year has been my breaking point where it is too hard to hide this from others and pretend/fake being well. I just can't do it anymore. I have been spending most of my days on the couch or in bed. I am trying to remember that I have to pace myself and not be so tough on myself when I can't do things the way that I used to. I hope that everyone is still able to enjoy and appreciate things in their lives, even if what that is has had to change😊.

April 24, 2018
A MyFibroTeam Member

It’s so hard having to miss out on those moments, whether it’s a daily walk or bigger ones. My advice would be to try super hard to focus on the things you can do with your daughter, whether it’s a quiet snuggle or sharing a book. When people like us focus on the “can’t” it just adds to the overflowing pile. ❤️

April 24, 2018
A MyFibroTeam Member

@A MyFibroTeam Member
Have you thought about or looked into getting a Walker. You don't have to use it everyday but just have it in the house to use on your bad days. It will also give you somewhere to sit if you are out and can't find a seat.

April 26, 2018
A MyFibroTeam Member

Yes I know mine has gotten worse with each year as I've aged. I'm 55 now and my 76 yr old mother gets around better than I do.

April 25, 2018
A MyFibroTeam Member

I truly understand it’s rubbish and you feel like a fraud. People just don’t understand how we feel thank god for this site xxx

April 24, 2018

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