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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 💭
Fanwood, NJ

We have swim therapy and a dentist appointment today. However, we realized during swim therapy that as our PT told us to try walking backwards it made our littles come out because it scared the ever loving 💩 outta us. As we started to cry and panic that there might be someone behind us or that the floor in the pool might give out, or our feet was disappearing due to it missing when we couldn't see it, our PT had to explain to us that next time it's ok to tell her no and express our feelings… read more

June 15, 2024
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Answer Summary

Members rallied around someone navigating the challenge of advocating for themselves during medical appointments while managing trauma,... Read more

Members rallied around someone navigating the challenge of advocating for themselves during medical appointments while managing trauma, dissociation, and sensory sensitivities. Several members shared their own strategies for speaking up, including communicating specific conditions like fibromyalgia to providers, requesting higher sedation or local anesthetics when needed, and being honest about anxiety even when it means declining certain procedures until ready. A recurring theme was the hard-won realization that self-advocacy is essential because no one else truly knows how you feel, with many emphasizing the importance of finding compassionate providers who listen and work collaboratively as a team.

A MyFibroTeam Member

I usually point out I have fibromyalgia. I then ask if they have had someone with this before and ask them how it went. I then discuss a plan for minimizing pain from what is being done. This often results in higher rates of sedation or local anesthetics

June 15, 2024
A MyFibroTeam Member

@A MyFibroTeam Member I'm glad you found one that is gentle. I am thin and I was screaming and crying when the mammogram was being done. I was sure she was going to break a bone. So I had to advocate for myself and My PCP agreed with me and she writes a referral for a breast MRI. Breast MRIs are no fun but I prefer it over a mammogram in my case. I also like going into get the ultrasounds at a place called OC breast Wellness because they actually really look at the breast. I'm older now and no one examines my breast physically except OC breast Wellness. @A MyFibroTeam Member

June 17, 2024
A MyFibroTeam Member

I have dense breasts also but i get one every year. Some techs are really hurtful but there is one that is really gentle.

June 17, 2024
A MyFibroTeam Member

I have always advocated for myself, there’s no one else who knows how I feel! I’m fortunate that I have a doctor who listens to me, we really are a team.

June 15, 2024
A MyFibroTeam Member

I have learned the hard way (by hospitals and doctors not listening to me) that I HAVE to advocate for myself...no one else, but my husband, will.

June 15, 2024

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