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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.
April 30, 2016
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Answer Summary

Members opened up about the loneliness and hurt that comes when the one person they rely on for support gets frustrated with their... Read more

Members opened up about the loneliness and hurt that comes when the one person they rely on for support gets frustrated with their fibromyalgia, sharing that partners and loved ones often struggle to truly understand the invisible pain, exhaustion, and limitations that come with the condition. Several members offered compassionate advice, including giving each other grace and space to process frustration, recognizing that loved ones may be mourning the person you used to be, communicating openly about the unpredictable nature of fibro, and finding practical coping strategies like cooking in bulk on good days, using electric blankets for pain relief, and connecting with others who truly understand the disease. A recurring theme was the emotional toll of feeling like a burden or a fraud, balanced by gentle reminders from the community that fibromyalgia is real, that no one can fake such complex symptoms, and that self-compassion and peer support are essential tools for navigating both the physical and relational challenges of chronic illness.

A MyFibroTeam Member

It took me a long time to understand that NO-ONE understands what you go through with Fibromyalgia.It is hurtful and frustrating.The only thing that helped me was to understand Fibro..all of it read everything.Then I learned all the tricks of helping with Fibro..to make my life easier..like I cook dinner in the morning or afternoon way too tired at night.I have my electric blanket on my couch..and keep it on..when I feel pain rising I get under it..I have all Fibro friends so we can call each other..and they understand..and if we can not make a appt.we understand..I will cook big on one day ( when I have energy) then put it in freezer bags for the days I have no energy..there are a lot of tricks..I cook meatballs on a cookie sheet ( instead of standing there turning them over)..have a room or space you can go to to be alone..we need our space at times to be alone..to have peace and no stress...hope you can learn a lot of tricks from many who have had Fibro a long time it is helpful..you have to concentrate on you..and helping you..we are here for you anytime...gentle hugs your way..♥

May 1, 2016
A MyFibroTeam Member

Sounds like he was trying to make you feel bad because he was feeling bad. Don't let him make you feel like you aren't good enough just because you can't work. I'm sure you do as much as you can around the house. It really is difficult for someone who hasn't walked in our shoes to understand how difficult it is most days. I wouldn't know how to fake all these weird symptoms since I've never even heard of anyone else having them before me. All we can do is accept ourselves as we are and if others don't that is their problem not ours. It is hard enough getting through the days with our own self doubts without taking on everyone elses. One day of doing more than you should and you will know why you don't do that. Our bodies tell us when to stop. We just have to listen. Take care of yourself. You are not alone on your journey.

May 1, 2016
A MyFibroTeam Member

Claudia, you are so right that no one can understand and for us to think someone other than a fibro sufferer can is unrealistic. We need each other and I think it's great that you have people that you can talk to. I would love to have a couple people that lived close to talk to like that. When I have any energy I try to get stuff done but I never cooked. Thanks for the tips on that too. I have my electric blanket too.

May 1, 2016
A MyFibroTeam Member

You give them time to get over it. They may have had a bad day too. When calmed down talk to them about how you need them to be understanding but that you will try to understand that sometimes they also need a little understanding. It's a two way street. You have to give as well as get.

April 30, 2016
A MyFibroTeam Member

Claudia
I've had fibro since the early 90's. Seems like over the years my pain, brain fog, etc.... is worse. I still work full time because it's necessary for my family to survive. I feel like I'm a failure to my children especially my youngest who is 15. When I get home from work I am exhausted but I push myself to get things done at home. Then do it all over again all week. On the weekend most of the time I don't care about doing anything or going anywhere. Trying to rest up for the work week ahead. So the cycle goes. My husband is not supportive he tells me if you get up and move around you will feel better. My oldest daughter, 24, is the one I depend on the most. But again I feel guilty for doing that. It's like I'm on this hamster wheel and can't get off.

May 1, 2016

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