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A MyFibroTeam Member asked a question 💭
Sheboygan, WI

I have pain all the time. If I do a little around the house my pain increases. If I shop it can take a couple of days to recoup a little. Yet my family thinks I could do more. Any suggestions on how to get them to stop pushing are guilt tripping me

December 2, 2020
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Answer Summary

Members connected over the challenge of getting family to understand chronic fibromyalgia pain, sharing stories of being accused of laziness... Read more

Members connected over the challenge of getting family to understand chronic fibromyalgia pain, sharing stories of being accused of laziness or exaggerating symptoms before loved ones finally educated themselves or witnessed the reality firsthand. Several members recommended the Spoon Theory article as a helpful way to communicate energy limitations to family, emphasized the importance of pacing and celebrating small accomplishments like doing dishes even if it takes half a day, and validated that only those living with constant pain truly understand how debilitating even minor tasks can be. A recurring theme was the emotional toll of guilt trips and hurtful comments from family, but also hope that over time and with patient education, understanding and support can grow.

A MyFibroTeam Member

Sorry family support is helpful. I think my husband finally understands more. He did some research online himself. Before I was diagnosed he called me a lazy bitch which was very hurtful. My family is becoming more understanding. I told my sister that I think she has fibro. My niece in law has fibro she had it way before I did and she is much younger. When she had her baby she almost died. I can't remember what it was called she was in ICU for quite a while. That's what caused her fibro. A lot of the family thought she was just lazy. I know now what she is and was going through. When I got my diagnosis I called her to talk about fibro. She told me not to let anyone tell me any different that my condition is what it is. To pace myself and rest as much as I can. She understands what it is like she has been dealing with it for 13 years. Do the best you can. Gentle hugs and love to you

December 6, 2020
A MyFibroTeam Member

Having the trifecta of nerve, muscle and joint pain Is the worst. I have all 3 + as well.
I am blessed in my family being understanding in their actions if not a full understanding of the depths of my conditions.
Be as active as you can remembering moderation is a necessity sometimes. If it takes half the day to do dishes focus on the fact that you Did them.
Wishing you well.

December 2, 2020
A MyFibroTeam Member

Most people do not understand that our pain is 24/7. A "good" day may be a pain level of 4. A bad day can be up to an 8. A I pray I never reach, I must be in hell level is a 9-10.
One of my doctors stated that for chronic pain even a .5 drop in pain can feel like a huge improvement.
Some people may never understand. Some just wont try to understand.
This helped me communicate how I felt to my husband. While he has way more spoons than me he will let me know where he is too.

https://www.practicalpainmanagement.com/patient...

December 2, 2020
A MyFibroTeam Member

I wrote this two years ago.
It is a good marker on how far I have come. I am taking one day at a time and doing better.

My arch enemy is pain.
It dominates my very essence,
Each day we fight each other for control. I research my maladies, I try treatment options, I try a multitude of medications, I cry, I rant, I evaporate.
I have yielded to your power because you have taken up residence in my conciousness. I have grown afraid of you because of your random attacks. Ever so subtly I surrendered with despair.
My faith in a greater universal power is out of focus. Faded and distant. I whimpered weakly, “God, I am here, help me.” Nothing seemed to change. Because I have given away MY power. It is not that I was angry with God ,that would require energy. I was indifferent
and adrift. Beaten.

December 2, 2020
A MyFibroTeam Member

I've had fibormyalga for a least 10 years. I can do next to nothing of my house work. Also have a bulging disk in my back. And my family still. Thinks I could do more.

December 5, 2020

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