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Real members of MySpondylitisTeam 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 MySpondylitisTeam Member asked a question 💭
Ocala, FL

I was under the impression this site was to discuss various Spondolytis issues and solutions; however, a lot of the site is like Facebook, talking about arts & crafts, family vacations, etc. I’m not here to shoot the breeze about everything under the sun. I’m in serious pain, with serious issues that rob my sleep, my daylight, my eating ability, balance, eyesight, and even my brain. I appreciate people who discuss the medical issues and offer whatever solutions they have found.

June 18, 2019
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Answer Summary

Members gently responded to someone questioning why the community discusses everyday life topics like hobbies and vacations instead of... Read more

Members gently responded to someone questioning why the community discusses everyday life topics like hobbies and vacations instead of focusing solely on spondylitis pain, explaining that talking about the good moments between flares helps them maintain hope, feel normal, and avoid letting chronic pain consume their entire existence. Several members emphasized that the site serves as both a medical resource and a vital social lifeline, especially for those who are isolated by their condition, and that choosing which conversations to engage with is entirely up to each individual. A recurring theme was the importance of balance, with the original poster later apologizing for their frustration during a severe pain flare and the community responding with understanding, shared stories of resilience, and encouragement to stay connected.

A MySpondylitisTeam Member

You are not alone with your pain and we all understand that you need relief from the misery of this condition. You will find plenty of good information about spondylitis treatment, relief and medications so please keep reading the articles from people who have tried practically everything. But remember in between the pain we try to be normal and do the little things that mean so much to us, like grand kids, hobbies and vacations. We can escape with someone enjoying a few moments of their day having some time-out from this debilitating condition.
If all I think about 24/7 is my condition, my day is going to be a long, painful and hard time. I like to read that someone got a good day - it gives me hope that I may get some of the same!

June 18, 2019
A MySpondylitisTeam Member

I am sorry that this site is not what you expected.but it does have a nice human aspect to it.the people on this side SHARE a lot.maybe it's the physical,mental,spiratual, aspect of it all.but THESES DEAR people show a different light in some way.STAY a LITTLE while longer and if it's not for you, I am sure that there is a sight for you.you sound like you could use a little human compassion.and the people on this sight DO exactly t;hat.GOD bless you, I hope you fine what your looking for.

June 19, 2019
A MySpondylitisTeam Member

Well, perhaps if you have no understanding of someone needing to stray from there daily pain and maybe bring up there knitting project or vacation, then this site is not suitable for you. Try a little understanding and this site may end up helping you cope. Have a blessed day.

June 18, 2019
A MySpondylitisTeam Member

No need to apologise we all have bad days Deborah. We rant rave and moan when we are down and are positive (sometimes) on the good days. I hope you are well. Take care

June 25, 2019
A MySpondylitisTeam Member

Ask your questions. Many people enjoy conversing with others as it helps them get a view of other people's lives that live with A.S.
You will be surprised how many people may have ideas or answers to questions that you may ask.

June 19, 2019

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