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Does Anyone Feel As Though Internally RA Is Affecting You Rather Than Hands, Feet, Legs Etc.

A myRAteam Member asked a question 💭
Cumming, GA

They found a growth on my mitral valve that caused me to have to have open heart surgery for repair The report came back from pathology as being caused by RA. My rheumatologist, cardiologist and endocronologist had never heard of this. When I may be having a flare I can feel it inside. It has also affected my eye. My hands and feet look fine though may not feel like it but again I feel it more internally. Anyone similar??

June 5, 2021
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Answer Summary

Members strongly validated that rheumatoid arthritis can affect internal organs beyond just joints, with several sharing serious experiences... Read more

Members strongly validated that rheumatoid arthritis can affect internal organs beyond just joints, with several sharing serious experiences including heart complications, lung nodules that burst causing pneumothorax, asthma flares, and intestinal issues during disease activity. Many community members described feeling RA internally through symptoms like wheezing, fatigue, elevated inflammation markers, and intense pain that doesn't show outwardly, emphasizing the frustration that doctors often don't recognize or discuss these systemic effects. A recurring theme was the invisible nature of RA, the lack of awareness even among specialists, and the importance of advocating for medication adjustments and educating medical providers when standard joint-focused treatment doesn't address the full scope of the disease.

A myRAteam Member

Outwardly, I look fine, no deformations, lumps, etc, but my intestines let me know when the infusion is wearing thin, at the end of my shift I have stabbing pains in my feet & knees, my hands ache & bumping them causes big pain, I find my self easily short of breath just talking.....so yeah, it def is an internal thing for me

June 11, 2021
A myRAteam Member

Absolutely, I have high CRP rates SED rates when joints don’t appear swollen yet I feel lousy.

July 18, 2021
A myRAteam Member

Maybe your meds need to be changed. Sometimes I think we teach physicians but they get so stuck on what they were taught and don't think outside the box. I know I cannot do motion with my hands either but then I feel like one big sprain. New meds or new doc?

June 14, 2021
A myRAteam Member

Gratitude to all of you!
The science would agree with everything you said.
From geneticist point of view I am still amazed how many systems of the body are affected by rheumatoid arthritis let alone the crippling of mental abilities. 🥴
It is truly a gift of God that we can function as well as we do! 🙏
Kudos to everyone here, for being able to endure and yet contribute to life. 💪
Gratitude to those that have never suffered with rheumatoid arthritis or any chronic disease but yet are willing to have some understanding to those that do! 🌹

June 5, 2021
A myRAteam Member

I have been having a similar problem. Sometimes, my hands feel like there is a fire inside them that will routinely flare up and travel from my palms to the tips of my fingers. On the outside my fingers are fine, not swollen at all. It seems to happen a day after I have used my hands a lot ie. writing a lot, cutting, scrubbing the floor, etc. The pain is so intense I find it hard to sleep. Very frustrated, any suggestions?

June 14, 2021

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