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A myRAteam Member asked a question 💭
Marion, OH

Does anybody else have severe leg edema? Is this part of the disease? My Rheumy wasn't even able to feel my knee joints because of the swelling, just started a few mos ago. I'm on a diuretic but haven't seen any change yet...

March 4, 2016
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Answer Summary

Members shared experiences with severe leg edema related to rheumatoid arthritis, with many expressing frustration over being caught between... Read more

Members shared experiences with severe leg edema related to rheumatoid arthritis, with many expressing frustration over being caught between specialists who defer to each other and the challenge of identifying whether swelling stems from RA itself, medication side effects, or other conditions like cellulitis or thyroid issues. Several members offered practical advice, including checking medication side effects for edema warnings, seeking evaluation from a primary care doctor to rule out heart or circulation problems, trying manual lymphatic drainage therapy, and advocating assertively for more aggressive treatment when prolonged swelling threatens joint damage. A recurring theme was the emotional toll of navigating complex symptoms with limited answers, the importance of self-advocacy when doctors seem uncertain, and the shared determination to keep pushing for relief despite the challenges.

A myRAteam Member

Is your edema pitting? When you push in with a finger and lift up, does an indent remain? Is it there when you awaken, throughout the day, or only later in the day or night? Is it in both legs; feet and ankles? Can you find pulses on your feet? You should consider that there may be something else going on besides the RA. I would make an appointment with my PCP to address this specifically. Are you diabetic? Any numbness in your extremities? Lots to look at there. Please call your doctor Monday.

March 5, 2016
A myRAteam Member

Thank you Jlfown!!! I will keep you all posted. Sorry you to are dealing with the swelling it can sure be a pain to deal with. Prayers for you as well!!!

March 9, 2016
A myRAteam Member

Yikes! So sorry you are dealing with this, I get terrible swelling also but mostly just in my hands and wrist area...praying you find a solution!!! (((Hugs))) @A myRAteam Member

March 8, 2016
A myRAteam Member

I have had edema on my left leg for almost a year. No pitting so not heart related. I also have Hashimoto's but no one can tell me why the edema. it is worse some days and other it is tolerable. I see an RA specialist an Endocrinologist on regular basis. I have had dopplar and I am told pulse is good. I can't wear compression hose because the swelling gets so bad between foot and ankle that is causes the hose to get to tight at that point. I even had gone to see a vein doctor who told me all I could do was wear the hose. I also was on diuretic but didn't help. I sure hope you can get some relief because I have not. I am going to see a surgeon today about my knee if he tells me something different I will be glad to share with you.

March 7, 2016
A myRAteam Member

Swelling is part of the disease. But severe swelling that goes on for months I'm not so sure about.
I self diagnosed my RA because my hands looked swollen like my Grandmothers.
My grandmother's foot would get so swollen she couldn't wear a shoe.
But that was the early 70's and thank God things have progressed.
If I were you I would ask why the diuretic and if you shouldn't go on a more aggressive treatment plan.
Where there is that much swelling there's going to be joint damage. Hugs to you.
Be assertive with your treatment.

March 5, 2016

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