Lupus and lower leg swelling
Hi, my name is John and I was diagnosed with Lupus 1 month before my 50th birthday (October 201😎. I've had just about every symptom that I've read about on these forums, but the newest one is going to be the end of me. About a year ago, my lower legs and feet have begun swelling and that swelling will cause fluid to be pushed out causing blisters that pop and turn into ulcers. Being immunocompromised, I've been hospitalized 3 times in that year for serious infections (sepsis at one point). I've been seeing a wound care doctor for it, but they seem to be focusing on the symptom and not the problem. The would care docs don't believe it is Lupus related even though I'm not diabetic and all the tests they've run indicate that my veins are fine. I've spent the past year with my lower legs in compression wraps with wounds that take forever or do not heal at all. I have an appointment with my rheumatologist next month (she's aware of the swelling) and plan on asking her about getting steroids on a regular basis. Right now, the only time I ask her for steroids is when the pain in my joints reaches the point where I cannot function because I don't like how they make me feel when I'm on them for more than a week or so...I just grin and bear it most of the time. My question to my fellow Lupus sufferers is; do any of you suffer from this particular symptom, and if so, do the steroids help?
, Thank you for sharing your experience with us. While I can't relate to this symptom you shared, I'm sure you are not alone in this experience. Lupus and swelling/inflammation go hand-in-hand ( https://lupus.net/symptoms/swelling ). It's beyond frustrating that the doctors who were treating you don't seem to believe you... I'm glad you are going to see your rheumatologist soon! Hopefully, they will be able to help you get to the bottom of it and adjust your treatment plan. Keep us in the loop with how your appointment goes! Sending gentle hugs,
Gabby (team member)I absolutely can relate, my ankles swell to impossible sizes and putting any weight on them at all feels like glass is crushing inside the joints. I'm so sorry you are dealing with this. I normally have to be put on steroids for this but sometimes that doesn't even help much. My mom is native American so I do use a lot of herbal remedies and mint, cayenne pepper, garlic, and chamomile and lemon balm seem to help with inflammation sometimes as well.
Hey
Thanks for chiming in.
I'm glad you found a few things that make a difference for you.
All my best, Doreen (Team Member)
I have total leg edema and they say I have lymphedema. I am seeing a Physical Therapy doctor that specializes in lymphedema. I am lucky to have her and under her loving care, I stopped having weeping wounds on my lower leg. She says my belly has edema as well as my entire body. Sjogrens doesn’t help me, sigh. I don’t know if the lupus is the cause but I suspect it is. I am eating organic foods. I try to reduce inflammation by keeping a positive attitude… I am told it is as important as avoiding sun exposure. Good luck with your care plans and caregivers. I won’t work with anyone that won’t treat me as a partner.
We appreciate you sharing your experience as well as your wonderful perspective.
Juggling multiple conditions can certainly be challenging. It seems like so many of them are intertwined. ~Doreen (Team Member)
I ordered some compression socks.
, I personally love my compression socks! Thanks for sharing this tip wth John ( )!
Best, Erin, Team Member.
they can help to keep the swelling down. I just can’t keep them on for too long ~ Racquel~ Team Member
