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Advice on swollen feet and leg pain.
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delinda007 posted:
Hello,

My Mom has been sick for about a month. Her feet are swollen, and she has constant pain in both legs. When she tries to walk she says the soles of her feet burn, and recently she has admitted that it burns when she urinates. She has had multiple blood tests, and an ultrasound of her legs to rule out blood clots. So far the doctors have determined it's something autoimmune, but have not determined what. She is on 200 mg of Plaquenil and 40 mg of Prednisone. All she can do all day is sit in an arm chair and watch TV. The only time she walks is when she struggles to get to the bathroom, and she is usually close to tears from the pain when she does. It's hard to see my mom like this.

She has had two previous incidents (probably flares) but they never lasted more than a week with prednisone as treatment. And the Dr.'s were not able to put a name on it then either.

I was diagnosed with mixed connective tissue disease 5 years ago. I take 40 mg of Plaquenil a day and have been blessed to live relatively symptom free.

So I was wondering if anyone had experienced similar symptoms, and how you managed them. Does anyone have any advice on how to bring down the swelling? I am a strong believer in natural cures and home remedies. I am willing to try anything that might bring her some relief. She has a doctors appointment next week, and right now, i do not know how we are going to get her to the car. I don't think she can make it walking.

Thanks for your time. Delinda
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HG1948 responded:
Hello Delinda,

Your mom's swollen legs, painful burning sensations in her feet, and her pain upon urination, are not common symptoms of lupus. Nevertheless, lupus can damage any organ system in the body.

I've had swollen feet and legs three times since 2006. My doctor's orded echocardiograms to rule out congestive heart failure, which runs in my family. My high blood pressure was already being monitored, but 80mg of lasix was started every day after I'd been on prednisone for several years. Prednisone can cause fluid retention. Segmental pressures of my legs was done, along with an abdominal ultrasound of my kidney's, and a sonogram of my legs. A kidney specialist, is monitoring me for lupus nephritis. It was determined that the burning sensations in my feet and pain in legs was caused by spinal stenosis and peripherial neuropathy. No one knows if all of these problems are a result of my lupus. At present the jury is still out.

I wrote all of this out for you to explain, in the only way that I could think of to tell you that I have a same symptoms your mother, except pain upon urination. Even if all of my different symptoms were caused by lupus, I would have still been examined and treated this past year by seven different medical specialist, a neurologist, a neurosuregon, a kidney specialist, a cardiologist, and a cardio-vascular suregon, and a back orthopedic suregon. (My PCP and rheumatologist call in different medical specialist as needed. I serve in the role as "Medical Case Manager".)

I had to eventually assume the role of medical case manager for both of my elderly parents. How would it work, if you asked your mother to allow you to accompany her to her next doctor's appointment, and you begin using that opportunity, to "get the ball rolling" toward a multi-disciplinary approach to
her medical care.

I also also a fan of natural remedies. However, your mother's symptoms need professional assessment at this time.

Good luck to you and your mom. She's so very luck to have you.

HG
 
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allie_bf responded:
I agree with HG1948, but my other concern, as I read your post, is that your mom is doing next to nothing all day long. Even during a flare, this is not normal, nor is it helpful (although it is very understandable.) It sounds like your mom may be dealing with some pretty significant depression, as well as her physical symptoms.

Talk with her about this, and encourage her to follow up with her doctor. Tell her doctor about this yourself, if you think it's unlikely that she will. There are natural approaches for depression (useful if the symptoms are not immediately life threatening,) and there are also "talk therapies" that are beneficial. This is certainly a sensive area to discuss (especially with a parent or other family member,) but the help you can offer her can certainly offset the temporary discomfort of raising this subject.
 
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marilynk2 responded:
Delinda,

I have had all the same symptoms and been treated by multiple doctors for them. Burning urination can mean different types of urinary or bladder problems. Burning feet can be nerve problems. Swelling can be from the prednisone or other reasons. The painful legs can be neurological. As the others have said, a complete work-up is needed and a partner, like yourself, would be a great idea at a doctor's visit. i would give anything in the world to have someone accompany me to help me get all my questions asked as well as process all that is said to me.

All that has been said is vital and I wish you both the best!

Hugs,
marilyn
 
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squirmy1963 replied to marilynk2's response:
My first impression was a pinched nerve probably a disk problem in back. I would rule this out first. Talk to the doc.
 
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delinda007 responded:
Thank you all for your advice. I really appreciate it. My Mom was admitted to the hospital yesterday, they say she has the markers for Lupus. They are running lots of test, and have her on pain meds. I'm glad she finally getting the help she needs.

Thaks again,
Delinda
 
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HG1948 replied to delinda007's response:
Delinda,

What a great time to get her on the right road for accessing the appropriate medical care as needed for her multipal issues.

HG
 
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jessi19661 replied to delinda007's response:
I am so happy to hear that she is in the hospital where they can take care of her pain and other issues!! I havn't been around for a couple days and was kind of following this post. I also have severe pain in my feet and ankles/legs almost everyday for a long time. I dont really know the cause, it could be my uctd or neuropathy, or vasculitis or FLUID IMBALANCE that accompanies pred treatment. I have also had/have many infections this year which always coincide with severe unrelenting ankle pain. I actually just spent the night in the hospital myself, but due to severe abdominal pain from some type of infection. I dont think the doc really knew exactly what the cause was but they gave me IV dilauded twice and toradol, and IV antibiotics and POTASSIUM. Mine was a bit low. I think it was unrelated though, from constant diarrhea, and fluid depletion, but for every day since Tues my pain was all gone.....now its back. I mean to say the ankle pain, the abdominal pain is gone. They gave me zithromax also, 4 of them, and I am still on doxycycline.
I hope to goodness they can help ur moms pain somehow! I wrote all this just in case it may ring a bell with you and help somehow. Please let us know how she is when you can. hugs!
 
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Lupylisa44 replied to delinda007's response:
Hopefully they will figure out what is going on with your mom at the hospital! I will keep both of you in my prayers! Please keep us posted on what's going on. We will try to help in any way that we can!
Lupylisa
 
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delinda007 responded:
Hi Everyone,

My mom spent two weeks in the hospital, and is now at a rehab facility. Not sure for how long. She has suffered nerve damage from the lupus. She can not feel her feet, so she can't walk; and has numbness and limited use of both hands. She can still feel pain shooting through her feet and legs. It is always worse when she is moved from the bed. While in the hospital, they did a nerve biopsy. They said it would help determine the course of treatment. She also has a lot of swelling in her legs and arms. She says he legs feel so heavy that she can't pick them up.

With the exception of the pain, she is much better. She is stronger and stable and more like herself. The hospital took excellent care of her. I am hoping the rehab facility will also.

Thank you all for your support and prayers. It makes it a little less scarry knowing others have had similar experiences.

Delinda


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