Random Swelling

Thanks for being there for me this weekend. My mom was out of town and I couldnt call to cry on her shoulder. being 3000 miles away and at a wedding I didnt want to call and whine. I know Im almost 27 but you still want your mom when your sick.

Are you any better?

I'd rather have Nurse Rached than my Mom! She worries too much.

In all honesty this is the best Ive felt in a long time. The edema has gone down and so far (fingers crossed) stayed down. I was actually able to walk yesterday and not get winded. I went to target and realized I had did all my shopping and not needed to stop and sit down. Aside from the muscle being sore I feel good. but that can be from the steriod taper finally down to 9mg.

Good news!

Im sad to say that the edema is back and just as bad. If I dont take the lasix Im all swollen again. Its hurting again. But trying to function with it at work doesnt seem to be working for me. My head hurts Im constantly in the bathroom, and overall feel blah. Once the edema goes down I feel great, I can walk, run, my back doesnt hurt when I stand. Its sad. I see my dr tomorrow so hopefully we can address these issues.

Good luck, Jen.

Have you seen the dr. Jen? What does he/she say? I'm sorry it's back.

He seems to think it has to do with the steriods. I cant recall what he called steriod mylopthy or something similar to that. I took more of the lasix today and was able to get what I needed done aside from having to pee every 20 mins the day went well. I dont know if he doesnt want to deal with it or if hes just hoping it will go away after the steiods drop. Im down to 8mg of the pred and cant wait to get off and hope that all this goes away.

Good luck, Jennifer! I hope you get off the pred soon; and that the swelling goes away and stays away!

that really sucks, hope it improves soon Jen

Ok so heres the update. The swelling hasnt gotten better or any worse. My toes still look like little sasuages and sometimes go all tingly(sp). My doctor has no idea and the lasix just makes me feel very blah and doesnt do much for the swelling so I stopped taking it. My legs are killing me from this taper. I dont want to do steriods again. But I know I will have to. Maybe my rhema will have some ideas as to whats wrong.

Jennifer I haven't kept up with this thread since I asked you about the Lasix dose - sorry.

Has the circulation in your lower legs & feet been tested? Have you had an EKG?

Jen:

YOu need to see your Rheumatologist. Do it, please?

I have an appt set up some time this month I wasnt to say next week. I wrote it down and lost my post it. Shes on vacation right now, and I have her first available appt.

I'm still curious if your circulation has been checked? And your heart? Probably both are fine however I think of my very dear friend [he was the brother I never had - he lived on the other side of the States from us] who had swelling in his lower legs - he was given a diuretic. I vividly recall him emailing and telling me about his swollen lower legs and being given a diuretic, then emails that his lower legs weren't much better - then the call from a mutual friend who gave me the news my friend had walked into the gym, collapsed & died. Had his doctor been on the ball he may have discovered my friend had a heart problem.

So anyway, that's why I'm asking.

Jennifer, my ob gave me a tip when I was badly swollen from my hips to my toes during pregnancy, and it helped. It won't get you an answer, and you need a real fix, but this won't hurt to try while the docs are figuring it out. Immerse in water up to your neck, like in a bathtub, and make the water about the same temp you are. (Not hot, not cold.) Stay there for as long as it takes you to need to urinate. Remember when you were a kid, and the swimming pool always caused you to need to pee? There's some fluid balancing act that goes on, and this pulls the fluid from the tissues back into your urinary system where it can be eliminated. My ob said just go ahead and pee in the tub, but I could not bring myself to do that. I got out, did the job, and got back in several times. As the water gets too cold, you may have to let some out and warm it up to keep up the effect. Stock up a few magazines and a couple glasses of water at the tub side and tell anyone else in the house to leave you alone. It actually helped me a lot. (Only the birth got rid of the swelling altogether, but I felt much better after these soaks.) I hope your house has a tub, and not just all showers. A swimming pool would do, but I'd have rented a hotel room to get some relief by the point I tried this in my pregnancy. (Only the canvas stretchy shoes were fitting, and I was a lawyer having to wear them into the courtroom.) Good luck.
Norma

I was reading a book on autoimmunity last weekend and it suggested that to get rid of the imflamation and swelling of autoimmune diseases that getting one of the bouncy individual trampolines and using it would stimulate the lymph system to flush the extra fluid from the body. I get edema from one of my diabetes meds and it get much worse as the heat of summer starts, so I'm considering this. The least it could do is give me some additional excercise.

Bunnie, You saying that reminded me of the deep tissue back, neck and shoulder massage a couple of months ago. It was lovely but afterwards she said to drink lots and lots of water. I didn't understand why and didn't bother as i knew id never be way from the loo if i did that. Well, i got home and pee'd all night, at one time it was 10x in an hour! That got rid of a lot of fluid wonder if it would help you.
Have the docs mentioned Frusimide? That is a duretic.
Julia