Rheumatoid Arthritis Support Group
Rheumatoid arthritis is a chronic, inflammatory, multisystem, autoimmune disorder. It is a disabling and painful condition which can lead to substantial loss of mobility due to pain and joint destruction. The disease is also systemic in that it often also affects many extra-articular tissues throughout the body including the skin, blood vessels, heart, lungs, and...
Does anyone else suffer from Edema (severely swollen lower extremities) or Pitting Edema???
If so, is this related to R.A. or possibly R.A. meds??
I have had SEVER swelling of my ankles which have gone into my feet and now into my lower legs. The swelling is so bad that my skin feels like it is going to rip from the inside out and if you barely touch me, the pain is excruciating because of the pressure buildup.
I asked my Rheumy and he said it isn't related to R.A. and I should go to my GP. I went to my GP and he just gave me "water pills" and told me to lose weight, exercise, drink water and reduce sodium intake.
I have been on the water pills for a week now and haven't seen a lot of progress (have seen a very small amount).
Could this be from my R.A. meds? Why would this just happen all of a sudden? It started in my ankles at the end of June/early July and has grown since then.
If so, is this related to R.A. or possibly R.A. meds??
I have had SEVER swelling of my ankles which have gone into my feet and now into my lower legs. The swelling is so bad that my skin feels like it is going to rip from the inside out and if you barely touch me, the pain is excruciating because of the pressure buildup.
I asked my Rheumy and he said it isn't related to R.A. and I should go to my GP. I went to my GP and he just gave me "water pills" and told me to lose weight, exercise, drink water and reduce sodium intake.
I have been on the water pills for a week now and haven't seen a lot of progress (have seen a very small amount).
Could this be from my R.A. meds? Why would this just happen all of a sudden? It started in my ankles at the end of June/early July and has grown since then.
I drink almost a gallon of water a day and elevate them as much as possible. Today they're too big to wear shoes and they hurt to the touch. I had to cancel my infusion appt because my ankles wouldn't bend enough to drive. So I guess that's severe. I can't walk up stairs the last few days either. Going down hurts but its manageable. Going up with un-bending ankles is a different story.
I've been tested for everything at least twice including congestive heart failure, kidney failure and deep vein thrombosis. Nada. It's not related to meds. I've been this way on & off meds. On dmards & no bio and vice versa. No connection so far. Almost 7 mo straight & I'm really losing my mind over it to be honest. I take a daily rx NSAID too.
The swelling will go down for a day or two then my skin looks all purple & mottled and lots of broken capillaries. (The swelling usually goes down when I confine myself to my bed for a couple of days out of frustration) Even then they hurt to the touch. Not really sure what the answer is other than inflammation that's out of control. The hope was to start Remicade & try to get things controlled with the infusions. I've only had one now. Had to cancel the last two. Maybe it'll help it I can get to the appts. I'm considering asking about home infusions. This pain(from everything not just feet) is going to get me committed eventually :)
Strange that your rheumy doesn't think its related. If your hands were uncontrollably swollen wouldn't that be attributed to disease activity?
Take care & I hope you get some relief soon.
Emerald
I am in awe at your post... EVERYTHING you said sounds exactly like what I'm experiencing!!!!!
My Rheumy said not related to R.A. which really surprised me! And I know it's fluid, not infection because I have pulled at least 5-6 cc of fluid out of my feet myself!!! The pain was so bad, I had to relieve some of the pressure!
I even made a "hole" with an 18 gauge needle/syringe and my foot drained ALL night!!!! All clear fluid, no infection. Of course, the hole finally closed and the draining stopped and the swelling came back just as bad, but at least I got relief in 1 foot for 1 night! :(
I don't know where to go from here... I'm so frustrated that NO ONE can figure out what's going on and my rheumy says it's not related to RA and my GP will only give water pills and run kidney panels (which come back clear).
UGH!!!
OMG I can't believe you drained it yourself. I've wanted to but didn't have the guts. With my luck I'd get an infection anyway. I don't know what the answer is. Everyone is in awe when they look at my feet but never offer a solution other than diuretics & compression socks. Those compression socks are #1 a biatch to get off & on especially with my hands & my hurting feet (any socks that you need a donning tool to get them on/off is too much work!) And #2 they just leave deep creases in my upper calves or knees anyway. The sleeves are better but still hurt getting them on & leaves marks too. The tendon in my right thumb is shot & I have psoriasis in that nail which both hurt. Hubby helps but..anyway. SSDD. When the swelling goes down like the last day or so because its been raining here & I'm almost too achy to move they feel like the bones are broken. Not sure if I prefer the swelling & pressure about to burst feeling or the broken bone feeling. Argh! It's gotta get better right? That's about all I have to hold into on a daily basis. I also say the Serenity Prayer to keep me focused. If I can't change it (I've tried everything) then I can't let it take my energy. The pain & disease takes enough already.
@Sally, you're very dear to me too. Thanks for your friendship! A cab is out because its about 140mi round trip plus another couple of hours for the infusion. I do have it set up so that my husband is on call for my next appt & my mom lives near the Dr as well so I can crash at her house or she can pick me up if hubby takes me & has to go back to work. Hopefully they can get me in soon. They only have two exam rooms for infusions & only do them on Thursday so its slim pickings. I emailed a pic of my feet with an email to the Dr directly explaining how everything is going downhill including my hips & shoulders getting worse and her response was I need the medicine. Well duh!
I did research vasculitis and its a possibility but bells weren't really going off in my head. I don't have any rashes or visible signs anyway. It seems to match more peripheral edema since I also get the swollen eyes as well. Never did find anything about the effects of long term edema. That'll be my research for today. I'm sure its causing damage. Longterm swelling can't be good on the body.
I'm seeing my on call GP today since I woke up yesterday with not one but two styes in my right eye and they aren't getting better. They're inside my eyelid and making my face swell so it may be something else. Really hoping its not another "itis" like uveitis. So I'll see what he thinks & what the rheumy thinks this week. I can see her whenever I want, even same day, which is great. Its just waiting to reschedule the infusion. Her infusion nurse only works Thursdays which complicates things when she coordinates everything.
I need to see if Emory has a program like Johns Hopkins or Mayo. Everything in one place would be easier.
Take care and sorry you're the recipients of my 5am insomniac ramble. Been up since 10pm when the storms woke me. Sleep just makes me hurt anyway.
Emerald