In less than a year both of my hands have completely changed:( both pointer fingers and thumbs are in "swan neck" direction and the other fingers are skinny with bulging joints. I have very waxy skin around my nail bed which is always red and puffy. I've always been a very confident girl but have now become very self conscious of my hands :/ ... my mother has RA so her hands have some similarities to mine but she said it took many years for her deformities to occur... id love to know if anyone else suffered from rapid osteoarthritic changes ?? I dont know how lupus is considered an "invisible "disease when you're appendages permanently change directions! Not to mention having to use a walker/wheelchair to get around and I can't forget the the tubes up my nose for oxygen, im certainly not doing it for fashion! Thankfully my feet didn't get effected and they're still cute enough to wear sandals lol :)
Hi, Dawn, I'm right there with you...invisible??? Who came up with that description of lupus....someone who didn't have it, probably. I know what you mean about your hands. If I put my index fingers side by side, one points to the right, the other to the left....if anyone ever asked which way did the bad guy go, they would be really confused if I used index fingers to point :) Also, my little fingers on both hands have swollen and at random decide they will not have contact with the rest of the hand. So, that's just what the painful and swollen little digits do. I apparently have no say so in anything that happens in and to my body. And yes, my feet, SO FAR, are still able to shine with sandals. I guess the best we can do is be thankful for the good days, or the not so bad days, or the not so bad hours, and just keep on. Keep your sense of humor.....it's the one thing Lupus can't take from us:)
Good afternoon Dawn,
My hands are okay, I have some crunchy joints in my thumbs but the thing that took me to the rheumy to be diagnosed was the change in my toes. They started pointing in other directions and my big toes look like they've been broken (they haven't). So, no heels for me....which is okay, since I never learned how to walk in them anyway. Unfortunately, every step hurts in some way which is hard to explain to people. The changes in my joints started about six months prior to my diagnosis with lupus, and I was diagnosed about a year ago. It seems like with lupus the changes should be more visible, but not too many people see my feet.
Sending positive thoughts your way!
Diane
I was diagnosed with RA with my Lupus. It only showed barely positive for RA once though. All other tests negative. But you can see it in the joints. Have you been tested consistently for RA? I was told Lupus doesn’t deform the joints. They swell and get sore but not deformed. RA deforms them. Not sure if that’s a fact though. If you haven’t been checked for RA then you may want them to. There are some different meds for that to help stop the deformity. Take care!
Tinapet - I was also told Lupus does not deform the joints. But…my thumbs are severely disformed and my fingers turn out. I have a new, young Rheumatologist that asked " how long have you had Jacoud's?" Ja what? I'd never heard of it.
Jaccoud’s arthropathy (JA) is a chronic, deforming, non-erosive arthropathy occurring in a subset of patients with systemic lupus erythematosus (SLE)
That is something that I have never heard of…on to research! Thank you!
Im pretty sure I’ve been test for RA more than once since June 2012 . My rheumatologist is very aware of my mother’s RA and MS …when I went to Hopkins they retested me for everything ! The labs showed all my usual positives and abnormalities except I was seriously Vitimin D deficient…that helped explain the bone contusion in my knee. I definitely have osteoarthritis in several large and small joints including my SI joint, my pubic bone always hurts from it. I now have subchondral sclerosis as a “side effect” of OA, it excruciating:/ inflammatory arthritis is present in my left ankel and both hands will lots of swelling, throbbing and redness. I have definitely researched “Jaccoud’s Arthoropathy” a while ago when my pointer finger began to turn in and curve. It is very unique to SLE and is only seen in a few other autoimmune diseases. My mother’s RA hands look very different than mine. Her joints look very big ,nobby and her fingers don’t curve at all. My hand joints are big mostly because all the meat between my fingers are gone, they’re sooo skiny! I have bome marrow edema in my right pointer finger knuckle so it’s always really large and reddish purple . The rest of the fingers have OA and inflammatory arthritis. And I do have the “swan neck” curve on both pointer fingers and thumbs…I’ve definitely learned a lot about the wonderful world of arthritis and still can’t believe how many different types there are! Ever arthritis condition has a distinct appearance, progression and association with diseases. Over the past 2 years I’ve tryed several different medications and supplements in order to save my joints but unfortunately nothing is slowing my diseases process down… at this point im having more problems with bone and loss of cartilage than joint issues. Im still taking 50,000 units a week of vitamin D …I want to believe it’s helping but my shoulder did partially dislocate and separate just turning over in bed:/ besides medicine I do believe it’s important to try to eat a healthy, balanced diet to help control the inflammation and overall disease process. When you eat good you at least feel better:)
I love the term "invisible illness" The person who coined that one and the other " you don't look sick" has obviously never been sick. My lupus is anything but invisible,,,,,,,,, my cheeks and nose are badly scarred from the discoid portion of my lupus as are my arms. My joints are swollen along with my ankles, and wearing oxygen is not a fashion statement. People stare sometimes, I've been mistaken for being a lot older than I really am, most recently I got the senior discount at the movies without being asked! I'm only 53. Adding insult to injury my feet are swollen and discolored from the chronic swelling and years of poor circulation so I never get to wear sandals or shorts anymore. : (
Hi dawncelest,I started having issues with my hands in high school 32yrs ago,I’m 51 now and just spent 5 months,5 casts,I have two fingers on my right hand that work pretty well,my thumb and my pointer finger,that’s it…my left is the one that spent all this time in a cast,now I have a custom made brace on that hand for the rest of my life,the bone actually died in my left wrist.lack of blood flow to the bone made it die off…so weird.usually they take bones from your hips to do this surgery but I’m so thin from the meds I take he wouldn’t do it,with that being said my wrist was replaced with plastic and a plate put over that to hold it all together,I will never be able to bend it or pick up heavy objects and it makes life very challenging…if I were to fall on it or do any more damage to it he would not be able to do anything for me…try to baby your hands as much as you can.I did not do that…I did jobs that made my hands worse,I was a single mom with no child support…I pulled planter chain in a lumber mill,I loaded freight trailers,I filed band saws at a mill,I was a bartender for 10 yrs and worked for a Xmas wreath company,all hard on the hands…I too have a beautiful oxygen hose,the lupus started on my heart and lungs in my early 20s…Ask your Dr about voltaren gel, this stuff works good,rub it into your hands and the relief is pretty amazing,Try it and let me know if it helps at all…take care celeste