MCTD Support Group
Mixed connective tissue disease (MCTD) or Sharp's syndrome is a human autoimmune disease in which the immune system attacks the body. MCTD combines features of polymyositis, systemic lupus erythematosus, and systemic scleroderma and is thus considered an overlap syndrome. MCTD commonly causes joint pain/swelling, Raynaud phenomenon, muscle inflammation, and scarring of...
Hallo,
For quite a few weeks I have been suffering from fluctuating pain in and around the balls of my feet. Sometimes I can hardly walk, other times it improves as I am walking but it never goes away completely. If I stand still it gets worse and when I move away the pain continues there again. The ball of both feet appears swollen and if I press with my finger on the underside it gives me pain as in certain places. My dry weight on dialysis is very reasonable and I cant take too much more fluid off without cramping. My feet and ankles appear as though there is some water-retention but I dont know how far I can go to take more water off. I have consulted the medics and am waiting for the result of x-rays of both feet. I dont know whether this is a feature of dialysis, so I would like to know of anyone on dialysis has experienced this.
I have changed to different shoes six times but it doesnt make any difference, nor does resting my legs/feet horizontally help. It has been muted that it might be arthritis or some inflammation of a nerve or tendon, and I am wondering whether the water-retention either causes it or makes it worse? I have also wondered whether it is a Lupus/MCTD-flare-up? It is a great problem for me as it causes me great mobility-problems and I dont really need this now.
Thank you from Kristina.
For quite a few weeks I have been suffering from fluctuating pain in and around the balls of my feet. Sometimes I can hardly walk, other times it improves as I am walking but it never goes away completely. If I stand still it gets worse and when I move away the pain continues there again. The ball of both feet appears swollen and if I press with my finger on the underside it gives me pain as in certain places. My dry weight on dialysis is very reasonable and I cant take too much more fluid off without cramping. My feet and ankles appear as though there is some water-retention but I dont know how far I can go to take more water off. I have consulted the medics and am waiting for the result of x-rays of both feet. I dont know whether this is a feature of dialysis, so I would like to know of anyone on dialysis has experienced this.
I have changed to different shoes six times but it doesnt make any difference, nor does resting my legs/feet horizontally help. It has been muted that it might be arthritis or some inflammation of a nerve or tendon, and I am wondering whether the water-retention either causes it or makes it worse? I have also wondered whether it is a Lupus/MCTD-flare-up? It is a great problem for me as it causes me great mobility-problems and I dont really need this now.
Thank you from Kristina.
You may never get an explanation for the pain. What you need to do is see a pain management doctor. Pain management is the only reason I am alive today. Otherwise I would have wasted away in bed a couple of years ago.
Using the chair was terribly embarrassing to me for a long time but i got over it. I got my chairs off craigslist. I got both for 100 buck each. but i had to buy batteries for them. both chairs were over 3k bucks new and have many many miles left on them.
the reason i have two is after i got the first one, a Jazzy I saw another on craigslist that was motorized but also able to collapse like a manual chair and can be put into the truck or back seat of a car. Uses the same batteries as the Jazzy. The batteries come out of a rack, and the rack lifts out of the back of the chair and then the chair folds up. very convenient.
I was able to afford them because I still worked at the time. It was a few years before I even knew how sick I was. I like to go to car shows and tractor/thresher/flywheeler shows and noticed i could no longer walk the distance so I bought them for those kinds of trips and trips to the Disny World. I live close and used to go a lot.
Mary Ann
For me, this is one of those symptoms that comes and goes-- but when I have it, it's kind of worrying, like, "Crap, I hope this doesn't get worse." So far, so good....
I remember other trips to New York have been bad for this, too. I even have a cane that I leave at my friend's house here, but I haven't needed it the last two or three trips. I go three times a year, and maybe once out of every two years, I definitely need that cane for longer walks.