Wondered if anyone else experiences this (new here and asking because I am curious to know if it is SJS or something else)
When I wake each day, and get out of bed, my feet feel kind of bunched up and they are uncomfortable, rather than painful, to walk on. This eases off after a couple of minutes. Same thing applies after I have driven to work.
I am fine walking, but if I am still for 45 mins or longer, then the feet are wrong. SJS or something else I am gifted with?
My right foot in particular will cramp up on me during the day. I don't think I've noticed this when getting out of bed.
Terri
Hi everyone, i suffer with raynauds dyndrome which is common with sjogrens, i get it so bad sometimes i cant feel my feet at all, they can be icy cold with very strange sensations, chill blains, itchy, painful and extremley sensitive and other times just totally numb. It travels up both legs, i also get a dark red/purple vascular rash which looks just like the menengitis rash (its not) this rash was all over my feet and ankles and travels up both legs into my groin. Im taking cozaar/lozartan which has eased it a little. I used to get the rash with my monthly cycle too, but that seems to have calmed down now, although that time of the month is alway thet for me, dry eyes fatigue, tinitus, photosensitivity and somtimes nerve pain. Im also taking azathioprine, for approx 1 year is anyone else taking azathioprine? i find it helps my eyes and photosensitivity, muscle weakness etc but my bones seem to ache.
Hi Jaygee, I too get painful feet/legs. When this mess started, I noticed that if I was cold, or under any stress - my muscles (and now joints) would get very stiff that eased with continued use. I've been diagnosed with Reynaud's and Fibro among other things. So which causes what, don't know, just wish it would stop, it gets old sometimes.
Hi Macyj, let me also welcome you to the SJS World! Please look around as there are tons of topics that might be of interest to you, and as you've already seen, gaggles of really great members too! I know what you mean about about your feet being so cold that they become numb and blue/white (along with my hands, and now my nose too). Ugh, I'm getting to hate being in air conditioned offices/homes - it's awful (but the heat brings out other problems).
I don't get the rash, but I get the Livedo Reticulitis patterns (if nothing else, they are interesting to look at! ;) :D).
Take care -
Patze
I get this too. I was wondering about it. I've noticed it started around the same time that my big toes went numb a few months ago.
jaygee-Never had feet probs b-4 but the end of May I was tapered off predisone that I had been on and off for yrs for sinus probs. Well first acheys came then downright arthritis and had to start edolodac 2x day and tylenol every 4 hrs and it seemed at night(midway through) my feet were awful like yours and in the a.m. and after long days at work. After about two months of this( it was grueling ) it finally disappated, things seem to just be sparatic now. I felt like I literally was gonna tear my tendons open on the bottom of my foot at times. My Rheumy was unsympathetic and no help and now by the time I got referred I was doing better. Hot baths are about the only thing that seemed of some relief. Good Luck and Take Care-Net
Quote from: Patze on May 13, 2009, 05:53:36 PM
Hi Jaygee,
I don't get the rash, but I get the Livedo Reticulitis patterns (if nothing else, they are interesting to look at! ;) :D).
Same here :D I told my husband that my livedo makes me look like an alien, especially when I am very pale at the moment.
Hi dbab,
That is a good one! I'll have to remember that line the next time someone asks about it! ;D
Patze
THis is very common, one of my biggest issues