kalamazoo Posted February 23, 2012 Report Share Posted February 23, 2012 Does anyone have any kind of swelling in any way shape or form? If so, when and how does it present itself. I also have erythromelalgia and am trying to distinguish the two disease but doctors are of no help sadly. So I'm seeinh which symptoms others have with the same disease. I get swelling of my hands knees and especially feet/legs. Quote Link to comment Share on other sites More sharing options...
Katybug Posted February 23, 2012 Report Share Posted February 23, 2012 I had an old C4a blood test that was really high from when I had Lyme disease (4 yrs ago). When I took all my old records to this immunologist, he retested my C4a and it is off the charts high. C4a is a protein in the immune complement system known as an anaphylatoxin. It is considered an inflammatory marker for chronic Lyme and several autoimmune inflammatory diseases such as rheumatiod arthritis and psoriatic conditions. Anaphylatoxins cause inflammation, vascular permibility, smooth muscle contraction, and anaphalactic reactions. I thought maybe I had MCAD but it turns out those mast cell type symptoms are coming because C4a causes mast cell degranulation. So, my issue is really coming from upstream of the mast cells. If we can turn off the C4a, we can turn off a lot of my issues. I also have pain in all major joints and all of my skin basically feels bruised all of the time, along with IBS type symptoms and migraines.We can not pin point an exact diagnosis as I do not test positive for any specific, known disease. I have 90% of the symptoms of Lyme and most autoimmune inflammatory diseases but nothing specific enough to give it a name. My doc calls it "Katie Disease". He says there are at least hundreds, if not thousands of autoimmune diseases they haven't named yet because they just don't know enough. We are currently trying prednisone (its been just over a week) and are having some good success. I wake feeling pretty good now but decline through the day...but I don't expect it to all go away overnight. It took a long time to get this sick. I expect it will take my body tissues a long time to heal from this level of inflammation and for this length of time.Let me know if you have more questions. I am happy to answer them.Katie Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted February 23, 2012 Report Share Posted February 23, 2012 in high flow POTS there is redistributive blood flow increases in the hands and feet. You should check that out. Quote Link to comment Share on other sites More sharing options...
kalamazoo Posted February 23, 2012 Author Report Share Posted February 23, 2012 Wow thats interesting Katy, thanks for all of that info and i hope you finally find a true name to your disease!And that high flow pots, after doing some reseach sounds spot on to the symptoms I'm experiencing. Plus I have erythromelalgia which always complicates things. Quote Link to comment Share on other sites More sharing options...
sue1234 Posted February 23, 2012 Report Share Posted February 23, 2012 My hands swell. I get these random flashes that start in my chest, go up through my head, then down my arms into my hands. It totally feels like a big vasodilation epidose. Everything then pools in my hands and my fingers swell and turn really red. I have developed alot of wrinkles on my fingers due to the back and forth swelling. Quote Link to comment Share on other sites More sharing options...
MomtoGiuliana Posted February 23, 2012 Report Share Posted February 23, 2012 I have mild swelling from time to time in my hands (usually when I wake up I notice this and it gets better as I move around) and also I get swelling in my ankles/lower legs if I am not moving around much )eg at work stuck at computer/desk. Quote Link to comment Share on other sites More sharing options...
Guest Alex Posted February 23, 2012 Report Share Posted February 23, 2012 none whatsoever, even when I'd increase my salt intake and drink 3+ liters of water a day. At least I know my kidneys are working properly . Quote Link to comment Share on other sites More sharing options...
bellgirl Posted February 23, 2012 Report Share Posted February 23, 2012 I have swelling in my hands and feet and ankles at times. I am on a diuretic for the ankle swelling, which is worse in the summer or if I have been standing too long... Quote Link to comment Share on other sites More sharing options...
kmichaelson Posted February 23, 2012 Report Share Posted February 23, 2012 My hands and feet swell like others have said. I especially notice it in my hands because they get super itchy and red when it happens! Quote Link to comment Share on other sites More sharing options...
juliegee Posted February 23, 2012 Report Share Posted February 23, 2012 I swing between Reynauds & Erythromelalgia. When I am very busy of stressed (even standing!) my hands and feet vasoconstrict. and no blood gets to them. However, after eating, if I sit down- my hands (and feet) turn hot, red, and swollen. I suspect that you (and I have) small fiber neuropathy- which is often cormorbid with POTS Quote Link to comment Share on other sites More sharing options...
Wendy C. Posted February 23, 2012 Report Share Posted February 23, 2012 No swelling at all, not even during my pregnancy. Salt and fluid loading doesn't make me swell either. Quote Link to comment Share on other sites More sharing options...
puppylove Posted February 23, 2012 Report Share Posted February 23, 2012 When my feel get really purple they swell a little too. Blood pooling I guess? Quote Link to comment Share on other sites More sharing options...
kalamazoo Posted February 24, 2012 Author Report Share Posted February 24, 2012 I swing between Reynauds & Erythromelalgia. When I am very busy of stressed (even standing!) my hands and feet vasoconstrict. and no blood gets to them. However, after eating, if I sit down- my hands (and feet) turn hot, red, and swollen. I suspect that you (and I have) small fiber neuropathy- which is often cormorbid with POTS This is so weird, I'm the exact opposite. My legs and hands pool and when after eating I constrict. Quote Link to comment Share on other sites More sharing options...
LindaJoy Posted April 19, 2012 Report Share Posted April 19, 2012 My legs and hands pool, usually, as well, then constrict after eating. My feet and hands will then go blue and get very cold. Very strange. I'm a mess.Linda Quote Link to comment Share on other sites More sharing options...
chipper Posted April 19, 2012 Report Share Posted April 19, 2012 My swelling is exactly as dizzyblonde describes and the super itchy, what is that all about? Quote Link to comment Share on other sites More sharing options...
fiona-jane Posted April 21, 2012 Report Share Posted April 21, 2012 hiya,i dont get any swelling, even when i break bones, but that may be due to my EDS . fi Quote Link to comment Share on other sites More sharing options...
Lemons2lemonade Posted April 22, 2012 Report Share Posted April 22, 2012 I get it in my abdomen:( Quote Link to comment Share on other sites More sharing options...
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