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I am going to get tested for dermatomyositis this week. However, in the meantime, my ankle and lower leg is swollen and very painful. I read that edema is not painful. So this must be something else. I did not injure my ankle or leg in any way. The swelling on my leg above the ankle feels nice and warm, but below that on the other side is extremely cold. The bone on my ankle is a bit large and pointy, a bit red and it hurts. I cannot wear winter boots. At times this area is warm and throbbing. I can feel my heart pounding all the way down in the bottom of my foot in the heel area.
I am scared that I have a blood clot in my leg or a pulmonary embolism, as there seems to be a correlation with dermatomyositis… And I have many symptoms of dermatomyositis.
Can anyone help me? I am going to see a rheumatologist on Tuesday. But this could be life-threatening… Should I be treating this as an emergency?
Hi MJ, Yes, I’d treat this as an emergency! As a patient population, we are prone to coagulation issues (although each of us is a bit different, of course). This is the case even without dermatomyositis… When the emergency is over, please ask your doctors to also check you for genetic disorders of coagulation (discussed on my video about thrombosis, MTHFR, etc). Folks who have these disorders are even more prone to clotting, and go down much harder than others. Although I have no genetic disorders of clotting, it is heavy in my family (researching why now!) and I remain on blood thinners. I, too, had a DVT back in ’97. All resolved OK, but I remember my fear of stroke, heart attack, etc all too well. Now get off of the computer and GO! 😉
Thank you Dr. Diana! Now before I literally go running off to emergency, my entire leg is not swollen. It is just the area immediately above my ankle on that side – going maybe 2-3 inches up my leg. And I would say it is mild swelling; at first I didn’t notice it; I thought it was just the ankle. Does this change your view, or still an emergency?
Also, the doctors would look at me funny if I asked them this, but hopefully you won’t LOL! When I drink Coca-Cola, I go from a completely non-functioning state to functioning well. And this is not just a little caffeine fix. We are talking about going from not functioning to functioning. I am wondering if the caffeine is helping to dilate the blood vessels… and perhaps if this would support the theory of a blood clot? Perhaps the dilation allows some blood to pass by the clot, or does a clot just completely block the vessel? I really have no idea…
Did you find out if it was a blood clot? I have weird symptoms where my leg feels like its working less.. Also when I wake up in the mornings my arms are always asleep and have cracking bone joints with stomach issues.
I have similar questions, as the Coke *really* throws me off!!! I can toss out guesses all day long, but honestly, I see some imaging in your future! BTW, “usually” suspected clots should be evaluated fairly urgently because the window for treatment is so narrow. Veeeeeeerrrry interesting! 😉
Do you have any muscle problems as well?
My muscles work well, but I am having a lot of pain from simple things, particularly in my shoulders, but other areas as well. For instance, and I am sure a lot of people can relate, I have to lay on my Tempur-pedic adjustable bed to brush my teeth. I put it in a position comfortable for my neck. I even use an electric toothbrush, but my arm and shoulder are so sore just holding up the toothbrush!!!
I have similar questions, as the Coke *really* throws me off!!! I can toss out guesses all day long, but honestly, I see some imaging in your future! BTW, “usually” suspected clots should be evaluated fairly urgently because the window for treatment is so narrow. Veeeeeeerrrry interesting! 😉
Okay, well I literally just got home from getting my ankle and foot x-rayed. I guess depending on the results, perhaps an ultrasound or MRI is next?
Dr. Diana, I have a rheumatologist willing to send me for whatever testing I need. Can you please help me? He wants angiograms of my brain and heart. What do I need to test for CCSVI? Angiogram of neck? Please advise of any testing you think I should get. Many thanks.
My GP has no knowledge of EDS. She is trying her best and reading up on it. Can she email you through the medical professional part of your contacts?
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