It’s possible the lack of oxygen or cyanosis in my nailbeds and fingertips is related to polycythemia vera or thrombocythemia. I am seeing a hematologist this week. Perhaps I will get some answers. Thank you sheltie and Carter for getting back to me. I will let everyone know what I learn.
Thanksgiving blessings to all, Beth
Good luck, Beth!
is aspirin working for you ?? Because I thought that if it was thrombocytemia, aspirin will work.
Thanks for the good wishes, Carter. I just resumed aspirin, Carine, so it is too soon to tell if it helps. But I am donating blood tomorrow to reduce my red blood cells in case I do have polycythemia. The last thing I need is a blood clot! And it may help my symptoms. Know any vampires, anyone? 
Beth
Carine said:
is aspirin working for you ?? Because I thought that if it was thrombocytemia, aspirin will work.
What was you hematocrit, Beth? I had 4 phlebotomies over a 2 month span this spring. I found them to be helpful. Though my symptoms eventually did end up worsening again, it never went back to being as bad as it was before they removed that blood. My HCT started up around 53% and was dropped to just below 44%. When I last had it checked in September, it had rebounded to 49.5%. That's normal, but robust, for a male. I should probably get it checked again in December.
My Hematocrit was 41 in September. Any thoughts? Beth
CarterDK said:
What was you hematocrit, Beth? I had 4 phlebotomies over a 2 month span this spring. I found them to be helpful. Though my symptoms eventually did end up worsening again, it never went back to being as bad as it was before they removed that blood. My HCT started up around 53% and was dropped to just below 44%. When I last had it checked in September, it had rebounded to 49.5%. That’s normal, but robust, for a male. I should probably get it checked again in December.
I don't know. That's in range for a female. I saw the most improvement after the first couple phlebotomies, though it took a few days to see an effect. My HCT was modestly out of range before my first phlebotomy. The normal range for a male is 40-50. I was running about 51.5 to 53%.
I had elevated hematocrit, but my RBC count was in range. It's beyond my knowledge to know if you can have normal HCT with elevated RBC. I don't know. Thrombocythemia is an elevated number of platelets. Your HCT number isn't going to give much insight there. My platelet count was always normal.
Which do you have? Polycythemia or thrombocythemia? Is it easy to control? Do you feel well? Ever have any of my symptoms? Thanks, Beth
I was modestly polycythemic. That just means I had an elevated red blood cell count. It's basically just the reverse of anemia (a low red blood cell count). Anemia and polycythemia are not conditions, in and of, themselves. They are symptoms. Their cause can be serious (cancer) or something more benign (poor diet).
Polycythemia vera is a type of slow growing cancer. There is a blood test for that (the JAK2 mutation). I didn't have that.
So why was I polycythemic? Who knows. Around 18 months prior I was anemic. My doctors were initially very concerned by that, as it's unusual for men to become anemic (we don't menstruate and i'm not a vegetarian). Despite testing, my doctors never could figure out why I became anemic. Any guess for why I became polycythemic would be conjecture, as well.
Oops, I forgot to answer the rest of your questions! I actually feel pretty well. Mexiletine has allowed me to resume working out. I was exceptionally fit prior to my recent health problems, so I still have a decent base to work with. I don't think I have any of the symptoms you've described. The only unusual symptom my treating physician has not been able to explain is that I have skin peeling. That might seem relatively normal for EM, except that it's not where I have EM symptoms. My EM symptoms are at my knees and the skin peels on my feet and arms. He doesn't have an answer for that.
But do I feel sick or unwell? No, I don't. Even my overall level of discomfort now is typically very low or non-existent. Right now I'd describe my condition as "it's not perfect, but it's good enough."
Very good news Carter !
Carter, you are so lucky to be doing so well with your EM. I wonder if your skin peeling is a result of circulatory problems. I’m phasing out Mexiletine. It didn’t help, and I had major heartburn from it. I read that it can also cause tingling & numbness, so I hope my symptoms improve. I hope to start midodrine cream soon. I’ve graduated to Percocet. The hematologist I saw today said I don’t have polycythemia or thrombocythemia. Yay!
Like you, my EM occurred as a result of my exercise regime. I wonder how many athletes have acquired EM because of their activity. I used to do 35-40 miles weekly on my elliptical machine, which I bought in Nov. 2013. For 10 months I aggressively pushed off on the machine’s pedals, putting all my weight on my toes, especially the big toes & balls of my feet, where a major nerve runs. I wore open-toed sandals, too, & no socks. After a few months my big toes went numb. Then last September they imploded, with burning, electric shocks, stabbing, stinging & pressure sensitivity so bad I still walk on my heels & the sides of my feet. Now cashiers mats cushion the floors in my house & I stand on folded towels to shower. My EM blossomed last July. Oddly, my right foot & leg are worse than my left.
The only exercise I get now is 30 minutes maybe 4 times a week, standing on a heavily padded platform that bridges the pedals of my elliptical. Standing in one place is the worst, but it’s my only exercise: I work the handlebars of my machine for a little cardio. (I have a bad tailbone, so sitting is difficult, & severe osteoarthritis at the base of my thumbs eliminates weight lifting.) Recently the EM spread to my hands, right arm, & maybe my face. I’ve not driven for a year & am housebound, in bed most days, with my feet elevated. Like everyone here, I never knew this could happen. I struggle to keep bad thoughts at bay and dread next summer’s heat.
Anyway, that’s my story. I’m grateful for the kindness of everyone in this group. There’s far too little of it in this world.
I close wishing you all a happy, pain-free turkey day!
Beth
CarterDK said:
Oops, I forgot to answer the rest of your questions! I actually feel pretty well. Mexiletine has allowed me to resume working out. I was exceptionally fit prior to my recent health problems, so I still have a decent base to work with. I don't think I have any of the symptoms you've described. The only unusual symptom my treating physician has not been able to explain is that I have skin peeling. That might seem relatively normal for EM, except that it's not where I have EM symptoms. My EM symptoms are at my knees and the skin peels on my feet and arms. He doesn't have an answer for that.
But do I feel sick or unwell? No, I don't. Even my overall level of discomfort now is typically very low or non-existent. Right now I'd describe my condition as "it's not perfect, but it's good enough."
I don't know that i'm lucky, Beth. Lucky would be not having EM at all, LOL. I am grateful that mexiletine has made a difference for me. I wish it had worked for you.
One thing I should point out is that my knees don't always look totally normal. When I stand they are always red. Sometimes they can even appear mottled, a combination of red and purple. It looks like something that would be painful. The difference with mexiletine is that it doesn't feel painful. It looks worse than it feels. My doctor says that's because mexiletine blocks the pain signals from being sent. The other big difference is that it never seems to escalate to a flare. The skin doesn't get hot. That's important.
Mexiletine is a local anesthetic. I'm pretty sure all that's happening is an anesthetic effect. The EM is still there. I just can't feel it. Because I can't feel it, it never escalates to a flare.
I asked my doctor about a midodrine cream and he said he wasn't sure if the compounding pharmacy he uses could make that. Do you have a supplier for that yet?
I think it's good you don't have polycythemia vera or thrombocythemia. It's always better to not have more diagnoses thrown on top of the one you already have!
I hope you have an enjoyable Thanksgiving!
Hi Beth,
I empathize with you. My EM has recently spread to my hands, and I believe it is inside my gut as well. Like you I have cyanosis in my hands and feet (especially the first part of the day). This switches to EM at night, though lately I've been having "attacks" of cyanosis along with palpitations, chest tightness, and shortness of breath.
I've been seeing a hematologist who is currently testing me for porphyria, another blood disorder. I'm wondering whether she should also be checking for polycythemia. My last hematocrit was 46.2%, slightly above normal for a woman (34.0 - 46.0). Hemoglobin also slightly high, but red cell count in normal range. Why did your hematologist suspect polycythemia or thrombocythemia?
I am so very, very sorry to hear that the EM may be in your gut as well, geekgirl. Doctors know so little about this condition, I don’t put it past EM to attack any part of the body. My cheeks burn more and more lately. Right now my nail beds are burning but my hands are ice cold. But my fingers are so pressure sensitive, I could not bear to wear anything on them. Even partial gloves could set off the hypersensitivity, severe “bee stinging” and cyanosis. Thank heavens for dictation on my iPad. I don’t know what I’ll do if I lose this window on the world. The past week or two I have had to switch to using the side of my little finger to (lightly) touch the screen of my iPad. I can hardly bear to hold or touch things with my fingers anymore. Oddly, the cold does not bother me like it does you. The thermostat is down to 65° and my poor husband has had to purchase special insulated booties and fleece-lined flannel shirts while I run around in shorts and a T-shirt and keep the ceiling fan intermittently going day and night.
My doctor tested me for polycythemia and thrombocythemia just to be on the safe side. He will continue to do so periodically, even though repetitive trauma likely caused my EM.
We have to be strong all of us. I’ve been pretty down – even a few weeks ago I was doing better than this. Funny how everything is relative. EM is a real Sherman’s march through your body. Let’s none of us give up, geekgirl & my fellow EMers.
Beth
graciousgeekgirl said:
Hi Beth,
I empathize with you. My EM has recently spread to my hands, and I believe it is inside my gut as well. Like you I have cyanosis in my hands and feet (especially the first part of the day). This switches to EM at night, though lately I’ve been having “attacks” of cyanosis along with palpitations, chest tightness, and shortness of breath.
I’ve been seeing a hematologist who is currently testing me for porphyria, another blood disorder. I’m wondering whether she should also be checking for polycythemia. My last hematocrit was 46.2%, slightly above normal for a woman (34.0 - 46.0). Hemoglobin also slightly high, but red cell count in normal range. Why did your hematologist suspect polycythemia or thrombocythemia?
Something that I have noticed that is rather odd. About every two weeks or so I have a reasonably "good" day, which I've finally pinpointed is a day that I was constipated. My feet don't hurt as much, I am able to walk and stand longer, and my Raynaud's and EM symptoms lessen. I was very lucky, Thanksgiving day was one of those days and I was able to do a lot in the kitchen (I really miss not being able to cook gourmet meals).
It seems that my gut nerves are the trigger. If they are calm the rest of my nerves are calmer too.
The past several days I have been taking reduced doses of Levsin, an IBS drug, in the mornings (I'm super sensitive to meds). It seems to have been helping quiet my gut nerves so my days aren't as bad.