My hands flare a lot at night, but this seems to be much worse after a day where I've used them heavily, like rock climbing.
The pain and tingling at night is much worse than anything experienced during the day.
I guess I should state my questions:
Does anyone else experience this?
And if you anticipate a bad night, is there anything you can do in advance?
My understanding is that it is quite common for people with EM to have worse flares in the later part of the day and at night. I just do my best to stay cool at night to avoid having too bad of flares.
hi, my hands and feet are always hot it seems, unless they get cold and the reynauds kicks in, but they are DEFINITELY worse after activity, after being outside, and at bedtime. it seems as though the older I get the , more heat intolerant I become. I seem to be fortunate in that while I am in pain from the heat, often feeling nauseous and dizzy from it as well, I rarely experience the pins and needle pain many people seem to have. mine is more that I feel my hands and feet are going to catch fire and burn at any moment, and once they get to that point almost nothing will cool them off. It's great that you can still rock climb and exercisen like that. I've gotten to the point where when intry to exercise my hands and feet - and my head too it seems, get so hot, swollen, red, and painful that I can't continue!
I have noticed things similar to this with my flares. I just went to my senior prom and I was dancing for like 3 hours straight and I didn’t feel any pain, not until after I sat down and relaxed to catch my breath. that was when the severe pain began. I’ve noticed that happeningore and more lately, I don’t really burn too bad until after I’m done with the task at hand and I sit down to relax. also, I burn really really bad right after I wake up, whether it’s in the morning, waking up in the middle of the night, or naps. naps seem to make it the worst. it does seem like the more activity I do, the more I will burn later when I sit down to relax.
EM symptoms are reported to get worse at night, I find although my flaresare quite constant and unavoidable I do flare much worse after a stressful day. Interesting question about “feeling” you might have a bad night…I can sometimes predict a bad night so in that case I either increase my medication a bit or I have found this new AMAZING natural product called SKULLCAP, it’s available in health store over the counter in canada, not sure about the rest of the world… Hope this helps!
I wouldn't say it's a "feeling." It's repeatable, and therefore, predictable. If I rock climb or do some sort of manual labor with my hands during the day, my flares that night are much worse than other nights of similar temps.
How does skullcap help?
If my medication at the moment is low-dose aspirin, would taking an additional aspirin before bed likely help? ...I guess I'll try this and see. =)
Dominique said:
EM symptoms are reported to get worse at night, I find although my flaresare quite constant and unavoidable I do flare much worse after a stressful day. Interesting question about "feeling" you might have a bad night..I can sometimes predict a bad night so in that case I either increase my medication a bit or I have found this new AMAZING natural product called SKULLCAP, it's available in health store over the counter in canada, not sure about the rest of the world.. Hope this helps!
hi sunshine - the question I would ask you is why you are taking aspirin. is it for coagulation prevention or is it to help decrease flushing or for pain? I'm not veryclear as to how aspirin - especially low dose - helps prevent or decrease pain from EM flares. I would be very interested to know the answer.
as for skullcap, there are supplements sold under this name, but I believe there is more than one botanical product sold under this name so it would be good to know which one is the intended product.
so when you rock climb, do you find your hands and fingers throb for sometimes days afterward? do all activities tend to cause flare conditions? when you finish climbing, do you do anything in particular to try to prevent a later flare? I'm curious not so much because I used to rock climb and can't any longer, but because I find that when I have intensely used my hands for anything weight bearing I find that it almost seems I have rheumatoid arthritis or something for days afterwards and my hands remain hot, swollen, and painful.
Linda
sunshinentrees said:
I wouldn't say it's a "feeling." It's repeatable, and therefore, predictable. If I rock climb or do some sort of manual labor with my hands during the day, my flares that night are much worse than other nights of similar temps.
How does skullcap help?
If my medication at the moment is low-dose aspirin, would taking an additional aspirin before bed likely help? ...I guess I'll try this and see. =)
Dominique said:EM symptoms are reported to get worse at night, I find although my flaresare quite constant and unavoidable I do flare much worse after a stressful day. Interesting question about "feeling" you might have a bad night..I can sometimes predict a bad night so in that case I either increase my medication a bit or I have found this new AMAZING natural product called SKULLCAP, it's available in health store over the counter in canada, not sure about the rest of the world.. Hope this helps!
Linda, for people who have EM secondary to polycythemia vera or essential thrombocytosis, aspirin can effect a total or near-total relief of symptoms for up to a day or two after the dose of aspirin. Because of this, doctors seem to toss out aspirin as a first-line therapy for EM. If the EM goes away, the person has one of those two disorders. However, if someone does not have immediate and striking relief from aspirin, there is no reason to keep on taking it because it only works for EM caused by those two disorders.
Ellie - thanks! Great info to have. I wonder if other anticoagulants like plavix etc work as well for those. my knowledge base in that area is obviously not very high :)
Linda
As Ellie suggested, that was my doctor's first line treatment plan. I've only been trying it a few weeks. It didn't seem to do much immediately, but there has been less flaring this last week or so.I climbed last night, and my feet flared a lot, but my hands only flared a little, and I didn't flare last night (at least, not enough to wake me up). It was a bit cooler of night, too, though. So that may have more to do with it.hi sunshine - the question I would ask you is why you are taking aspirin. is it for coagulation prevention or is it to help decrease flushing or for pain? I'm not veryclear as to how aspirin - especially low dose - helps prevent or decrease pain from EM flares. I would be very interested to know the answer.
Sometimes my hands are red, hot, and swollen for days. (The aspirin seems to have reduced that. I worked outside on Saturday with a pick axe breaking trail, and my hands were fine afterwards.) Sometimes the flaring resolves very shortly after I stop climbing, then comes back that night with a vengeance.so when you rock climb, do you find your hands and fingers throb for sometimes days afterward? do all activities tend to cause flare conditions? when you finish climbing, do you do anything in particular to try to prevent a later flare? I'm curious not so much because I used to rock climb and can't any longer, but because I find that when I have intensely used my hands for anything weight bearing I find that it almost seems I have rheumatoid arthritis or something for days afterwards and my hands remain hot, swollen, and painful.
Running makes my feet flare. I've pretty much quit running. Anything less extreme cardio, it depends on the temperature.
This really just started for me. It started over the winter; I am just getting to know how it's going to affect me as the temperatures get warmer. So I don't have any tactics for preventing anticipated flares. I was hoping other people might suggest tactics ... or to find out if that's even normal.