Hi guys, just experienced the worst night since being diagnosed with EM.
Normally I flare up once a night for about 3hours but last night tbe flare did not stop, lasted about 7 hours and this morning I’m finding hard to walk, also my toes on one foot have taken on a purple hue…last night I had MAJOR swelling which I attributed to wearing boots while having dinner at the restaurant.
Any suggestions on how to ease the swelling? I’m usually very optimistic but this has me feeling frightened. Thanks!
I really do not know any secrets for the swelling
Oh My Last night was a super bad Flare night also, I am also trying to figure out why this happened.
Hi there, sorry to hear your flaring has increased.
I’m sorry to say but this could happen more frequently. I don’t get flares my EM lasts all day and every flares can last days. With this I get severe swelling up to 3-5x the normal size of my feet and legs. Doctors and others say elevating your legs above heart level helps… It does get rid of swelling but for me and some others with EM it isn’t worth the pain as it causes terrible burning. What I have to do now is wait until bed times and that’s my only way of elevating each day to get my swelling down I’ve got to just depend on it as apart from elevating nothing really gets swelling down. Very annoying! Hopefully you are able to elevate without pain though as it saves so much hassle!
I don't know what meds you are currently taking, but my feet used to be really bad until I started taking Gabapentin. I take 3600 mg every day spread out throughout the day. Ever since I started taking it, I've been able to sleep with my feet under the covers, wear whatever shoes I want, basically get my life back. For me, Gabapentin was a lifesaver (at least for my feet). If you haven't tried it already, I recommend it. Good luck, and I hope you feel better soon.
for me elevating always worked, didnt cause me burning i even can say it helped me from swelling and burning pain as well.
This is why EM is so frustrating, Gabbapentin made my swelling 10 x’s worse. Elevating helps me, if you can do it. Sorry you had such a bad night!
True, the 'no magic bullet' issue about EM is enough to drive you nuts. Gabapentin worked on my feet, but hasn't worked on my hands. If you can, I recommend exercise as well because, despite the fact that it was difficult to do at first, it helped me mentally and maybe even physically. Elevation and cool (not cold) should do the trick, if only as a band-aid.
yay, happy to hear that! one thing is sure and that is the feet is the biggest prob, def worse than EM hands or face. feet r too hard to cool down or elevate when not at home. im happy for you that you got your life back :) i know how it feels since the same effect had sympatectomy surgery for me. tho my hands are maybe 80% good now, face and ears still suck but who cares, i love my feet now and i really appreciate every second i can walk or sleep :))
Chalx said:
I don't know what meds you are currently taking, but my feet used to be really bad until I started taking Gabapentin. I take 3600 mg every day spread out throughout the day. Ever since I started taking it, I've been able to sleep with my feet under the covers, wear whatever shoes I want, basically get my life back. For me, Gabapentin was a lifesaver (at least for my feet). If you haven't tried it already, I recommend it. Good luck, and I hope you feel better soon.
I'm so sorry to hear this, bad sleep is a killer. when my pain is too bad to bear I take cocodamol and use lidocaine patches on my feet, as well as having a cold bath and using my fan! you can get these on prescription.
Did you have alcohol at dinner? That and the high heels can cause me to flare. I find that elevation and "bicycling" my feet in the air while laying on my back is helpful. Also, walking for a few minutes in bathtub full of cool water (best up to knee)can be helpful to me.
Hello Dominique,
I hate to have to say this but EM is a constantly changing beast and unpredictable from one day to the next and in my case has gradually got much worse over the 2 years since it first made itself known.
My feet are constantly swollen, even when cold, and get even worse during a flare. So much so that I feel my feet will split open and walking is almost impossible. Raising my feet doesn't help either, it just brings on the flaring for some unknown reason. Most early evening into the following morning is when my feet flare, but sometimes during the day too.
I finally got to bed at 5a.m this morning after flaring for 10 hours and managed nearly 4 hours sleep. Fortunately it seems to be only one foot at a time at the moment and alternates day to day. I live in dread each day for the first 'tingle' to start.
I would give my eye teeth to only have it happen for 3 hoursa day and really hope that your latest 7 hour flare doesn't happen again.
Hang in there and I hope you find something that helps the swelling.
Tilly
boots arent good. heat is yur enemy when you have EMnt wear heels oten,an usually we flats.i stay away from seakers,boots, do elevate your feet. thas all i can think of with the sweling. also ear roomy soes. tigh shoes give your feet a greater possibility of swellng. thatshat my doctor told me. hope hs helps some
thats col i never heard of the cod water upt yur knee oe. d myfeet dot do too well in heels either
audrey said:
Did you have alcohol at dinner? That and the high heels can cause me to flare. I find that elevation and "bicycling" my feet in the air while laying on my back is helpful. Also, walking for a few minutes in bathtub full of cool water (best up to knee)can be helpful to me.
I, too, am helped by high doses of Neurontin (gabapentin). I take it every 8 hours, every day. That said, I do still get flares - having a bad one in my left foot, right ear, and nose today - but I know they’d be worse without the medication.
sounds terrible.nevr heard of it being the ears and nose before.and i thought i had it bad
One way to keep your feet cool it is to wear open toed shoes. It may seem silly, but I wear flip-flops & thin socks in the snow.
If you would like to try taking some 1 cup celery and same for asparagus and boil them up and then run through a blender. Sip the 2 cups over a course of 2 hrs. Both act as a diuretic naturally. Make sure you are not on any high blood pressure pills or over the cold products.I used to take Lasix and begged ny doctor for a better way than more drugs and this is what he gave me over 6 years ago, It really helps, You may want to research it yourself and get your doctor's approval if he is part of your care plan.
Hi there,
I am sorry you had a rough go of it. We all know what that is like. I also could not tolerate gabapentin and was switched to Lyrica which has helped a lot but yes my feet still swell. I take a diuretic called Lasix every day but when they are really bad I have a natural remedy I use. I juice one whole celery knob and a bunch of asparagus. Asparagus is a natural diuretic and the celery helps to replace the potassium you could lose. I sip away on it over the course of 3 hours. It has worked wonders for me. Maybe it can help.
Gabapentin was a nightmare for me but I stuck it out to the max dose with no improvement in my EM. I did however have severe Edema (swelling of feet and legs). I would gain 5 pds overnight and it would all be water weight in my legs and feet. I also walked like a drunk, had severe sinus swelling, confusion, fatigue and tremors. Then I had to ween back off it. It’s funny how a drug works miracles for one person and nightmares for another. I just started taking Lyrica, it might be helping a little but nothing really noticeable at this point. Cymbalta is the only thing that has given me noticeable improvement but I still flare all day and night, just not as bad.
Oh, I almost forgot to mention the 20lbs I gained on Gabapentin. That some good stuff (sarcastic). All kidding aside, I’m really glad it’s working for you. It is the much cheaper drug. Hopefully more people have your experience, rather than mine.