Just wondering. Does anyone else find it better to stand up during a flare than sit or lie down with feet up? If I sit with my feet propped up it can actually start a flare. I also pace (more like plod) up and down to try and keep the swelling down as it gets hard to bend my feet otherwise. Of course, now the pain and sickness meds and cooler weather are helping I am not getting so many bad flares. My luck being what it is, it will probably all go to hell in a handcart before too long and I'll be back in full on misery mood. My glass however is half full just now and long may it continue.
Actually, yes. I'll be fine all day until I come home and put my feet up. I always thought that was odd. Glad to know I'm not alone. Misery loves company :-)
Yes I believe I get more flares at night before bed because I’m laying down and in the morning like right now but once I’m up my flare slowly goes away, I’m sure because I’ve gotten the blood flowing. Oh and when I’m hurting badly my mom says to elevate my feet because a dr. told us that but when I do it, it seems to make it worse. I’m glad I’m not alone on that one.
I hope and pray this relief lasts for you and it won’t come back too drastically!
Yes I believe I get more flares at night before bed because I’m laying down and in the morning like right now but once I’m up my flare slowly goes away, I’m sure because I’ve gotten the blood flowing. Oh and when I’m hurting badly my mom says to elevate my feet because a dr. told us that but when I do it, it seems to make it worse. I’m glad I’m not alone on that one.
I hope and pray this relief lasts for you and it won’t come back too drastically!
Yeah Tilly! Though I have flaring no matter what, but I do find elevating my legs etc causes a lot of pain!! Doctors constantly say elevate your legs and it will help and when I say it makes things worse they don’t believe me! Might help the swelling, but I don’t think it’s worth the burning it causes!. I sleep with a fan at my feet in bed, though it still doesn’t make a difference so I barley sleep!. I sleep sitting up and seem to get a good sleep lol! Because my feet are on the ground and getting good contact with the fan!. Also, recently I ain’t sleeping in bed altogether as I’m struggling so my legs are huge lol! But I’ve got a balance of sleeping on the couch as you would on your side… But only my head and upper body is lying down my legs are on the ground… It’s surprisingly not uncomfortable as it sounds! I’m not aching with the position and can sleep for hours like it!.
So glad you are finally getting a little relief Tilly! Very good to hear.
Thanks for your replies and especially your good wishes. Glad to know I am not alone on this one as I think it is rather odd bearing in mind that raising the legs should allow the blood to drain a bit and so limit the burning. Not with me it doesn't.
I don't do much walking these days as just putting anything resembling footwear on my feet causes a flare. I wear a groove in my hallway at night walking up and down. It must help in keeping my blood circulating.
Oh Lauren, how do you manage to stay so upbeat despite all the problems you have. You are an inspiration to me. I copied your use of using fleecy throws to cover me at night instead of bulky quilts. They are very warm and mould easily round the body to keep the draught of the fan out. My upper body stays warm while the fan cools my tootsies. Trying to imagine how you sleep half on and half off the sofa. If it works for you then why not?. I often sleep sitting up too, but that is more to help my breathing than the EM.
Now it is n 5pm and the EM orchestra is beginning it's daily tune up for the regular evening flare. Time for a pill at the first sign of a tingle/itch. Doesn't often work at this time of day though, it's as if my feet just have to have one flare at least once a day and evening is that time.
Wishing you all enough pain relief and sleep to get you through to the next day. Tilly
I have the same problem. I bought a recliner that I can adjust where my feet and legs are pointed. If I lie back all the way and my feet are up high they swell more. If I just lie back enough to get my feet off the ground but keep them low to the ground the swelling goes down. Right on with the cold weather. Unfortanetly my hands are my biggest concern now as I believe I've lost most of the nerve feeling in my feet. Now my hands are swollen constantly. Its like what my feet were like a year ago.
My mum bought a recliner couch for me when I was paralysed so I could sleep there too, and I don’t use it a it kills even with my feet not straight out… With it lower, plus my fan on my feet but still agony! Doesn’t help swelling much either! But I don’t think there worth the pain just to get swelling down!
If you lost all the nerve feeling you wouldn’t be able to use your hands or feet at all, wouldn’t be able to do a thing… As earlier this year when my nerve damage made me paralysed and it also happened to my hands as a nerve connected to my sensory is dead… Had to re-train and strengthen my hands as well as my feet…got told I’d never walk use my hands again! But had to fight for it. Left still isn’t great… You wouldn’t be able to feel your legs or be able to stand yourself or walk as that’s what happened to me when my nerve died … Have you got EMG testing to see if there is anything wrong? Have you been diagnosed with nerve damage? Maybe you should get it looked into but I don’t think your nerves would be dead probably damaged! Good luck Hope something shows!
I don't think they're dead yet but sometimes I can't move my toes, and I can't curl them. They go numb. Last week I noticed groves going sideways in my toenails.
I think most people would agree with you on this. It is just that if I sit with my feet up it will start a flare. I do sometimes raise my legs up but it doesn't really help the symptoms and just results in the same outcome as you. I long to relax in the evening but this is when the worst flaring occurs andit is impossible to sit comfortably. I spend most evenings walking up and down or standing on a cold tiled floor. This seems to help by getting some circulation goiing. I have forgotten what it is like to relax as I am sure many of us here can identify with. I'm sorry you have to contend with the pain from your nerve injury on top of everything else.
Best wishes, Tilly
lizzi said:
I have to keep my feet elevated most of the time. It doesn't prevent flaring but it keeps it from getting worse. Within seconds of letting my feet hang down, I get a rush of blood that causes a huge flare. If they hang down for too long they swell up, which also makes the flaring worse. I can't walk due to pain from a nerve injury, so standing or walking around is out of the question.
Toes can go numb with raynauds etc. but your toes would be always numb not sometimes and you don’t notice it over time it will just happen right away outta the blue and stay there, numbness wouldnt be the case of normal nerve damage, but if you feel that way then get it looked into.
NiceGuyDanny said:
I don’t think they’re dead yet but sometimes I can’t move my toes, and I can’t curl them. They go numb. Last week I noticed groves going sideways in my toenails.
Hi,
Yes I also find that if I sit on a chair with my feet up that they can flare more. Also if I’m lying down with my feet up but they are resting ie my heels are on a hard surface they can also flare a little. However I find if I’m lying down flat and so my legs are elevated higher than the core of my body and my feet are also resting on a soft surface ie pillows then they wont really flare and are generally cooler especially if u also put a fan on them.
I think the 2 keys are legs must be elevated higher than the core of ur body and ur feet must rest on something really soft. Dip ur feet in cool water then put a fan on them. Repeat as necessary.
Sitting with feet propped up doesn't always help me, but then you need to have the feet higher up than the level of your heart for it to help much and I never do that. Too awkward with my furniture. Standing is the worse position for me of all, but walking a bit, or pacing, is not as bad. A lot of EMers are triggered by lying down, or so I've heard.
when I try to go to sleep, I need to get up and stand bnecause the "blood pools" in my feet and the vains expand while I lay down. I also have to put feet in running water for 3 minutes but that is all. No longer since your not suppose to put feet in water. when I put shoes on I have about 20 minutes before my feet flair up when walking/standing
Lying down increases the pain and discomfort in my feet. Sitting, will my legs bent at the knees & slightly drawn in feel best. I take a lot of drugs to go to sleep because that is when the pain is almost unbearable.
I find it hard to lie flat as it impairs my breathing so that option is not good for me. What seems to work one day won't work another. I am getting a new adjustable bed shortly and hope that will help at night although no way can I think of going to bed until the flare has died down - then its window open (now it is cold here) and fan on to keep feet as cold as possible during the night - or what is left of it!
Ralapure said:
Hi, Yes I also find that if I sit on a chair with my feet up that they can flare more. Also if I'm lying down with my feet up but they are resting ie my heels are on a hard surface they can also flare a little. However I find if I'm lying down flat and so my legs are elevated higher than the core of my body and my feet are also resting on a soft surface ie pillows then they wont really flare and are generally cooler especially if u also put a fan on them. I think the 2 keys are legs must be elevated higher than the core of ur body and ur feet must rest on something really soft. Dip ur feet in cool water then put a fan on them. Repeat as necessary.
That must be really hard for you not being able to lie comfortably to sleep. I can't even think of going to bed when I am in the midst of a flare so bed time is extremely variable. Sometimes it is daylight before I can think of going to bed.. I think we all have to take the pills for pain and sleep. Nothing seems to stop the 'evening' flare from happening. I wonder why that is? Sometimes I can halt a daytime flare up becoming worse by being on my feet but the evening flare just won't stop whatever I try. Sitting is never comfortable then and if I do, I expend so much energy moving my feet every which way I can't relax at all. No wonder we are all so tired all the time. It is such a cruel affliction.
Also the drugs affect how you sleep so it is never a restful sleep that normal people expect.
Lin said:
Lying down increases the pain and discomfort in my feet. Sitting, will my legs bent at the knees & slightly drawn in feel best. I take a lot of drugs to go to sleep because that is when the pain is almost unbearable.
I never wear shoes these days. Don't go out unless to a Doctor appointment and then it is very loose flip flops and a guaranteed flare at the end by way of punishement! My feet have skin like leather now - not as good look.
when I try to go to sleep, I need to get up and stand bnecause the "blood pools" in my feet and the vains expand while I lay down. I also have to put feet in running water for 3 minutes but that is all. No longer since your not suppose to put feet in water. when I put shoes on I have about 20 minutes before my feet flair up when walking/standing
