My Ankles are so swollen I can barely bend my feet. Lasix helps a little but I don't like to take a lot of meds. I just got over a real bad flare that lasted over a week. My patience is running low. I'm hating this EM right now!
My .ankles are swollen most of the day and I hate when they are so stiff they won't bend. If I've had some decent sleep haha then they are better in the morning but the swelling soon returns on rising. This EM is a lose lose situation and I hate it too. I find walking helps to loosen the stiffness a little which is better than nothing and do lots of ankle rotation when sitting.
Brian said:.
My Ankles are so swollen I can barely bend my feet. Lasix helps a little but I don't like to take a lot of meds. I just got over a real bad flare that lasted over a week. My patience is running low. I'm hating this EM right now!
If the flare starts when standing or sitting I must get my feet elevated above my heart. I tend to take over the couch and prop my legs up on the back of the couch. If there are children in the way, they are used as human pillows. I have a husky that if I am on a piece of furniture she is allowed on..feels absolutely marvelous! I think it has something to do with the double layered coat..keeps the hot out and the cold air in...mmmm she works well on both my hands and feet. I have not tried her on my face..way to fluffy.Of course she is not allowed up on every piece of furniture so it limits me. If the Raynouds acts up she also acts to warm the feet or hands.
All extremeties must go up and defuse before they can come back down. If I am driving or in an office, I can oftne be found holding my hands over my head.
Cindy
I agree with Lizzi, I get EM flares worse in my right leg than my left because I have a bad habit of sitting on the edge of my bed (where I spend most of my time), with my right leg dangling down but the left leg still up and folded under me. So I frequently have one red leg and one normal. If I'm flaring, the worst time of day does seem to be early morning, but it's not usually when my feet are still up, it's when I put the feet on the floor and get that WHOOSH of blood into them along with the feeling of a blowtorch on my toes. The only time I really have flares with my feet elevated is if I make the mistake of covering my feet with anything that puts pressure on them.
My EM seems to be secondary associated with lupus or RA or even Lyme disease though (I have all three), how many people here have hereditary primary EM and how many have secondary to autoimmune disease or Lyme? I wonder if it makes a difference?
tillyp said:
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.
I am just the same as you Tilly. Can’t sit for any length of time and certainly not with feet elevated. It puzzled me for ages as the two things I thought ought to help were elevation and an aspirin and neither were of use to me. I have since realised that there are many similarities among us and just as many differences. I too pace/plod for hours, in my case around my kitchen table, sometimes so tired that I stand with my head resting on the fridge. I’ve even fallen asleep while walking and woken up as I began to drop.
Oddly I started taking the aspirin again a few days ago after a leg injury made me worry about clots and the flares have diminished while the Raynauds has been dramatically worse.
Temperature seems all important too and it’s so up and down at the moment that i cant keep an even temperature and will flare if I get too warm and then flare if I get too cold.
It’s all a riddle and my head hurts trying to make sense of it.
Helo Nel, I am just beginning to realise that temperature is starting to pay a big part in how I feel recently. Don't know if it is to do with the Tramadol medication coupled with my breathing problems that is to blame. If I get warm during the day I begin to feel really unwell to the point of nearly passing out and struggling to breathe. It is quite frightening and I have even phoned my hubby to come home from work as I was feeling so bad and didn't want to be on my own. Once I cool off the symptoms reduce
until I warm up again so I am trying to stay on the cold side which I hate. Once the regular eveing flaring starts I also begin to feel better (except for the flaring} and I can even warm up my top half a bit so my teeth can stop chattering.
This EM seems to be a constantly changing beast. Just as I am getting used to one lot of symptoms another spanner is thrown in the works. There is no end to the misery. Never being able to relax is one of the worst things for me after the lack of sleep. I've had to accept my punishment for my years of smoking, but EM is such a cruel disease that robs you of normal day to day living.
I've worn a groove in my hallway walking up and down at night and I drop off with my head resting in my hands (bent elbows)when I lean on the worktop. Have banged my head several times falling asleep this way.
Aspirin has never helped me though. I hope it continues to help you as long as possible but there again even medications seem to have a restricted time limit of efficacy. Last Christmas was wonderful as Amitriptyline halted all symptoms for many weeks but then they all gradually came back and got worse than before.
I can't make sense of anything with EM either. At least I know there are others who find lying down with feet elevated a problem.
By the way, have you managed to get your referral yet that you were hoping for?
Best wishes, Tilly
Nel said:.
I am just the same as you Tilly. Can't sit for any length of time and certainly not with feet elevated. It puzzled me for ages as the two things I thought ought to help were elevation and an aspirin and neither were of use to me. I have since realised that there are many similarities among us and just as many differences. I too pace/plod for hours, in my case around my kitchen table, sometimes so tired that I stand with my head resting on the fridge. I've even fallen asleep while walking and woken up as I began to drop.
Oddly I started taking the aspirin again a few days ago after a leg injury made me worry about clots and the flares have diminished while the Raynauds has been dramatically worse.
Temperature seems all important too and it's so up and down at the moment that i cant keep an even temperature and will flare if I get too warm and then flare if I get too cold.
It's all a riddle and my head hurts trying to make sense of it.
I dread having to go to bed at night. Within seconds of lying down, I'm in pain, burning, freezing, & sometimes my feet feel like all 3 things are happening at once. I take Tramadol, 1 whole aspirin, Lorazepam & Advil PM about 9:00 pm. If I'm lucky, it will all work somewhat by about 10:30 - 11:00 pm & then I can go to sleep. However, once or twice a week, none of these meds work. Then I find that I can do one of two things. I either drink a shot or two of Peach Shnapps (the only taste I can tolerate) on top of all the meds or most recently, a friend suggested marijuana. She gave me several cookies with the pot baked into them. I broke them into 8ths & tried it (after lying in bed for an extra hour without being able to fall asleep because of the pain). Worked like magic! It's better than the Shnapps & works faster. I think marijuana should be legalized all over the USA for medicinal purposes. The amount I take is small and not used every day...only when all else fails.
Hi Tilly, just forced out of bed again at 1 am after two fitful hours, the last half hour spent trying so hard to persuade myself I didn’t have to! The temperature according to my ‘help the Aged’ thermometer is 15 and against the 15 it says “COLD - DANGER below 16 degrees C. There is a risk of you suffering hypothermia, a stroke or a heart attack. Take action…by putting on several layers of clothing”! And I am standing here with the laptop on a shelf in the kitchen, shivering so I can barely type, bare from the tee shirt down but with a fleece over my shoulders and wooly fingerless gloves. Legs and feet burning within and without. I think I am going mad.
s you say the thing never stays the same one month after the next. The aspirin thing is probably just a blip - tonight’s flare is as bad as ever. Going to have a hot drink to stave off hypothermia. Thus far at least hot drinks and food don’t trouble the EM.
what I got from the hospital last week was the dermatologist endorsing the diagnosis which after two and a half years felt like an achievement. Then I asked to be referred to the Royal Free and he instead is passing me to the Lupus clinic at St.Thomas’s. Not what I wanted but has the advantage that I can be passed within the hospital rather than having to wait for my doctor to be advised to begin the referral process which can take months. I will give it a go but with my new found knowledge from research on EM sites, if I discover I am being ill-advised by someone who doesn’t know EM I will call a halt and on my knees beg my no-interest-GP to refer me to the Royal Free.
My youngest child was adopted and had special educational needs and this so reminds me of when she was little and I had to fight the authorities every step of the way to get her some kind of education and keep her safe. It was a battle that lasted 20 years and I thought I had had my fill of struggling against professionals who should have been helping but in reality became the enemy. Now here I am 30 years later stuck in a similar battlefield. Incidentally that daughter is now a happy and wonderful wife and mother so that struggle paid off.
Good to talk to you. I hope our glasses remain at least half full. Fortunately I am an optimistic person or I think I would be out in the freezing garden inviting hypothermia to do its worst!
tillyp said:
Helo Nel, I am just beginning to realise that temperature is starting to pay a big part in how I feel recently. Don’t know if it is to do with the Tramadol medication coupled with my breathing problems that is to blame. If I get warm during the day I begin to feel really unwell to the point of nearly passing out and struggling to breathe. It is quite frightening and I have even phoned my hubby to come home from work as I was feeling so bad and didn’t want to be on my own. Once I cool off the symptoms reduce
until I warm up again so I am trying to stay on the cold side which I hate. Once the regular eveing flaring starts I also begin to feel better (except for the flaring} and I can even warm up my top half a bit so my teeth can stop chattering.This EM seems to be a constantly changing beast. Just as I am getting used to one lot of symptoms another spanner is thrown in the works. There is no end to the misery. Never being able to relax is one of the worst things for me after the lack of sleep. I’ve had to accept my punishment for my years of smoking, but EM is such a cruel disease that robs you of normal day to day living.
I’ve worn a groove in my hallway walking up and down at night and I drop off with my head resting in my hands (bent elbows)when I lean on the worktop. Have banged my head several times falling asleep this way.
Aspirin has never helped me though. I hope it continues to help you as long as possible but there again even medications seem to have a restricted time limit of efficacy. Last Christmas was wonderful as Amitriptyline halted all symptoms for many weeks but then they all gradually came back and got worse than before.
I can’t make sense of anything with EM either. At least I know there are others who find lying down with feet elevated a problem.
By the way, have you managed to get your referral yet that you were hoping for?
Best wishes, Tilly
Nel said:.
I am just the same as you Tilly. Can’t sit for any length of time and certainly not with feet elevated. It puzzled me for ages as the two things I thought ought to help were elevation and an aspirin and neither were of use to me. I have since realised that there are many similarities among us and just as many differences. I too pace/plod for hours, in my case around my kitchen table, sometimes so tired that I stand with my head resting on the fridge. I’ve even fallen asleep while walking and woken up as I began to drop.
Oddly I started taking the aspirin again a few days ago after a leg injury made me worry about clots and the flares have diminished while the Raynauds has been dramatically worse.
Temperature seems all important too and it’s so up and down at the moment that i cant keep an even temperature and will flare if I get too warm and then flare if I get too cold.
It’s all a riddle and my head hurts trying to make sense of it.
I do so sympathise Lin. I yearn for the days when I could enjoy getting under a warm duvet with my hot water bottle for at least a reasonable night’s sleep. Now I have a choice, just stay up as the house gets colder and colder until 3 or 3.30 when I can be pretty sure I will sleep - until the alarm goes off at 6. Or get to bed about 10, heavily medicated with pills and whisky and sleep for 90 minutes and then wake up burning and have to get up to a freezing house and wait until I am as ice-cold as the house and return to bed at 3, or sometimes 2.30. I do so agree about marijuana. I haven’t touched it for 40 years and wouldn’t have a clue how to go about getting some at my age but would love to see if it helped. >
Lin said:
I dread having to go to bed at night. Within seconds of lying down, I’m in pain, burning, freezing, & sometimes my feet feel like all 3 things are happening at once. I take Tramadol, 1 whole aspirin, Lorazepam & Advil PM about 9:00 pm. If I’m lucky, it will all work somewhat by about 10:30 - 11:00 pm & then I can go to sleep. However, once or twice a week, none of these meds work. Then I find that I can do one of two things. I either drink a shot or two of Peach Shnapps (the only taste I can tolerate) on top of all the meds or most recently, a friend suggested marijuana. She gave me several cookies with the pot baked into them. I broke them into 8ths & tried it (after lying in bed for an extra hour without being able to fall asleep because of the pain). Worked like magic! It’s better than the Shnapps & works faster. I think marijuana should be legalized all over the USA for medicinal purposes. The amount I take is small and not used every day…only when all else fails.
I just saw this Tlly sorry! Didn’t see it before.
Thanks so much Tilly your always so kind to me!. I sometimes wonder why I’m so upbeat as well and laugh about everything that’s happend I don’t know why lol!. Glad that my suggestion on fleecey throws has helped you some Tilly! Everyone else thinks I look uncomfy sleeping like my top body is lying down like if looks normally… But my feet on the ground! I just sit down and put my head down to my right side… Only way I sleep for ages these days! Surprinsly I get no back pain which is a bonus! But course, does nothing to help swelling so got to try bed for that matter :(.
Hope you are well Tilly xx
tillyp said:
Hello Katherine, Julie, Lauren,
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