Here in the UK the summer has finally arrived this week with scorching temperatures. Great for many but not EM sufferers, not at all!
How are you coping? Any new 'cool tip' discoveries to share with fellow members?
Let us know how you're doing.
One simple effective cooling device is a big soda bottle, filled with water. Keep it in the freezer and use it whenever. It stays cold/cool for a long time. Just remember - don't fill it up to the top - it needs space to expand when the water freezes.
That's a good idea when you are home Domina, but not so good if you have to go out somewhere, as it wouldn't take long for the water in a soda bottle to melt in the temperatures we have been having in the UK. I can sort my feet out when I am home by putting them in a bowl of cold water and then topping up with either ice cubes or water out of the fridge. I can't tell you the result yet, but I have just ordered a mini fridge which plugs into the cigarette lighter in a car or if you are visiting someone you can get a mains adapter and plug it in there. I intend to put my spare ice packs for my foot wraps inside the mini fridge so that I always have a set that is cold wherever I am. I will report back on how well that works when I have got it and tried it. My feet and legs are my worst problem, but people could do similar if it's their hands that are worse. The other thing which has been said previously is that a ceiling fan in the bedroom and have that going all night helps. Of course, that might be a problem if you have a partner that is always colder than you are, which was the case with me until last year, but my husband passed away last November so now I can use it without upsetting him.
sheltielife said:
That's a good idea when you are home Domina, but not so good if you have to go out somewhere, as it wouldn't take long for the water in a soda bottle to melt in the temperatures we have been having in the UK. I can sort my feet out when I am home by putting them in a bowl of cold water and then topping up with either ice cubes or water out of the fridge. I can't tell you the result yet, but I have just ordered a mini fridge which plugs into the cigarette lighter in a car or if you are visiting someone you can get a mains adapter and plug it in there. I intend to put my spare ice packs for my foot wraps inside the mini fridge so that I always have a set that is cold wherever I am. I will report back on how well that works when I have got it and tried it. My feet and legs are my worst problem, but people could do similar if it's their hands that are worse. The other thing which has been said previously is that a ceiling fan in the bedroom and have that going all night helps. Of course, that might be a problem if you have a partner that is always colder than you are, which was the case with me until last year, but my husband passed away last November so now I can use it without upsetting him.
I use that bottle when I go out - that's just it - it stays cool for so long even in warm/hot conditions that I can roll my feet
on the bottle to cool them down, or put my hands around it. The temps here in Virginia are now around the 80 to 85 degrees with plenty of sunshine.
Tomorrow we expect to have the hottest day in the Netherlands EVER! 41 Celsius/105.8 Fahrenheit. I hope it will be alright. I don't have any airconditioning, so it is really hard even so at the moment. Especially since I already have a fever for +3 months.
I think maybe I should move to Alaska or something...
Freezing large bottles of water, as Domina mentions, and standing them in a shallow dish in front of a fan .... do it yourself airconditioning ...... does work very well in a small room or if you can sit near to the fan. I've also used cool box ice packs the same way. Maybe you could try this Ellen and let us know if it helps you get through your heatwave.
Since going on Venlafexine in April, the heat nor the exercising has caused any greater issues. About 75% improvement in feet and 50% in hands with flare ups being very mild and non eventful.
That's brilliant Sky that you are a lot better on your medication, presumably due to less stress levels? I wish I could try it, but can't as I already have a fast heart rate and high blood pressure, which are amongst the possible side effects.
I bring ice packs with me in the car and do a few minutes of shopping and back to the car I go for 15 min on ice pack. I can go to a couple of shops doing that. No long hikes though and I have to be very careful about which shoes I wear, no rubber foot beds - if the foot beds of the shoes have a microsuede foot bed I do much better.
Hi Domina,
I think I said this before on the site: my neurologist told me he has only had one other patient with EM and she always arrived with a frozen pop bottle and would immediately sit down, remove her sandals and roll the bottle under her poor redhot feet throughout the appointment. I think a bottle completely frozen through would stay very cold for long enough but of course is fairly heavy to carry on public transport.
Domina said:
I use that bottle when I go out - that's just it - it stays cool for so long even in warm/hot conditions that I can roll my feet
on the bottle to cool them down, or put my hands around it. The temps here in Virginia are now around the 80 to 85 degrees with plenty of sunshine.
I don’t like to be negative but my feet and legs are not coping well at all. Very swollen from the knees down and more painful than ever before. I’m resorting to dunking in cold water though I know I shouldn’t and just looking forward to the morning and the return of my normally slender legs and feet. It’s like having two sets of legs. I keep blinds down on the south and east facing part of the house and windows open on the north and west to get maximum draught through the house but these big old Victorian houses heat up and retain the heat in the Summer while in Winter icy draughts come up through the floor and we can’t get warm!
I'm joining you Nel, just the same feet and legs up to my knees are really bad at the moment. How cold do you have your water? I have a photographic thermometer that reacts very quickly and I am finding that if I set my water at around 17 or 18 degrees that is far better than really cold. That might sound warm but due to the physical properties of water it is far better at extracting heat from your feet and legs than air is. I keep topping up with water out of the fridge or ice cubes in this hotter weather. My left leg is much more swollen than my right for some reason and that's the one with the ulcers on my feet, due to poor circulation I suppose because of PV. The other problem I have is that due to the fact that the blood doesn't get down easy putting my feet up actually bothers me more like during the night. It's swings and roundabouts if they are up the EM side of things is better but down my circulation is better. That's the other thing I wish I had never had done cavity wall insulation. They told me it would help to keep it cooler in the summer, but that is rubbish as I have big windows facing the sun and so the rooms get hot, but don't cool overnight and that's having outside awnings to help to keep the sun out.
I don’t have a thermometer but have usually had the water lukewarm but must admit that last night I had it cold direct from the tap. I keep taking my feet out of the water and drying them before dunking them again so they aren’t continuously wet. I tried frozen socks but my feet are just so hot that the socks dry out in minutes and then I am ripping them off and feeling worse than ever. Looking for a silver lining - my baby grandson has extra long sleeps in the heat and when he is awake he is loving the outdoor life, sitting in a shady part of the garden and filling his sand bucket, and sometimes his shoes, with soil and stones:)
Due to my ulcers having dressings on I can't get my feet wet and so what I do that you might like to try is to put my feet in freezer bags first and then they don't get wet at all. Those were the days when we were young and carefree like your grandson! If only we appreciated it at the time.
The neuropathy subsided within 2 days of beginning the med. My mental health improved 2-3 weeks later, so i don’t believe the reduced stress level from Venlafexine helped my EM, but the physiological element of the Seratonin uptake. I wonder if it would be worth trying smaller dosages to see if it helps you. I was prescribed 150mg per day but after a month I tried just 75 mg per day with the same good results. I may halve it again and see.
I have not moved forward since November. Can't wear my compression stockings, legs scarlet, burning, swollen. My only appointment since December will be 20th July. I recommend an NHS survey to establish the number of people suffering and the range of helpful treatments???
That would be a great idea, but I don't think there is much chance of the NHS doing a survey at the moment. It's in such a bad way that it's bad enough getting treatment for the common illnesses let alone the rare ones.
had a flare last night on top of my swelled ankle,but managed to get it controlled before bed.The thing I ddont understand with this and maybe someone will know.When my feet are not burning most of the time they are freezing cold arghhhh. Talk about yin and yang lol. Do your feet feel cold before you have flare? xx
Mine are never cold, but my hands are quite often when my feet are worse than normal. These days I don't have flares it's just there all the time unless I keep them in my bowl of water inside freezer bags. A dermatologist said that he didn't think it was EM as that doesn't happen you only have flares, but someone on here said that it's possible to be like that all the time.