It has turned very warm here in Britain and I am thinking of buying a portable air conditioning unit mainly for use in the bedroom overnight. At present my fan just pushes the warm air around which doesn't help much in trying to stay cool.
Has anyone got one and do they find them worth the outlay? Are they any noisier than a fan on full blast?
Any input will be much appreciated.
I use AC all the time and live in Alaska. Even the quiet AC units are loud. My EM is almost continuous so my AC is almost continuous. I have one unit in the bedroom and another in the living room. I like the kind that blow out the front and NOT out the top. I like the 12,000 BTU or larger units. I use the AC directly on the bottom of the feet. I don't now how I would survive without the AC. I even take it to the doctor's office when it is 50 below. I would be glad to answer any specific questions you might have. Jim
I'm in Alabama so I have central A/C and heat. My thermastat stays on 65 year round....and I put those frozen gel packs on my arms at night. It's the only way I can get any sleep at all.
Hi tilly.
I wouldn't be able to sleep without my Air Con. It's not an expensive model, mobile and you have to empty the water (usually once per day on a very humid day).
Of course there is going to be noise, you only get what you pay for.. I also have a fan on top of the unit which helps distribute the cold air. Just like Jim below, I have mine on all through the year.
Am very lucky as my husband rescued it from being thrown out of his office when moving. I don't expect it to last very long. I had a different one approx 6 months ago that you didn't have to empty the water, it went straight out the window. That one was more efficiant and really made a difference temperature wise. It lasted around 2 years which is pretty good going. Also investing in a really good fan would help. I purchased a tower model which was far more efficient than the small, stand on a surface type.
You could always move to Alaska, I hear it's rather chilly there!
Good luck.
Hello Janice, your reply is much appreciated, and being a fellow Brit you know what our climate is like and even more so as you are not too far away from me here in Essex.
I am prepared that an A/C will be more noisy than a fan but am more worried that the noise might disturb my elderly neighbour. Will have to have a chat with her if I do get one to see if she can hear it. Not sure what one to go for yet - a bit more research to do I think. I don't have a tower fan, just a fairly big desk fan which is pretty good. I bought a Dyson Air Multiplier fan which doesn't have any blades. It is ok but noisier than the desk fan and a lot more expensive. Having said that, I don't mind the noise myself as it's just something else to get used to - like flares and pain and lack of sleep.
I see you are on Amitriptyline too but a much higher dose than I take. How long did it take to get up to the 200 dose you take?
I tried Lyrica but it made the symptoms worse and the swelling it caused has never quite gone.
Thanks again Janice.
Hope you have a comfortable day.
Tilly
Janice Garbutt said:
Hi tilly.
I wouldn't be able to sleep without my Air Con. It's not an expensive model, mobile and you have to empty the water (usually once per day on a very humid day).
Of course there is going to be noise, you only get what you pay for.. I also have a fan on top of the unit which helps distribute the cold air. Just like Jim below, I have mine on all through the year.
Am very lucky as my husband rescued it from being thrown out of his office when moving. I don't expect it to last very long. I had a different one approx 6 months ago that you didn't have to empty the water, it went straight out the window. That one was more efficiant and really made a difference temperature wise. It lasted around 2 years which is pretty good going. Also investing in a really good fan would help. I purchased a tower model which was far more efficient than the small, stand on a surface type.
You could always move to Alaska, I hear it's rather chilly there!
Good luck.
Thankyou for your input 127bama, it would be nice to have central A/C but here in Britain most houses have systems for heating as ours is a much cooler climate. I'm thinking more on the lines of a portable machine. I use the gel packs on occasion too for my feet with frozen freezer blocks under them to prolong their cooling.
Best wishes, Tilly.
127bama said:
I'm in Alabama so I have central A/C and heat. My thermastat stays on 65 year round....and I put those frozen gel packs on my arms at night. It's the only way I can get any sleep at all.
Hello Jim, thanks for your reply.
I'd be interested in how noisy the units are that you use with maybe the decibel number of the models you have. Do they vent to the outside or do you have to empty water from them? I would imagine one that blows out the front would be better for directing at the feet.
Wouldn't it be great if just for once things that helped us didn't come with side effects? Take this or that for the pain but have some swelling to go with it - stay cool but have a loud noise to distract your thoughts or cracked sore skin to remind you of your troubles.
How are your feet healing? I hope they are looking (and feeling) better than your last set of photographs. Doesn't it take ages for the smallest injury to heal?
I'd be interested to know if the prednisone treatment helped you.
Best wishes,
Tilly
Jim Weed Alaska said:
I use AC all the time and live in Alaska. Even the quiet AC units are loud. My EM is almost continuous so my AC is almost continuous. I have one unit in the bedroom and another in the living room. I like the kind that blow out the front and NOT out the top. I like the 12,000 BTU or larger units. I use the AC directly on the bottom of the feet. I don't now how I would survive without the AC. I even take it to the doctor's office when it is 50 below. I would be glad to answer any specific questions you might have. Jim
Tilly,
Not sure of the decibel level of my AC unit. 51 decibels. For AC units that is quiet, but believe me. That is loud. I pasted a picture of my unit below, but don’t know if it will made it through this system. Most of these portable (mine included) come with a window vent kit so you can vent these through a screen window. They put out lots of heat and I keep that heat inside all winter. Now I am venting outside. I have such dry air that I do not manufacturer water. If you live in a humid environment you will have to empty the water. I have a bench at a correct height so I place my leg on the bench and that is the correct height for the bottom of my feet to be up against the fins of the AC. I spend hour after hour in that position.
The feet are healing but very slow. They will heal. The bottom of the feet heal even slower than the side or top.
Prednasone……I have had “betterment” (Is that a word?). I believe to receive the most from Prednasone it must be received within 7 months of receiving EM. If that is the case there is a high chance of remission. I did the Prednasone almost 2 years after the beginning of EM. Now I do have an hour or more most afternoons when my feet are not flaring. Some days it is most of the morning and all afternoon. However I am not sure if it will hold. One day at a time. Jim
4.5 Star Rating: Good
228 reviews
Price:
$429.00
NewAir AC-12000E Portable Air Conditioner
tillyp said:
Hello Jim, thanks for your reply.
I'd be interested in how noisy the units are that you use with maybe the decibel number of the models you have. Do they vent to the outside or do you have to empty water from them? I would imagine one that blows out the front would be better for directing at the feet.
Wouldn't it be great if just for once things that helped us didn't come with side effects? Take this or that for the pain but have some swelling to go with it - stay cool but have a loud noise to distract your thoughts or cracked sore skin to remind you of your troubles.
How are your feet healing? I hope they are looking (and feeling) better than your last set of photographs. Doesn't it take ages for the smallest injury to heal?
I'd be interested to know if the prednisone treatment helped you.
Best wishes,
Tilly
Jim Weed Alaska said:
I use AC all the time and live in Alaska. Even the quiet AC units are loud. My EM is almost continuous so my AC is almost continuous. I have one unit in the bedroom and another in the living room. I like the kind that blow out the front and NOT out the top. I like the 12,000 BTU or larger units. I use the AC directly on the bottom of the feet. I don't now how I would survive without the AC. I even take it to the doctor's office when it is 50 below. I would be glad to answer any specific questions you might have. Jim
Thanks Jim for the information. The link came through fine and gave me all the specifications etc for the model. The one I have looked at here in Britain is from the De Longhi range.. My hubby can get discounts with them which will be a help if I decide to go ahead. Their decibel output is listed at 54 so even louder than yours. Will try and find somewhere fairly local to look at different models, hopefully working ones so I can compare.
Do you protect your feet with anything when having them up against the unit to cool them? It was my use of a fan so close to my feet that caused me problems which have taken since before Christmas to heal and which are still tender to touch. Now I slap on a load of thick moisturiser if I am going to have the fan anywhere near my feet to protect them. The moisturiser is Vaseline intensive rescue, moisture locking cream and is unscented. Even the creams for treating baby diaper rash are pretty good too as it creates a barrier.
Some of the brands I see recommended on this site are not always available here in Britain (and vice versa). Usually where the USA leads Britain follows but not always.
Glad your feet are healing, albeit slowly. Life is certainly more comfortable without the ulcers. I wish the Prednisone could have worked better for you as you are way worse off than me. Betterment is a proper word (had to look it up). Even a couple of hours relief must be very welcome.
Hope you had a good trip down to Oregon in the motorhome.
Thanks again for the info.
Tilly.
Jim Weed Alaska said:
Tilly,
Not sure of the decibel level of my AC unit. 51 decibels. For AC units that is quiet, but believe me. That is loud. I pasted a picture of my unit below, but don’t know if it will made it through this system. Most of these portable (mine included) come with a window vent kit so you can vent these through a screen window. They put out lots of heat and I keep that heat inside all winter. Now I am venting outside. I have such dry air that I do not manufacturer water. If you live in a humid environment you will have to empty the water. I have a bench at a correct height so I place my leg on the bench and that is the correct height for the bottom of my feet to be up against the fins of the AC. I spend hour after hour in that position.
The feet are healing but very slow. They will heal. The bottom of the feet heal even slower than the side or top.
Prednasone……I have had “betterment” (Is that a word?). I believe to receive the most from Prednasone it must be received within 7 months of receiving EM. If that is the case there is a high chance of remission. I did the Prednasone almost 2 years after the beginning of EM. Now I do have an hour or more most afternoons when my feet are not flaring. Some days it is most of the morning and all afternoon. However I am not sure if it will hold. One day at a time. Jim
4.5 Star Rating: Good
228 reviews
- 425 sq. ft. coverage area
- 12,000 BTUs
- Our #1 Selling Portable AC
Price:
$429.00
NewAir AC-12000E Portable Air Conditioner
tillyp said:Hello Jim, thanks for your reply.
I'd be interested in how noisy the units are that you use with maybe the decibel number of the models you have. Do they vent to the outside or do you have to empty water from them? I would imagine one that blows out the front would be better for directing at the feet.
Wouldn't it be great if just for once things that helped us didn't come with side effects? Take this or that for the pain but have some swelling to go with it - stay cool but have a loud noise to distract your thoughts or cracked sore skin to remind you of your troubles.
How are your feet healing? I hope they are looking (and feeling) better than your last set of photographs. Doesn't it take ages for the smallest injury to heal?
I'd be interested to know if the prednisone treatment helped you.
Best wishes,
Tilly
Jim Weed Alaska said:
I use AC all the time and live in Alaska. Even the quiet AC units are loud. My EM is almost continuous so my AC is almost continuous. I have one unit in the bedroom and another in the living room. I like the kind that blow out the front and NOT out the top. I like the 12,000 BTU or larger units. I use the AC directly on the bottom of the feet. I don't now how I would survive without the AC. I even take it to the doctor's office when it is 50 below. I would be glad to answer any specific questions you might have. Jim
Hi Tilly, I just joined the website and I am in Britain too. I haven't found a specialist to consult/get help from yet although my GP has been great. Do you know of any experts in the UK? I'm in the Southwest.
Frances
Tiilly,
Used many kinds of lotion on my feet and not sure it makes any difference. Some will tell you that it must have urea in it. Others will say it must not have any petroleum products. You can make your own decision. I am using a product called Ultra Pure MSM Lotion. It is a little more runny than I would like but does a good job.
I checked out De Longhi and like the ones with the flat face but didn’t see any that were 12,000 BTU’s? There are two ways to make an AC unit. One is like a refrigerator and the other is like a heat pump. The heat pump method uses less electricity so is cheaper to use. It is more efficient. I have the heat pump type.
I have not made the Oregon trip yet. Now looking at October 1. This is going to happen then. No snow at that time but will be near. Jim
tillyp said:
Thanks Jim for the information. The link came through fine and gave me all the specifications etc for the model. The one I have looked at here in Britain is from the De Longhi range.. My hubby can get discounts with them which will be a help if I decide to go ahead. Their decibel output is listed at 54 so even louder than yours. Will try and find somewhere fairly local to look at different models, hopefully working ones so I can compare.
Do you protect your feet with anything when having them up against the unit to cool them? It was my use of a fan so close to my feet that caused me problems which have taken since before Christmas to heal and which are still tender to touch. Now I slap on a load of thick moisturiser if I am going to have the fan anywhere near my feet to protect them. The moisturiser is Vaseline intensive rescue, moisture locking cream and is unscented. Even the creams for treating baby diaper rash are pretty good too as it creates a barrier.
Some of the brands I see recommended on this site are not always available here in Britain (and vice versa). Usually where the USA leads Britain follows but not always.
Glad your feet are healing, albeit slowly. Life is certainly more comfortable without the ulcers. I wish the Prednisone could have worked better for you as you are way worse off than me. Betterment is a proper word (had to look it up). Even a couple of hours relief must be very welcome.
Hope you had a good trip down to Oregon in the motorhome.
Thanks again for the info.
Tilly.
Jim Weed Alaska said:Tilly,
Not sure of the decibel level of my AC unit. 51 decibels. For AC units that is quiet, but believe me. That is loud. I pasted a picture of my unit below, but don’t know if it will made it through this system. Most of these portable (mine included) come with a window vent kit so you can vent these through a screen window. They put out lots of heat and I keep that heat inside all winter. Now I am venting outside. I have such dry air that I do not manufacturer water. If you live in a humid environment you will have to empty the water. I have a bench at a correct height so I place my leg on the bench and that is the correct height for the bottom of my feet to be up against the fins of the AC. I spend hour after hour in that position.
The feet are healing but very slow. They will heal. The bottom of the feet heal even slower than the side or top.
Prednasone……I have had “betterment” (Is that a word?). I believe to receive the most from Prednasone it must be received within 7 months of receiving EM. If that is the case there is a high chance of remission. I did the Prednasone almost 2 years after the beginning of EM. Now I do have an hour or more most afternoons when my feet are not flaring. Some days it is most of the morning and all afternoon. However I am not sure if it will hold. One day at a time. Jim
4.5 Star Rating: Good
228 reviews
- 425 sq. ft. coverage area
- 12,000 BTUs
- Our #1 Selling Portable AC
Price:
$429.00
NewAir AC-12000E Portable Air Conditioner
tillyp said:Hello Jim, thanks for your reply.
I'd be interested in how noisy the units are that you use with maybe the decibel number of the models you have. Do they vent to the outside or do you have to empty water from them? I would imagine one that blows out the front would be better for directing at the feet.
Wouldn't it be great if just for once things that helped us didn't come with side effects? Take this or that for the pain but have some swelling to go with it - stay cool but have a loud noise to distract your thoughts or cracked sore skin to remind you of your troubles.
How are your feet healing? I hope they are looking (and feeling) better than your last set of photographs. Doesn't it take ages for the smallest injury to heal?
I'd be interested to know if the prednisone treatment helped you.
Best wishes,
Tilly
Jim Weed Alaska said:
I use AC all the time and live in Alaska. Even the quiet AC units are loud. My EM is almost continuous so my AC is almost continuous. I have one unit in the bedroom and another in the living room. I like the kind that blow out the front and NOT out the top. I like the 12,000 BTU or larger units. I use the AC directly on the bottom of the feet. I don't now how I would survive without the AC. I even take it to the doctor's office when it is 50 below. I would be glad to answer any specific questions you might have. Jim
Hello Frances, Nice to see another Brit here although a shame you had to join because you have EM if you know what I mean.
I was diagnosed by a rheumatologist after asking for a referral. My G P had never heard of the complaint so I had to educate him a bit. I found on here that several people had been diagnosed this way. Others have diagnosis via a neurologist. I think they are the most common ways.
I see you have osteoarthritis which I believe is something a rheumatologist would deal with. Is that how you got the diagnosis for the osteoarthritis? If so a referral back there might be the next step. At the very least you could ask your GP to refer you. If possible take EM information with you. A good site other than this one is The Erythromelalgia Association (TEA), it has lots of good research material. A small fee to join if you want access to all areas but lots to read up on there.
There are two London hospitals with specialists in EM. They are Kings College Hospital (Chris Denton) and the Royal Free Hospital (Dave Bennett). Lauraflora (moderator on here) has recently had a couple of trips to Kings College may be able to help. A bit of a journey from where you are but I have no knowledge of what is available in your neck of the woods. Perhaps a letter or call to one or other of the hospitals above could point you in the right direction.
Starsmurf (another Moderator) is very knowledgeable and might be able to point you in the right direction.
Depending on how my EM progresses I can be referred to the Royal Free since seeing the rheumatologist at my local hospital. I haven't got to that point yet. My EM is apparently primary (no underlying cause).
I hope some of the above is helpful, others on here know so much more than me so maybe posting a discussion asking questions will give you better answers than mine.
Hope you find the answers you want.
Tilly
FrancesE said:
Hi Tilly, I just joined the website and I am in Britain too. I haven't found a specialist to consult/get help from yet although my GP has been great. Do you know of any experts in the UK? I'm in the Southwest.
Frances
tillyp said:
Hello Frances, Nice to see another Brit here although a shame you had to join because you have EM if you know what I mean.
I was diagnosed by a rheumatologist after asking for a referral. My G P had never heard of the complaint so I had to educate him a bit. I found on here that several people had been diagnosed this way. Others have diagnosis via a neurologist. I think they are the most common ways.I see you have osteoarthritis which I believe is something a rheumatologist would deal with. Is that how you got the diagnosis for the osteoarthritis? If so a referral back there might be the next step. At the very least you could ask your GP to refer you. If possible take EM information with you. A good site other than this one is The Erythromelalgia Association (TEA), it has lots of good research material. A small fee to join if you want access to all areas but lots to read up on there.
There are two London hospitals with specialists in EM. They are Kings College Hospital (Chris Denton) and the Royal Free Hospital (Dave Bennett). Lauraflora (moderator on here) has recently had a couple of trips to Kings College may be able to help. A bit of a journey from where you are but I have no knowledge of what is available in your neck of the woods. Perhaps a letter or call to one or other of the hospitals above could point you in the right direction.
Starsmurf (another Moderator) is very knowledgeable and might be able to point you in the right direction.
Depending on how my EM progresses I can be referred to the Royal Free since seeing the rheumatologist at my local hospital. I haven't got to that point yet. My EM is apparently primary (no underlying cause).
I hope some of the above is helpful, others on here know so much more than me so maybe posting a discussion asking questions will give you better answers than mine.
Hope you find the answers you want.
Tilly
FrancesE said:
Hi Tilly, I just joined the website and I am in Britain too. I haven't found a specialist to consult/get help from yet although my GP has been great. Do you know of any experts in the UK? I'm in the Southwest.
Frances
tillyp said:
Hello Frances, Nice to see another Brit here although a shame you had to join because you have EM if you know what I mean.
I was diagnosed by a rheumatologist after asking for a referral. My G P had never heard of the complaint so I had to educate him a bit. I found on here that several people had been diagnosed this way. Others have diagnosis via a neurologist. I think they are the most common ways.I see you have osteoarthritis which I believe is something a rheumatologist would deal with. Is that how you got the diagnosis for the osteoarthritis? If so a referral back there might be the next step. At the very least you could ask your GP to refer you. If possible take EM information with you. A good site other than this one is The Erythromelalgia Association (TEA), it has lots of good research material. A small fee to join if you want access to all areas but lots to read up on there.
There are two London hospitals with specialists in EM. They are Kings College Hospital (Chris Denton) and the Royal Free Hospital (Dave Bennett). Lauraflora (moderator on here) has recently had a couple of trips to Kings College may be able to help. A bit of a journey from where you are but I have no knowledge of what is available in your neck of the woods. Perhaps a letter or call to one or other of the hospitals above could point you in the right direction.
Starsmurf (another Moderator) is very knowledgeable and might be able to point you in the right direction.
Depending on how my EM progresses I can be referred to the Royal Free since seeing the rheumatologist at my local hospital. I haven't got to that point yet. My EM is apparently primary (no underlying cause).
I hope some of the above is helpful, others on here know so much more than me so maybe posting a discussion asking questions will give you better answers than mine.
Hope you find the answers you want.
Tilly
FrancesE said:
Hi Tilly, I just joined the website and I am in Britain too. I haven't found a specialist to consult/get help from yet although my GP has been great. Do you know of any experts in the UK? I'm in the Southwest.
Frances
Hi Tilly thanks! I had tracked down the name of Chris Denton and in fact my GP says she can refer me to him - at the Royal Free, she thinks - so that's encouraging. I did see a rheumatologist here, who diagnosed the OA, but he'd no idea what was going on with all the heat flares, so I'd rather given up on local docs. If I get a diagnosis/some treatment ideas in London I can at least return to Devon armed with that - as it is, I'm afraid people think I'm just crazy!
Have you found anything that helps? I've been reading some posts here and just realised I shouldn't be icing my knee, or even dribbling cold water on it (which has been my mainstay) so am slightly freaking out about how to control the flares! Also feeling a bit panicked about the future....
Hello Frances,
Glad your GP is being so helpful in referring you to London. Going straight to someone who knows about EM is great as it can sometimes take a long time to get to that stage. Bit of a journey for you but should be worth it. Hope you don't have to wait too long.
My EM is reasonably ok just now after going through some really miserable months. I learned the hard way about cold water,ice etc and suffered for it. Any lesions caused using these methods can take forever to heal. I'm still treating a small ulcer from before Christmas. Occasionally if I get a really full on flare then I put my feet in thin plastic bags and put them in water from the cold tap. Just squash the air out from round your feet. It works well for me, but I don't do it very often. Using a fan is fine but it caused me windburn from having it too close which cracked the skin and took ages to get better. Now I don't have the fan too close. I use a thick moisturiser (Vaseline intensive rescue moisture locking cream) at least twice a day. Night time I slap on a thick layer to my feet and put on thin cotton socks before going to bed. The fan is on all night blowing from 2-3feet away. The cream is cooled by the fan and that in turn keeps my feet cool enough for me to get to sleep (fingers crossed of course). I also spend a lot of time standing on the cold tiles in my utility room. I find standing better than sitting/lying with my feet in the air when my feet are playing up. Other people can't bear to stand.
For your knees I would maybe use some cold gel packs (not freezer blocks), protecting your skin again with some moisturiser and a tea towel between the skin and the gel pack. The gel packs are malleable to enable them to mould round your knee a bit. I have a supply of them in the fridge and take them with me if I am going out anywhere I can sit down. I wrap them in a thin cloth along with frozen freezer blocks to help keep them cooler for longer. Don't care what people think.
Have you read the replies to 'what are your top 3 ways of dealing with flare ups' posted by Scanfield?
As to freaking out, I think we have all been there, not knowing how to cope with this cruel complaint. You are among friends here and we all totally understand where you are coming from. It might be hard trying to explain the condition to those who have never seen/heard of /or experienced it. You won't have that problem here.
Hope you have a comfortable day
Tilly
FrancesE said:
tillyp said:
Hello Frances, Nice to see another Brit here although a shame you had to join because you have EM if you know what I mean.
I was diagnosed by a rheumatologist after asking for a referral. My G P had never heard of the complaint so I had to educate him a bit. I found on here that several people had been diagnosed this way. Others have diagnosis via a neurologist. I think they are the most common ways.I see you have osteoarthritis which I believe is something a rheumatologist would deal with. Is that how you got the diagnosis for the osteoarthritis? If so a referral back there might be the next step. At the very least you could ask your GP to refer you. If possible take EM information with you. A good site other than this one is The Erythromelalgia Association (TEA), it has lots of good research material. A small fee to join if you want access to all areas but lots to read up on there.
There are two London hospitals with specialists in EM. They are Kings College Hospital (Chris Denton) and the Royal Free Hospital (Dave Bennett). Lauraflora (moderator on here) has recently had a couple of trips to Kings College may be able to help. A bit of a journey from where you are but I have no knowledge of what is available in your neck of the woods. Perhaps a letter or call to one or other of the hospitals above could point you in the right direction.
Starsmurf (another Moderator) is very knowledgeable and might be able to point you in the right direction.
Depending on how my EM progresses I can be referred to the Royal Free since seeing the rheumatologist at my local hospital. I haven't got to that point yet. My EM is apparently primary (no underlying cause).
I hope some of the above is helpful, others on here know so much more than me so maybe posting a discussion asking questions will give you better answers than mine.
Hope you find the answers you want.
Tilly
FrancesE said:
Hi Tilly, I just joined the website and I am in Britain too. I haven't found a specialist to consult/get help from yet although my GP has been great. Do you know of any experts in the UK? I'm in the Southwest.
Frances
Hi Tilly thanks! I had tracked down the name of Chris Denton and in fact my GP says she can refer me to him - at the Royal Free, she thinks - so that's encouraging. I did see a rheumatologist here, who diagnosed the OA, but he'd no idea what was going on with all the heat flares, so I'd rather given up on local docs. If I get a diagnosis/some treatment ideas in London I can at least return to Devon armed with that - as it is, I'm afraid people think I'm just crazy!
Have you found anything that helps? I've been reading some posts here and just realised I shouldn't be icing my knee, or even dribbling cold water on it (which has been my mainstay) so am slightly freaking out about how to control the flares! Also feeling a bit panicked about the future....
Hello again Jim, My husband is in the plumbing and heating line and understands about heat pumps etc. He doesn't get much call for installation of full A/C as our climate is geared more to the heating side of things. I will get him to check out some portable units for me. from people who will know more about them.
Sorry you had to put your Oregon trip on hold for a while.
I have read about making sure that creams have urea in but once again it's horses for courses. I found a cream that works for me and you have one that works for you. Please just tell me you don't have your feet pressed up against the A/C without some protection on your bare skin.
Tilly,
Not sure of the decibel level of my AC unit. 51 decibels. For AC units that is quiet, but believe me. That is loud. I pasted a picture of my unit below, but don’t know if it will made it through this system. Most of these portable (mine included) come with a window vent kit so you can vent these through a screen window. They put out lots of heat and I keep that heat inside all winter. Now I am venting outside. I have such dry air that I do not manufacturer water. If you live in a humid environment you will have to empty the water. I have a bench at a correct height so I place my leg on the bench and that is the correct height for the bottom of my feet to be up against the fins of the AC. I spend hour after hour in that position.
The feet are healing but very slow. They will heal. The bottom of the feet heal even slower than the side or top.
Prednasone……I have had “betterment” (Is that a word?). I believe to receive the most from Prednasone it must be received within 7 months of receiving EM. If that is the case there is a high chance of remission. I did the Prednasone almost 2 years after the beginning of EM. Now I do have an hour or more most afternoons when my feet are not flaring. Some days it is most of the morning and all afternoon. However I am not sure if it will hold. One day at a time. Jim
4.5 Star Rating: Good
228 reviews
- 425 sq. ft. coverage area
- 12,000 BTUs
- Our #1 Selling Portable AC
Price:
$429.00
NewAir AC-12000E Portable Air Conditioner
tillyp said:Hello Jim, thanks for your reply.
I'd be interested in how noisy the units are that you use with maybe the decibel number of the models you have. Do they vent to the outside or do you have to empty water from them? I would imagine one that blows out the front would be better for directing at the feet.
Wouldn't it be great if just for once things that helped us didn't come with side effects? Take this or that for the pain but have some swelling to go with it - stay cool but have a loud noise to distract your thoughts or cracked sore skin to remind you of your troubles.
How are your feet healing? I hope they are looking (and feeling) better than your last set of photographs. Doesn't it take ages for the smallest injury to heal?
I'd be interested to know if the prednisone treatment helped you.
Best wishes,
Tilly
Jim Weed Alaska said:
I use AC all the time and live in Alaska. Even the quiet AC units are loud. My EM is almost continuous so my AC is almost continuous. I have one unit in the bedroom and another in the living room. I like the kind that blow out the front and NOT out the top. I like the 12,000 BTU or larger units. I use the AC directly on the bottom of the feet. I don't now how I would survive without the AC. I even take it to the doctor's office when it is 50 below. I would be glad to answer any specific questions you might have. Jim
Tilly,
I am sure your husband is lots smarter than me on this subject. I am an engineer but not that kind. Alaska is about the same as you during the summer. Winter is something else.
I do cream my feet at least once a day. That is my protection.
I did a first this evening. I went into and sat down and ate in a restaurant. Also took a cooler with plenty of gel packs and one cold water pack. I did not flare in there but my heal started to go off before I got home. But all in all, it was a successful evening. The gel packs and the cold water pack work quite well. I use the cold water pack on top of the frozen gel packs. I have a fear of freezing my feet without the water pack. Everyone, have a great week end. Jim
tillyp said:
Hello again Jim, My husband is in the plumbing and heating line and understands about heat pumps etc. He doesn't get much call for installation of full A/C as our climate is geared more to the heating side of things. I will get him to check out some portable units for me. from people who will know more about them.
Sorry you had to put your Oregon trip on hold for a while.
I have read about making sure that creams have urea in but once again it's horses for courses. I found a cream that works for me and you have one that works for you. Please just tell me you don't have your feet pressed up against the A/C without some protection on your bare skin.
Tilly,
Not sure of the decibel level of my AC unit. 51 decibels. For AC units that is quiet, but believe me. That is loud. I pasted a picture of my unit below, but don’t know if it will made it through this system. Most of these portable (mine included) come with a window vent kit so you can vent these through a screen window. They put out lots of heat and I keep that heat inside all winter. Now I am venting outside. I have such dry air that I do not manufacturer water. If you live in a humid environment you will have to empty the water. I have a bench at a correct height so I place my leg on the bench and that is the correct height for the bottom of my feet to be up against the fins of the AC. I spend hour after hour in that position.
The feet are healing but very slow. They will heal. The bottom of the feet heal even slower than the side or top.
Prednasone……I have had “betterment” (Is that a word?). I believe to receive the most from Prednasone it must be received within 7 months of receiving EM. If that is the case there is a high chance of remission. I did the Prednasone almost 2 years after the beginning of EM. Now I do have an hour or more most afternoons when my feet are not flaring. Some days it is most of the morning and all afternoon. However I am not sure if it will hold. One day at a time. Jim
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- 425 sq. ft. coverage area
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tillyp said:Hello Jim, thanks for your reply.
I'd be interested in how noisy the units are that you use with maybe the decibel number of the models you have. Do they vent to the outside or do you have to empty water from them? I would imagine one that blows out the front would be better for directing at the feet.
Wouldn't it be great if just for once things that helped us didn't come with side effects? Take this or that for the pain but have some swelling to go with it - stay cool but have a loud noise to distract your thoughts or cracked sore skin to remind you of your troubles.
How are your feet healing? I hope they are looking (and feeling) better than your last set of photographs. Doesn't it take ages for the smallest injury to heal?
I'd be interested to know if the prednisone treatment helped you.
Best wishes,
Tilly
Jim Weed Alaska said:
I use AC all the time and live in Alaska. Even the quiet AC units are loud. My EM is almost continuous so my AC is almost continuous. I have one unit in the bedroom and another in the living room. I like the kind that blow out the front and NOT out the top. I like the 12,000 BTU or larger units. I use the AC directly on the bottom of the feet. I don't now how I would survive without the AC. I even take it to the doctor's office when it is 50 below. I would be glad to answer any specific questions you might have. Jim
Glad you enjoyed your night out. I use the gel packs too every Monday when I go out and I find it works quite well. Mine sit on top of freezer blocks to keep them cool for longer but I use a cloth over the top of both to protect my feet. I did try freezing plastic bottles of water once - milk container kind- but one split which was caused a bit of a dilemma! Get a few odd looks, but I don't care anymore.
Hope you are having a good weekend too and that you get more nice evenings out. I shall be watching some of our Queen's Diamond Jubilee pageant today on the TV. Shame the sun isn't shining but the rain has stopped and we can only hope it stays dry. Thanks again for your help.
Jim Weed Alaska said:
Tilly,
I am sure your husband is lots smarter than me on this subject. I am an engineer but not that kind. Alaska is about the same as you during the summer. Winter is something else.
I do cream my feet at least once a day. That is my protection.
I did a first this evening. I went into and sat down and ate in a restaurant. Also took a cooler with plenty of gel packs and one cold water pack. I did not flare in there but my heal started to go off before I got home. But all in all, it was a successful evening. The gel packs and the cold water pack work quite well. I use the cold water pack on top of the frozen gel packs. I have a fear of freezing my feet without the water pack. Everyone, have a great week end. Jim
tillyp said:Hello again Jim, My husband is in the plumbing and heating line and understands about heat pumps etc. He doesn't get much call for installation of full A/C as our climate is geared more to the heating side of things. I will get him to check out some portable units for me. from people who will know more about them.
Sorry you had to put your Oregon trip on hold for a while.
I have read about making sure that creams have urea in but once again it's horses for courses. I found a cream that works for me and you have one that works for you. Please just tell me you don't have your feet pressed up against the A/C without some protection on your bare skin.
Tilly,
Not sure of the decibel level of my AC unit. 51 decibels. For AC units that is quiet, but believe me. That is loud. I pasted a picture of my unit below, but don’t know if it will made it through this system. Most of these portable (mine included) come with a window vent kit so you can vent these through a screen window. They put out lots of heat and I keep that heat inside all winter. Now I am venting outside. I have such dry air that I do not manufacturer water. If you live in a humid environment you will have to empty the water. I have a bench at a correct height so I place my leg on the bench and that is the correct height for the bottom of my feet to be up against the fins of the AC. I spend hour after hour in that position.
The feet are healing but very slow. They will heal. The bottom of the feet heal even slower than the side or top.
Prednasone……I have had “betterment” (Is that a word?). I believe to receive the most from Prednasone it must be received within 7 months of receiving EM. If that is the case there is a high chance of remission. I did the Prednasone almost 2 years after the beginning of EM. Now I do have an hour or more most afternoons when my feet are not flaring. Some days it is most of the morning and all afternoon. However I am not sure if it will hold. One day at a time. Jim
4.5 Star Rating: Good
228 reviews
- 425 sq. ft. coverage area
- 12,000 BTUs
- Our #1 Selling Portable AC
Price:
$429.00
NewAir AC-12000E Portable Air Conditioner
tillyp said:Hello Jim, thanks for your reply.
I'd be interested in how noisy the units are that you use with maybe the decibel number of the models you have. Do they vent to the outside or do you have to empty water from them? I would imagine one that blows out the front would be better for directing at the feet.
Wouldn't it be great if just for once things that helped us didn't come with side effects? Take this or that for the pain but have some swelling to go with it - stay cool but have a loud noise to distract your thoughts or cracked sore skin to remind you of your troubles.
How are your feet healing? I hope they are looking (and feeling) better than your last set of photographs. Doesn't it take ages for the smallest injury to heal?
I'd be interested to know if the prednisone treatment helped you.
Best wishes,
Tilly
Jim Weed Alaska said:
I use AC all the time and live in Alaska. Even the quiet AC units are loud. My EM is almost continuous so my AC is almost continuous. I have one unit in the bedroom and another in the living room. I like the kind that blow out the front and NOT out the top. I like the 12,000 BTU or larger units. I use the AC directly on the bottom of the feet. I don't now how I would survive without the AC. I even take it to the doctor's office when it is 50 below. I would be glad to answer any specific questions you might have. Jim
Thanks Tilly! are the gel packs you use the kind that physio sites have - that are usually used for icing? I hadn't thought of just putting one in the fridge, will try that.
Sounds like you have gone through a lot to get your current coping strategies. Do you find stress makes EM worse? Mine seems to react worse whenever I'm very stressed.
Frances
tillyp said:
Hello Frances,
Glad your GP is being so helpful in referring you to London. Going straight to someone who knows about EM is great as it can sometimes take a long time to get to that stage. Bit of a journey for you but should be worth it. Hope you don't have to wait too long.
My EM is reasonably ok just now after going through some really miserable months. I learned the hard way about cold water,ice etc and suffered for it. Any lesions caused using these methods can take forever to heal. I'm still treating a small ulcer from before Christmas. Occasionally if I get a really full on flare then I put my feet in thin plastic bags and put them in water from the cold tap. Just squash the air out from round your feet. It works well for me, but I don't do it very often. Using a fan is fine but it caused me windburn from having it too close which cracked the skin and took ages to get better. Now I don't have the fan too close. I use a thick moisturiser (Vaseline intensive rescue moisture locking cream) at least twice a day. Night time I slap on a thick layer to my feet and put on thin cotton socks before going to bed. The fan is on all night blowing from 2-3feet away. The cream is cooled by the fan and that in turn keeps my feet cool enough for me to get to sleep (fingers crossed of course). I also spend a lot of time standing on the cold tiles in my utility room. I find standing better than sitting/lying with my feet in the air when my feet are playing up. Other people can't bear to stand.
For your knees I would maybe use some cold gel packs (not freezer blocks), protecting your skin again with some moisturiser and a tea towel between the skin and the gel pack. The gel packs are malleable to enable them to mould round your knee a bit. I have a supply of them in the fridge and take them with me if I am going out anywhere I can sit down. I wrap them in a thin cloth along with frozen freezer blocks to help keep them cooler for longer. Don't care what people think.
Have you read the replies to 'what are your top 3 ways of dealing with flare ups' posted by Scanfield?
As to freaking out, I think we have all been there, not knowing how to cope with this cruel complaint. You are among friends here and we all totally understand where you are coming from. It might be hard trying to explain the condition to those who have never seen/heard of /or experienced it. You won't have that problem here.
Hope you have a comfortable day
Tilly
FrancesE said:
tillyp said:Hello Frances, Nice to see another Brit here although a shame you had to join because you have EM if you know what I mean.
I was diagnosed by a rheumatologist after asking for a referral. My G P had never heard of the complaint so I had to educate him a bit. I found on here that several people had been diagnosed this way. Others have diagnosis via a neurologist. I think they are the most common ways.I see you have osteoarthritis which I believe is something a rheumatologist would deal with. Is that how you got the diagnosis for the osteoarthritis? If so a referral back there might be the next step. At the very least you could ask your GP to refer you. If possible take EM information with you. A good site other than this one is The Erythromelalgia Association (TEA), it has lots of good research material. A small fee to join if you want access to all areas but lots to read up on there.
There are two London hospitals with specialists in EM. They are Kings College Hospital (Chris Denton) and the Royal Free Hospital (Dave Bennett). Lauraflora (moderator on here) has recently had a couple of trips to Kings College may be able to help. A bit of a journey from where you are but I have no knowledge of what is available in your neck of the woods. Perhaps a letter or call to one or other of the hospitals above could point you in the right direction.
Starsmurf (another Moderator) is very knowledgeable and might be able to point you in the right direction.
Depending on how my EM progresses I can be referred to the Royal Free since seeing the rheumatologist at my local hospital. I haven't got to that point yet. My EM is apparently primary (no underlying cause).
I hope some of the above is helpful, others on here know so much more than me so maybe posting a discussion asking questions will give you better answers than mine.
Hope you find the answers you want.
Tilly
FrancesE said:
Hi Tilly, I just joined the website and I am in Britain too. I haven't found a specialist to consult/get help from yet although my GP has been great. Do you know of any experts in the UK? I'm in the Southwest.
Frances
Hi Tilly thanks! I had tracked down the name of Chris Denton and in fact my GP says she can refer me to him - at the Royal Free, she thinks - so that's encouraging. I did see a rheumatologist here, who diagnosed the OA, but he'd no idea what was going on with all the heat flares, so I'd rather given up on local docs. If I get a diagnosis/some treatment ideas in London I can at least return to Devon armed with that - as it is, I'm afraid people think I'm just crazy!
Have you found anything that helps? I've been reading some posts here and just realised I shouldn't be icing my knee, or even dribbling cold water on it (which has been my mainstay) so am slightly freaking out about how to control the flares! Also feeling a bit panicked about the future....
Hi, my company did research to find the smallest and best air conditioner that they could install for me at work. No flare ups with this AC. There is no drip pan and it has amazing cooling power. Bonus is a remote control. It has a vent for the heat to escape. I was amazed - it was quieter than the fan I was using! Here is the fan: http://www.amazon.com/Whynter-SNO-13000-Portable-Conditioner/dp/B0054NGYLW