It's been a while since I've been on here and I thought I'd let you and folks know another recent trick I've discovered to keep my feet cool while I sleep.. The weather has turned a bit cooler here in Oregon lately and I've been needing my heating mattress pad on, but then I have the problem of my feet getting too hot and flaring during the night.. Not good!! That's been keeping me awake a few hours every night.. Well, I went to the fabric store and bought 1 yard of thermal barrier quilted fabric like used on ironing boards.. Now that protects my feet from the heat and I can sleep all night.. I do have to sleep in socks and that keeps me comfortable.. On really cool nights I wear my husbands Wigwam wool socks to bed.. His socks are big and loose and that feels better too.. I hope this tip helps someone else get a good night's sleep, too...
Hi @hotfooted , that is a very apropos Connect name! My wife has incredibly hot feet as well. She actually sleeps with her feet uncovered and sticking out the end of the bed. And it's so strange because when we were married she hated cold feet and was always putting them right against my legs all night to keep them warm. I usually didn't mind as I was always too hot anyway. But what a difference a little neuropathy makes! She now has a fan blowing on them 24/7. I'm sure your idea of the thermal fabric will sound useful to someone else though. Glad to have you back, since you say you have been off Connect for a while. Nice to hear from you. Best, Hank
Hi @runwthme and welcome to Mayo Clinic Connect. I have moved your message to this existing discussion about Erythromelalgia in the Autoimmune Diseases and Neuropathy groups. Here you can connect with other members talking about Erythromelalgia like @txbren@jcmoffatt@summershaddow@hotfooted@emfm4me and others. If you click VIEW & REPLY in the email notification, it will bring you to the discussion and you can scroll through past posts.
Runwthme, what symptoms does erythromelalgia cause you? How do you manage them now?
Thanks for moving this post. I’m still trying to figure out this site. Symptoms started 3 years ago with feet just swelling really bad. My body temp then became so over heated ( I live in Houston) I must have had my thyroid tested every month. Then my hands became swollen and red. Then, neuropathy in hands and feet. Last December I had the worst flare w/ my feet. I couldn’t stand, they swelled, hot and so painful. Mind you, nobody knew what was going on. That lasted 3 months, subsided, and from there on, my face is so inflamed, nearly every day, all day. That causes my dry eyes, migraines and other flares. Backing up 3 years, I was diagnosed w/ gastroparesis, achalasia, undifferentiated connective tissue disease, and finally Erythromelalgia. Nobody I see, including neurologist, motility, podiatrist, dermatologists, rheumatologist and Pain specialist know how to treat. Literally, this all hit overnight and explained as idiopathic. I keep my house at about 65 during the day. If I get myself “chilled” flares start to calm. What is crazy is my hands will become white and cold as ice, yet I will be sweating and miserable. I’m taking plaquenil and has helped w/ joints and typical autoimmune symptoms. I’ve been taking aspirin every day, I have also stared magnesium supplements , rx creams, And stomach spores supplements To “heal the gut”. The concern is I need a dr to help monitor what I’m doing for this. Seriously, I live in Houston, one of the best places to be in the medical community and I can’t figure out who to see. Believe me, it took almost a year to figure out there are “motility experts”. I certainly have considered a mayo clinic but after I read how awful this condition is/ can be I think, mine is nothing compared to sores or a wheelchair. Do I seek treatment, Opinions now? Before or Incase it progresses? Or wait? My mind is near exploding. Seriously, what are the chances of all these rare conditions? I should buy some lottery tickets 😉
Thanks for moving this post. I’m still trying to figure out this site. Symptoms started 3 years ago with feet just swelling really bad. My body temp then became so over heated ( I live in Houston) I must have had my thyroid tested every month. Then my hands became swollen and red. Then, neuropathy in hands and feet. Last December I had the worst flare w/ my feet. I couldn’t stand, they swelled, hot and so painful. Mind you, nobody knew what was going on. That lasted 3 months, subsided, and from there on, my face is so inflamed, nearly every day, all day. That causes my dry eyes, migraines and other flares. Backing up 3 years, I was diagnosed w/ gastroparesis, achalasia, undifferentiated connective tissue disease, and finally Erythromelalgia. Nobody I see, including neurologist, motility, podiatrist, dermatologists, rheumatologist and Pain specialist know how to treat. Literally, this all hit overnight and explained as idiopathic. I keep my house at about 65 during the day. If I get myself “chilled” flares start to calm. What is crazy is my hands will become white and cold as ice, yet I will be sweating and miserable. I’m taking plaquenil and has helped w/ joints and typical autoimmune symptoms. I’ve been taking aspirin every day, I have also stared magnesium supplements , rx creams, And stomach spores supplements To “heal the gut”. The concern is I need a dr to help monitor what I’m doing for this. Seriously, I live in Houston, one of the best places to be in the medical community and I can’t figure out who to see. Believe me, it took almost a year to figure out there are “motility experts”. I certainly have considered a mayo clinic but after I read how awful this condition is/ can be I think, mine is nothing compared to sores or a wheelchair. Do I seek treatment, Opinions now? Before or Incase it progresses? Or wait? My mind is near exploding. Seriously, what are the chances of all these rare conditions? I should buy some lottery tickets 😉
@runwthme
I am not familiar with your ailments or conditions. However, my heart goes out to you for all you are enduring. I think you should not wait, but rather be on the hunt now for a GOOD health practitioner, a medical doctor if possible, certainly. But if you can't find anyone in the medical field who can help and understand your situation (and it sounds as if that is the case at the moment), don't automatically rule out alternative health practitioners such as naturopathic, chiropractic, chinese medicine practitioners, or whatever. Be open to what comes you way, but do put your mind toward finding the person who is right for YOU. That is the best way to eventually connect with the right help that you personally need. This forum was a great place for you to come, there are a ton of networking possibilities here.
Others will likely have some more specific ideas for you which might address your conditions. This is just my own feeling as to what you should be doing for yourself, i.e. start now (or I guess more accurately, don't stop) to seek help for yourself. Hope this helps.
Thanks for moving this post. I’m still trying to figure out this site. Symptoms started 3 years ago with feet just swelling really bad. My body temp then became so over heated ( I live in Houston) I must have had my thyroid tested every month. Then my hands became swollen and red. Then, neuropathy in hands and feet. Last December I had the worst flare w/ my feet. I couldn’t stand, they swelled, hot and so painful. Mind you, nobody knew what was going on. That lasted 3 months, subsided, and from there on, my face is so inflamed, nearly every day, all day. That causes my dry eyes, migraines and other flares. Backing up 3 years, I was diagnosed w/ gastroparesis, achalasia, undifferentiated connective tissue disease, and finally Erythromelalgia. Nobody I see, including neurologist, motility, podiatrist, dermatologists, rheumatologist and Pain specialist know how to treat. Literally, this all hit overnight and explained as idiopathic. I keep my house at about 65 during the day. If I get myself “chilled” flares start to calm. What is crazy is my hands will become white and cold as ice, yet I will be sweating and miserable. I’m taking plaquenil and has helped w/ joints and typical autoimmune symptoms. I’ve been taking aspirin every day, I have also stared magnesium supplements , rx creams, And stomach spores supplements To “heal the gut”. The concern is I need a dr to help monitor what I’m doing for this. Seriously, I live in Houston, one of the best places to be in the medical community and I can’t figure out who to see. Believe me, it took almost a year to figure out there are “motility experts”. I certainly have considered a mayo clinic but after I read how awful this condition is/ can be I think, mine is nothing compared to sores or a wheelchair. Do I seek treatment, Opinions now? Before or Incase it progresses? Or wait? My mind is near exploding. Seriously, what are the chances of all these rare conditions? I should buy some lottery tickets 😉
@ runwthme. Wow. That is a lot to deal with! You are suffering enough that you should try to get to Mayo. Many people could not handle everything you are dealing with! Don’t minimize your self worth! I agree with Hank.
Thanks for moving this post. I’m still trying to figure out this site. Symptoms started 3 years ago with feet just swelling really bad. My body temp then became so over heated ( I live in Houston) I must have had my thyroid tested every month. Then my hands became swollen and red. Then, neuropathy in hands and feet. Last December I had the worst flare w/ my feet. I couldn’t stand, they swelled, hot and so painful. Mind you, nobody knew what was going on. That lasted 3 months, subsided, and from there on, my face is so inflamed, nearly every day, all day. That causes my dry eyes, migraines and other flares. Backing up 3 years, I was diagnosed w/ gastroparesis, achalasia, undifferentiated connective tissue disease, and finally Erythromelalgia. Nobody I see, including neurologist, motility, podiatrist, dermatologists, rheumatologist and Pain specialist know how to treat. Literally, this all hit overnight and explained as idiopathic. I keep my house at about 65 during the day. If I get myself “chilled” flares start to calm. What is crazy is my hands will become white and cold as ice, yet I will be sweating and miserable. I’m taking plaquenil and has helped w/ joints and typical autoimmune symptoms. I’ve been taking aspirin every day, I have also stared magnesium supplements , rx creams, And stomach spores supplements To “heal the gut”. The concern is I need a dr to help monitor what I’m doing for this. Seriously, I live in Houston, one of the best places to be in the medical community and I can’t figure out who to see. Believe me, it took almost a year to figure out there are “motility experts”. I certainly have considered a mayo clinic but after I read how awful this condition is/ can be I think, mine is nothing compared to sores or a wheelchair. Do I seek treatment, Opinions now? Before or Incase it progresses? Or wait? My mind is near exploding. Seriously, what are the chances of all these rare conditions? I should buy some lottery tickets 😉
Dear runwthme, I am heavy-hearted to read about your plight. I am so very sorry you are suffereing so. I worked in healthcare for over 20 years and one of the things I've learned is that medicine isn't an exact science rather some science and some art of practice and, everything is a risk/benefit ratio. Bummer huh? I have been told over the years by almost every provider I've seen, that I have either the longest list or one of the longest lists they've seen. One even asked me if they could do a case study on me! I have mixed connective disease and so many diseased organs and glands, neuropathy, severe osteoporosis, aarthritis, and so much more! There are something like 86 autoimmune diseases and most have many of the same symptoms. Have you seen a gastroenterologist for your stomach problems? Is that what you mean when you say, "motility"? Have you seen a vascular and/or hemmatologist doc for your Erythromelalgia? I myself have 3 rare things: innumerable benign lung tumors called "minute diffuse meningotheliomatosis", Nutcracker's esophagus and now a brachial artery stenosis. I will see vascular surgeon to find the cause, most of which are serious such as peripheral artery disease. It's so scary! I will pray and ask God to give you clear direction for what specialist you should see and that you get in to just the right one/s for you asap. Often if you tell them you're in a lot of pain, that can help to get you in sooner. It's alwasy good to bring as many records and diagnostic reports that you can. I'm sure you already know that but just in case. Sometimes the most skilled docs have the worst bedside manner. I hope you get one/s that have both! Keep us posted. We all care very much. Warmest regards, Sunnyflower @colleenyoung
Erythromelalgia is a rare disorder and it's difficult to get a diagnosis.. My feet turn bright red, feel very hot to the touch, and are so very painful when they take off with a flare.. Sometimes though, they are so cold to the touch and I can't get them warm.. It seems that I have a double whammy with Erythromelalgia and Raynaud's, which makes it especially tricky to deal with.. My regimen for the hot burning flareup is to cool by spraying with cool water for a few minutes, then lie down for a while, maybe read or watch tv.. just to get my mind off my pain until it settles down.. Then stay off my feet by sitting with them up.. Also, I use Frankincense and Myrrh rubbing oil on them and that helps ease the pain a lot.. But when they turn all cold, I just need to get them warmed up some but not too warm!! Then I spray with warm water for a few minutes and put on warm wool socks.. Always must keep off my feet as much as possible and keep them up off the floor, either lying down or in a chair with a footstool or recliner.. These are tricks that I've learned over the years and they make my life bearable.. Many folks have EM so much worse than I do.... I'm one of the lucky ones...
I would like to hear from anyone else who is living with Erythromelalgia... Exchange of information and things to try is especially important since this is such a rare health issue..
After reading others experiences with Erythromelalgia and already dealing with it in my feet, I guess this is where I need to post what's happening with me now. I have tried to ignore the possibility of ER moving to other parts of my body.... preferring to think of my problems as neuropathy related. I have not brought any changes up to my doctor, but have been trying to find someone who could do myofascial massage for my feet, legs, hands, and arm pain. Last week we drove over 100 miles to have deep tissue massage for one hour on mainly my extremities. That night I slept so well, altho with many large torso jerks and leg kicks.. Next day I felt wonderful and walked around the house, just enjoyed feeling so great.. but now the numbness and heaviness in my limbs and even my head between my ears feels rather strange.. I'm guessing the queasy tummy is only my anxiety over what might be happening to me now.. I feel weepy, too.. Thank God for my husband.. he's so understanding and helpful.. He suggested that I needed to move more, not on my feet, but pedal on the exercycle.. get on the balance thing on the floor some.. I did pedal 3 miles already... Thank you for any suggestions...
After reading others experiences with Erythromelalgia and already dealing with it in my feet, I guess this is where I need to post what's happening with me now. I have tried to ignore the possibility of ER moving to other parts of my body.... preferring to think of my problems as neuropathy related. I have not brought any changes up to my doctor, but have been trying to find someone who could do myofascial massage for my feet, legs, hands, and arm pain. Last week we drove over 100 miles to have deep tissue massage for one hour on mainly my extremities. That night I slept so well, altho with many large torso jerks and leg kicks.. Next day I felt wonderful and walked around the house, just enjoyed feeling so great.. but now the numbness and heaviness in my limbs and even my head between my ears feels rather strange.. I'm guessing the queasy tummy is only my anxiety over what might be happening to me now.. I feel weepy, too.. Thank God for my husband.. he's so understanding and helpful.. He suggested that I needed to move more, not on my feet, but pedal on the exercycle.. get on the balance thing on the floor some.. I did pedal 3 miles already... Thank you for any suggestions...
That's a promising update, @hotfooted. Moving more sounds like it's working for you. Do you like to swim?
In the meantime, keep pedalling and keep us posted.
Hank, as you well know by now, were it not for my intimate relationship w/ our Lord Jesus, and the medications, I would have never, ever made it this far!!!!! Pain hurts so everyone that has it is in the same place. I have my times (only occasionally every other minute or so-JK), I reach my human threshholds but I am deliberate about keeping my heart/spirit right and not complaining. I am beyond grateful that no matter how hard it gets, and believe me it gets hard, that I am always acutely aware of my innumerable blessings and, still have the peace of Christ which surpasses human understanding. Grateful, Sunnyflower
Connect
Connect
Like
Helpful
Hug
Hi @hotfooted , that is a very apropos Connect name! My wife has incredibly hot feet as well. She actually sleeps with her feet uncovered and sticking out the end of the bed. And it's so strange because when we were married she hated cold feet and was always putting them right against my legs all night to keep them warm. I usually didn't mind as I was always too hot anyway. But what a difference a little neuropathy makes! She now has a fan blowing on them 24/7. I'm sure your idea of the thermal fabric will sound useful to someone else though. Glad to have you back, since you say you have been off Connect for a while. Nice to hear from you. Best, Hank
-
Like -
Helpful -
Hug
2 ReactionsThanks for moving this post. I’m still trying to figure out this site. Symptoms started 3 years ago with feet just swelling really bad. My body temp then became so over heated ( I live in Houston) I must have had my thyroid tested every month. Then my hands became swollen and red. Then, neuropathy in hands and feet. Last December I had the worst flare w/ my feet. I couldn’t stand, they swelled, hot and so painful. Mind you, nobody knew what was going on. That lasted 3 months, subsided, and from there on, my face is so inflamed, nearly every day, all day. That causes my dry eyes, migraines and other flares. Backing up 3 years, I was diagnosed w/ gastroparesis, achalasia, undifferentiated connective tissue disease, and finally Erythromelalgia. Nobody I see, including neurologist, motility, podiatrist, dermatologists, rheumatologist and Pain specialist know how to treat. Literally, this all hit overnight and explained as idiopathic. I keep my house at about 65 during the day. If I get myself “chilled” flares start to calm. What is crazy is my hands will become white and cold as ice, yet I will be sweating and miserable. I’m taking plaquenil and has helped w/ joints and typical autoimmune symptoms. I’ve been taking aspirin every day, I have also stared magnesium supplements , rx creams, And stomach spores supplements To “heal the gut”. The concern is I need a dr to help monitor what I’m doing for this. Seriously, I live in Houston, one of the best places to be in the medical community and I can’t figure out who to see. Believe me, it took almost a year to figure out there are “motility experts”. I certainly have considered a mayo clinic but after I read how awful this condition is/ can be I think, mine is nothing compared to sores or a wheelchair. Do I seek treatment, Opinions now? Before or Incase it progresses? Or wait? My mind is near exploding. Seriously, what are the chances of all these rare conditions? I should buy some lottery tickets 😉
-
Like -
Helpful -
Hug
2 Reactions@runwthme
I am not familiar with your ailments or conditions. However, my heart goes out to you for all you are enduring. I think you should not wait, but rather be on the hunt now for a GOOD health practitioner, a medical doctor if possible, certainly. But if you can't find anyone in the medical field who can help and understand your situation (and it sounds as if that is the case at the moment), don't automatically rule out alternative health practitioners such as naturopathic, chiropractic, chinese medicine practitioners, or whatever. Be open to what comes you way, but do put your mind toward finding the person who is right for YOU. That is the best way to eventually connect with the right help that you personally need. This forum was a great place for you to come, there are a ton of networking possibilities here.
Others will likely have some more specific ideas for you which might address your conditions. This is just my own feeling as to what you should be doing for yourself, i.e. start now (or I guess more accurately, don't stop) to seek help for yourself. Hope this helps.
Best, Hank
-
Like -
Helpful -
Hug
1 Reaction@ runwthme. Wow. That is a lot to deal with! You are suffering enough that you should try to get to Mayo. Many people could not handle everything you are dealing with! Don’t minimize your self worth! I agree with Hank.
-
Like -
Helpful -
Hug
2 ReactionsDear runwthme, I am heavy-hearted to read about your plight. I am so very sorry you are suffereing so. I worked in healthcare for over 20 years and one of the things I've learned is that medicine isn't an exact science rather some science and some art of practice and, everything is a risk/benefit ratio. Bummer huh? I have been told over the years by almost every provider I've seen, that I have either the longest list or one of the longest lists they've seen. One even asked me if they could do a case study on me! I have mixed connective disease and so many diseased organs and glands, neuropathy, severe osteoporosis, aarthritis, and so much more! There are something like 86 autoimmune diseases and most have many of the same symptoms. Have you seen a gastroenterologist for your stomach problems? Is that what you mean when you say, "motility"? Have you seen a vascular and/or hemmatologist doc for your Erythromelalgia? I myself have 3 rare things: innumerable benign lung tumors called "minute diffuse meningotheliomatosis", Nutcracker's esophagus and now a brachial artery stenosis. I will see vascular surgeon to find the cause, most of which are serious such as peripheral artery disease. It's so scary! I will pray and ask God to give you clear direction for what specialist you should see and that you get in to just the right one/s for you asap. Often if you tell them you're in a lot of pain, that can help to get you in sooner. It's alwasy good to bring as many records and diagnostic reports that you can. I'm sure you already know that but just in case. Sometimes the most skilled docs have the worst bedside manner. I hope you get one/s that have both! Keep us posted. We all care very much. Warmest regards, Sunnyflower @colleenyoung
-
Like -
Helpful -
Hug
3 Reactions@sunnyflower I can’t believe everything you deal with! You are an inspiration!
-
Like -
Helpful -
Hug
2 ReactionsAfter reading others experiences with Erythromelalgia and already dealing with it in my feet, I guess this is where I need to post what's happening with me now. I have tried to ignore the possibility of ER moving to other parts of my body.... preferring to think of my problems as neuropathy related. I have not brought any changes up to my doctor, but have been trying to find someone who could do myofascial massage for my feet, legs, hands, and arm pain. Last week we drove over 100 miles to have deep tissue massage for one hour on mainly my extremities. That night I slept so well, altho with many large torso jerks and leg kicks.. Next day I felt wonderful and walked around the house, just enjoyed feeling so great.. but now the numbness and heaviness in my limbs and even my head between my ears feels rather strange.. I'm guessing the queasy tummy is only my anxiety over what might be happening to me now.. I feel weepy, too.. Thank God for my husband.. he's so understanding and helpful.. He suggested that I needed to move more, not on my feet, but pedal on the exercycle.. get on the balance thing on the floor some.. I did pedal 3 miles already... Thank you for any suggestions...
-
Like -
Helpful -
Hug
4 ReactionsThat's a promising update, @hotfooted. Moving more sounds like it's working for you. Do you like to swim?
In the meantime, keep pedalling and keep us posted.
-
Like -
Helpful -
Hug
1 ReactionHank, as you well know by now, were it not for my intimate relationship w/ our Lord Jesus, and the medications, I would have never, ever made it this far!!!!! Pain hurts so everyone that has it is in the same place. I have my times (only occasionally every other minute or so-JK), I reach my human threshholds but I am deliberate about keeping my heart/spirit right and not complaining. I am beyond grateful that no matter how hard it gets, and believe me it gets hard, that I am always acutely aware of my innumerable blessings and, still have the peace of Christ which surpasses human understanding. Grateful, Sunnyflower
-
Like -
Helpful -
Hug
4 Reactions@sunnyflower I so agree with you Morning prayer Lord give me your strength to get through this day In Jesus name Amen
-
Like -
Helpful -
Hug
3 Reactions