Erythromelalgia

Posted by txbren @txbren, Aug 27, 2018

Are there any patients with erythromelalgia? Have you been successfully treated at Mayo?

@runwthme

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 😉

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@ 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.

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@runwthme

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 😉

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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

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@sunnyflower I can’t believe everything you deal with! You are an inspiration!

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@hotfooted

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..

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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…

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@hotfooted

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…

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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.

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@bustrbrwn22

@sunnyflower I can’t believe everything you deal with! You are an inspiration!

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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

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@sunnyflower I so agree with you Morning prayer Lord give me your strength to get through this day In Jesus name Amen

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@bustrbrwn22

@sunnyflower I can’t believe everything you deal with! You are an inspiration!

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As are you Jen!! 🤗

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@sunnyflower

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

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@sunnyflower God in heaven, how wonderful you are. You are sheer joy! An inspiration to everyone here. Love, Lori Renee

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@runwthme

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 😉

Jump to this post

Hi @runwthme, I thought I'd check in with you and see if you saw the helpful replies from @jesfactsmon @sunnyflower and @hotfooted with their thoughts on seeking medical care. How are you doing today?

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@lorirenee1

@sunnyflower God in heaven, how wonderful you are. You are sheer joy! An inspiration to everyone here. Love, Lori Renee

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Thank you for your kind words Lori Renee! I so pray these things are true of me. I care so deeply for each person in the groups and want so badly to bring to all the comfort and peace of God that gets me through. You contribute a lot yourself and I for one am blessed by you! It's great to know you here my friend! Warm hugs, 🤗. Sunny. ❤️💐

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@colleenyoung

Hi @runwthme, I thought I'd check in with you and see if you saw the helpful replies from @jesfactsmon @sunnyflower and @hotfooted with their thoughts on seeking medical care. How are you doing today?

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Hi, I haven’t been on in awhile. I will scroll thru and look at the replies. Sunday, over night a small clamp came loose under our sink and flooded our whole house( ranch) and every room in the house had water damage. So, we are living in a hotel atm for at least a month. And as we all know stress can produce flares, and is. Thank you so much for checking in, That’s so kind, and for everyone’s response to my first post. I tend to have an “anxious” personality, but thankfully my husband is as calm as it gets.😉

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