Anyone out there with Erythromelalgia?

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

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

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 😉

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

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?

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.😉

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 😉

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.😉

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...

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.😉