Erythromelalgia

Posted by txbren @txbren, Aug 27, 2018

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

@runwthme

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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@runwthme
I am sorry to hear about this disaster. Especially with all that you are dealing with in terms of your health issues.

Regarding those, you had said this all hit you overnight. So you went from a person without any serious health issues to one with a significant set of them. That is so strange. Any idea why? I mean were there any unusual things which had happened to you physically before this happened? Can you remember any possible exposure to toxins, either thru breathing or in food, drink, etc.? Did you have any recent surgeries? Recent shots, innoculations? Do you live near anything unusual, electric power lines, microwave transmitters, anything else out of the ordinary? I am sure you must have been asked all this before so forgive me if this is old ground. Just looking for some sort of reference point. Seems unfathomable for all of this to hit you at once out of the blue.

I hope you can develop some sense of stability around you as you go through this huge ordeal. I don't want to get you into trouble and I am not familiar with Texas laws, but if you are comfortable and it is available, you may want to consider either medical marijuana and/or kratom, to help you deal with the pain until you are able to transition back home. You need something to help even the keel for you in this stressful moment of you life.

All my best to you, 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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Good morning, @runwthme , You sound just like I did 3 years ago. Overnight, my whole life changed. The local doctors weren’t helpful at all. I was finally hospitalized because I was in bad shape. The doctors did an MRI. of my brain but couldn’t tell what they were
wlooking at. My husband said enough is enough and got an appointment with a neurologiy-inflammatory doctor and I’ve been going there ever since. To be sure, it has t been a bed of roses, but they know what they’re talking about.
So, to make a long story shorter, you want to find an experienced rheumatologist or just go to a large medical center or university medical center. Write down everything that happened, a timeline, whatever you can think of and take it with you. I wish you a lot of luck and all the best. ADVOCATE for yourself! Be sure to let me know what happens-will you? Becky

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@runwthme

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.😉

Jump to this post

Dear runwthme, I am so sorry to hear about your flood! I hope and will pray for zero body symptoms while dead with this extra stress. Don't forget to take good care of yourself! Warmest wishes, Sunnyflower 🙏😊

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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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Dearest hotfooted, my heart aches for what you are going through. I am very grateful that you have a husband like he is. I do too. It's rare! I know what anxiety feels like and it's horrible! I also am way too familiar with what it feels like to be weepy. I will uphold you in prayer and ask God to comfort and encourage you and give you His peace through Christ which surpasses human understanding. That's what works for me gets me through the many fires we walk through in our lives. Many blessings, Sunnyflower

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@runwthme

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.😉

Jump to this post

Hi,
Read your post, and feel bad you have health issues, and now dealing with a flood.
being a survivor of the Wolsey canyon fire, I can understand what you are going thru.
Most important call insurance company, take a lot of pictures, and insist you get new wallboard/baseboards, as moisture gets trapped inside of walls and then mold starts.
If your furniture is ruined get outside quickly, as water can and will penetrate the wood, fabric,etc., and cause allergies from the chemicals used to stain wood, and also today’s fabrics have protective chemicals. I could write a book on what to expect when dealing with insurance companies.
Most important let them know you have health issues, so they refrain from their pressure tactics.
With a house flood, I doubt you will be back home in 30 days.
Maybe rent a home/apartment is a better choice.
Wish you well, and try not to stress, I know easier said then done.
Funcountess

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@sunnyflower

Dear runwthme, I am so sorry to hear about your flood! I hope and will pray for zero body symptoms while dead with this extra stress. Don't forget to take good care of yourself! Warmest wishes, Sunnyflower 🙏😊

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Thank you ☺️

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@jesfactsmon

@runwthme
I am sorry to hear about this disaster. Especially with all that you are dealing with in terms of your health issues.

Regarding those, you had said this all hit you overnight. So you went from a person without any serious health issues to one with a significant set of them. That is so strange. Any idea why? I mean were there any unusual things which had happened to you physically before this happened? Can you remember any possible exposure to toxins, either thru breathing or in food, drink, etc.? Did you have any recent surgeries? Recent shots, innoculations? Do you live near anything unusual, electric power lines, microwave transmitters, anything else out of the ordinary? I am sure you must have been asked all this before so forgive me if this is old ground. Just looking for some sort of reference point. Seems unfathomable for all of this to hit you at once out of the blue.

I hope you can develop some sense of stability around you as you go through this huge ordeal. I don't want to get you into trouble and I am not familiar with Texas laws, but if you are comfortable and it is available, you may want to consider either medical marijuana and/or kratom, to help you deal with the pain until you are able to transition back home. You need something to help even the keel for you in this stressful moment of you life.

All my best to you, Hank

Jump to this post

I went from running marathons,hence runwthme, to one day waking up to severe gerd. And from there upper stomach pain, sore joints, swollen feet, etc, etc. it all has been explained as idiopathic. Some say most likely a virus. The only thing we can think of is several months before, we took a 2 week trip to Alaska. I ate so much king crab I haven’t had any since.😉 I’ve had so many blood tests quest has more of my blood then me. Included metal toxins, etc. including antifreeze. Haha, my husband laughed at that one. These groups have definitely helped as there seems to be a lot of ppl with illnesses that can’t be explained. I use to be an analyst, so at the beginning I logged every little detail and just had to figure out what was happening. I have given up on that quest for now. I see a pain specialist (the most difficult ordeal) and really like him. I’ve read a lot about kratom, and makes me nervous thinking about taking it. Most of my Drs are in the medical center in Houston, but still a matter of finding the right fit. I don’t think Texas will ever allow medical marijuana, in my opinion. Believe me, I have explored every type of explanation for this because it just seems impossible, so many rare conditions. Thank you for your reply and I’m certainly open to hear any ideas….jeanine

REPLY
@funcountess

Hi,
Read your post, and feel bad you have health issues, and now dealing with a flood.
being a survivor of the Wolsey canyon fire, I can understand what you are going thru.
Most important call insurance company, take a lot of pictures, and insist you get new wallboard/baseboards, as moisture gets trapped inside of walls and then mold starts.
If your furniture is ruined get outside quickly, as water can and will penetrate the wood, fabric,etc., and cause allergies from the chemicals used to stain wood, and also today’s fabrics have protective chemicals. I could write a book on what to expect when dealing with insurance companies.
Most important let them know you have health issues, so they refrain from their pressure tactics.
With a house flood, I doubt you will be back home in 30 days.
Maybe rent a home/apartment is a better choice.
Wish you well, and try not to stress, I know easier said then done.
Funcountess

Jump to this post

Thank you for your suggestions. The house is dried out now, after using those huge fans and dehumidifiers. It’s a new built home so insulation very good and drying was very successful. Met w movers yesterday as everything needs to be packed and stored while work is being done. Housing is a bit difficult to find because of last few hurricanes as ppl have been displaced so nothing Available. We did get switched to a tiny 1 bedroom and that helps. So far, (knock on wood) insurance is going very well. I’m just taking it day by day, trying not to stress too much. There is nothing like your own bed when you are not feeling well, right? Again, thank you.. jeanine

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@sunnyflower

Dear runwthme, I am so sorry to hear about your flood! I hope and will pray for zero body symptoms while dead with this extra stress. Don't forget to take good care of yourself! Warmest wishes, Sunnyflower 🙏😊

Jump to this post

Thank you so much ☺️

REPLY
@becsbuddy

Good morning, @runwthme , You sound just like I did 3 years ago. Overnight, my whole life changed. The local doctors weren’t helpful at all. I was finally hospitalized because I was in bad shape. The doctors did an MRI. of my brain but couldn’t tell what they were
wlooking at. My husband said enough is enough and got an appointment with a neurologiy-inflammatory doctor and I’ve been going there ever since. To be sure, it has t been a bed of roses, but they know what they’re talking about.
So, to make a long story shorter, you want to find an experienced rheumatologist or just go to a large medical center or university medical center. Write down everything that happened, a timeline, whatever you can think of and take it with you. I wish you a lot of luck and all the best. ADVOCATE for yourself! Be sure to let me know what happens-will you? Becky

Jump to this post

Thank you for your reply. I was taking so many notes and explained to my doctors they would get this look on their face🤯 and not know how to address. I’ve switched Drs so many times and realized it’s worth doing that until you find the dr you like. Yes, I also learned I must advocate for myself. That I had to learn. Interesting you started the same way, overnight. Crazy right? I always think I just need to be “ rebooted” as there is some electrical problem. 😉.

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@runwthme

I went from running marathons,hence runwthme, to one day waking up to severe gerd. And from there upper stomach pain, sore joints, swollen feet, etc, etc. it all has been explained as idiopathic. Some say most likely a virus. The only thing we can think of is several months before, we took a 2 week trip to Alaska. I ate so much king crab I haven’t had any since.😉 I’ve had so many blood tests quest has more of my blood then me. Included metal toxins, etc. including antifreeze. Haha, my husband laughed at that one. These groups have definitely helped as there seems to be a lot of ppl with illnesses that can’t be explained. I use to be an analyst, so at the beginning I logged every little detail and just had to figure out what was happening. I have given up on that quest for now. I see a pain specialist (the most difficult ordeal) and really like him. I’ve read a lot about kratom, and makes me nervous thinking about taking it. Most of my Drs are in the medical center in Houston, but still a matter of finding the right fit. I don’t think Texas will ever allow medical marijuana, in my opinion. Believe me, I have explored every type of explanation for this because it just seems impossible, so many rare conditions. Thank you for your reply and I’m certainly open to hear any ideas….jeanine

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@runwthme – I ran across this older report from 2007 that I'm wondering if you have seen or heard about – Mayo Doctors Report New Treatment, Study Findings (PDF): https://erythromelalgia.org/wp-content/uploads/2017/09/FootStep3.07-1-1.pdf

Mayo Clinic Rochester also has a care clinic for Erythromelalgia if that might be an option – Erythromelalgia Clinic in Minnesota: https://www.mayoclinic.org/departments-centers/erythromelalgia-clinic-in-minnesota/overview/ovc-20421220

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@runwthme

I went from running marathons,hence runwthme, to one day waking up to severe gerd. And from there upper stomach pain, sore joints, swollen feet, etc, etc. it all has been explained as idiopathic. Some say most likely a virus. The only thing we can think of is several months before, we took a 2 week trip to Alaska. I ate so much king crab I haven’t had any since.😉 I’ve had so many blood tests quest has more of my blood then me. Included metal toxins, etc. including antifreeze. Haha, my husband laughed at that one. These groups have definitely helped as there seems to be a lot of ppl with illnesses that can’t be explained. I use to be an analyst, so at the beginning I logged every little detail and just had to figure out what was happening. I have given up on that quest for now. I see a pain specialist (the most difficult ordeal) and really like him. I’ve read a lot about kratom, and makes me nervous thinking about taking it. Most of my Drs are in the medical center in Houston, but still a matter of finding the right fit. I don’t think Texas will ever allow medical marijuana, in my opinion. Believe me, I have explored every type of explanation for this because it just seems impossible, so many rare conditions. Thank you for your reply and I’m certainly open to hear any ideas….jeanine

Jump to this post

@runwthme
Hi Jeanine, it appears that king crab is among the lowest in mercury of all seafood, even among all types of crab, so it's probably not from that. As you are being prescribed more and more drugs to treat pain and other symptoms, I'd suggest being extra careful to read all the info you can about each drug, be familiar with all side effects so if you get new symptoms you might be able to tie them to a prescription. It's great you are so open to continuing to seek the right doctors for you personally. Obviously a bad doctor is way worse than no doctor, and a good doctor but the wrong chemistry is no good either.

One tip for burning feet/hands: my wife applies Penetrex roll on (available from the company store (aka Amazon)) at night before bed and it usually cuts the burning by about a third. She has PN.

That is great news that your house can be successfully remediated and the moisture can be eliminated. What a shame that this happened to you. Hopefully this will end your streak of bad luck for a while. Hang in there Jeanine! Hank

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