Anyone out there with Erythromelalgia?

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 🙏😊

@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

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

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 🙏😊

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

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

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

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

Hi Jeanine, wow your story grips my heart! The piece about travel to Alaska is a very likely key I feel. Have you seen an Infectious Disease doctor? They would be the ones to know which rare and out-of-the-box parasites and infections, virus is excetera to look for and to test for. I work for 20 years in healthcare and being a patient who has some rare diseases and a ton of specialist, really believe in specialty medicine. I hope and pray you can see infectious disease. They would be the ones to know which bacteria, viruses, parasites are particular to Alaska that are not where you live.

I will uphold you in prayer that you can be officially diagnosed and that, that would help to know what if any treatment could benefit you.

Take Good Care and many blessings, Sunny flower

@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