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Anyone out there with Erythromelalgia?
Autoimmune Diseases | Last Active: May 12 7:45am | Replies (298)Comment receiving replies
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
Replies to "I went from running marathons,hence runwthme, to one day waking up to severe gerd. And from..."
@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
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
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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