@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
@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
Liked by lorirenee1, sunnyflower
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
Thank you so much. Believe it or not, that is the One doctor I have not seen. When I get up the energy to pursue a new dr. That will be the one. In the back of my mine I’ve thought about that trip and picking up something. Again, thank you.
Liked by Hank, sunnyflower
I was an analyst in my past life, and love gathering information. I have spreadsheets on everything, medications, side effects, diet, and the list goes on. Not very exciting 😁. I am definitely going to try what your wife uses for her feet at night. I too have PN. You sound very supportive with all the research you do with your wife. It does take two.
Liked by Hank
Thank you John for the links. I’ve actually read these. With being housebound a-lot of the time I read and read and research some more. Even though I’m in Houston, MN would be an opinion for me.
Liked by John, Volunteer Mentor
Wow, I can't believe it, I'm so glad I mentioned it. I used to watch this show called, "Monsters Inside Me". It was very good and very interesting and I think pretty legitimate. If you get a chance to see it you can probably find it somewhere because I don't think it's currently running live. But there were a like a million episodes. I watched it over the years and there was a lot of science behind it it seemed.
Since it take so long to get in to see a doctor nowadays with Covid-19 and lower staff, it would seem wise for you to get your primary care doctor to write a referral and ask if she/he can write it for urgent because of the amount of problems you are having. And then I would stay on top of everything and maybe once a week call the Infectious Disease practice to see if they received your referral yet. Often times for me they will say no and then I will ask them if they can check on it for me with my primary insurance. I also look to see who is a preferred provider and then I look at their bios. I look at where they went to school and especially how long they have been in practice. I tried to find the one who has been in practice the longest and has some good reviews. Have that name address and fax number ready so that when you send a message to your primary care doctor asking for the referrals, include the infectious disease provider's name address phone and fax number and that will make it much easier and expedite the process. If for some reason the infectious disease provider you select does not appear on the referral you can still ask for that provider when you speak to the practice.
I wish you all the best, Sunnyflower
Liked by lorirenee1, Hank, runwthme
@sunnyflower
Wow, Sunny, it's impressive to hear from a pro who knows the real score when it comes to working the system. You've definitely been around the block more than once. You should write a book! Best, Hank
Liked by lorirenee1, sunnyflower
@sunnyflower I just finished watching an episode of Monsters Inside Me! It’s on one of our Time Warner/Spectrum cable channels. They are so interesting
Liked by lorirenee1, sunnyflower
LOL!! Well I worked in healthcare for over 20 years but tragically being a patient myself, I have learned that patients must advocate for themselves. It's just a matter of understanding how the system works. Take care, Sunny flower
Liked by lorirenee1, Hank
I was just directed to this site as I am new to Mayo Connect. I was diagnosed with erythromelalgia in 2018. It started in 2017, it then became dormant the fall of 2018, but surfaced again this past November 2020 and I have had flare since then. I have not resorted to medications other than aspirin, a topical cream and ice pack but may be looking into other medications after I give it another few months to see if it gets under control again. This still all new to me! I am 74. I have read a lot of comments on erythromelalgia and understand my pain and flare is not as bad as many people face but it is still there. Have any of you had your EM go dormant for awhile? I had that happen before but it has returned after 2.5 years and I met with my doctor to discuss. He is a new doctor to me and had not seen my flare up before. He said he could put me on some medications but so far I've been trying to handle like I did before and had it go dormant. I don't know if I'll be so lucky to have that happen again. The only other meds I'm on are Losartan (100mg) and Simvistatin (20mg).
@jlander, Glad you found this discussion and posted so that you can meet other members like @runwthme, @txbren, @jcmoffatt, @hotfooted, @emfm4me and other members who may be able to offer some suggestions. You might also find the following resources helpful:
– National Organization for Rare Disorders – Erythromelalgia: https://rarediseases.org/rare-diseases/erythromelalgia/
– Erythromelalgia Clinic in Minnesota – Overview: https://www.mayoclinic.org/departments-centers/erythromelalgia-clinic-in-minnesota/overview/ovc-20421220
Liked by Erika, Connect Moderator
@runwthme
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. 😉.