Erythromelalgia

Posted by txbren @txbren, Aug 27, 2018

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

@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

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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

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@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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@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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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

Liked by lioness, Hank

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@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

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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

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@jesfactsmon

@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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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

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@johnbishop

@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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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.

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@runwthme

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.

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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

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@sunnyflower

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

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@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

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@sunnyflower

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

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@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

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@jesfactsmon

@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

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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

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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).

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@jlander

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).

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@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

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Thank you again for new sources.

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@txbren

My hands sting and burn in heat, but my feet are th worse. I have been diagnosed since April 2018 with Erythromelalgia, and also Peripheral Neuropathy. I am taking Gabapentin and CBD oil, but nothing but “cold” helps!

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I know. I stand in the bathtub in cold water for a few minutes. Only thing that helps .

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