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Anyone out there with Erythromelalgia?

Posted by txbren @txbren, Aug 27, 2018

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

Interested in more discussions like this? Go to the Autoimmune Diseases Support Group.

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hotfooted | @hotfooted | 5 days ago
In reply to @johnbishop "Hello @hotfooted -- Thanks for the private message. Your question "why is there no specific Group..." + (show)
Profile picture for John, Volunteer Mentor @johnbishop

Hello @hotfooted -- Thanks for the private message. Your question "why is there no specific Group Category for Erythromelalgia? I know Mayo Clinic has doctors and treatments for this condition, so I am puzzled" is similar to questions others might have been thinking so I wanted to address it here.

There is discussion on Connect for Erythromelalgia that I think you are familiar with which is the discussion that I am posting your question in here:
> Groups > Autoimmune Diseases > Erythromelalgia
-- https://connect.mayoclinic.org/discussion/erythromelalgia/

I'm tagging Colleen @colleenyoung our director in case she wants to add any thoughts or corrections. New groups are added to Connect based on activity and need. Since I joined in 2016 Connect has made a lot of significant improvements and added groups and discussions as the need arises.

As you mentioned in your question, Mayo Clinic has doctors and treatments for the condition. Our moderator @kanaazpereira shared a good description that talks about what Mayo Clinic offers earlier in this discussion. Here is a link to Kanaaz's post: https://connect.mayoclinic.org/discussion/erythromelalgia/

I would also like to mention a feature on Connect that most members probably are not familiar with - the search function. There is a good discussion on how to use search to find conditions, discussions and more here:

> Groups > Just Want to Talk > Search - It can help you!
-- https://connect.mayoclinic.org/discussion/search-it-can-help-you/

John

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@johnbishop Hello again John.. I have not been online with you for a few years.. but am now back with my "progress (or lack of) report"..I am still troubled with hot burning feet sometimes during the night.. but it is now neuropathy with numbness..My doctor at that time diagnosed me with diabetes and prescribed Metformin, which I still take daily.. My AC1 has never been over 6 since that time! After all this time, I don't believe I ever had diabetes..
In reading about causes of neuropathy I across a reference to Charcot Marie Tooth syndrome as a gene mutation that does cause neuropathy.. I hope you can m

AAAAJOHN.. i GIVE UP.... MY LEFT HQND ON'T BEHve noeYAS...
JUS TOSS GHIS PLEASEEEEEEEE..........
HOTFOOTF

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Mentor
John, Volunteer Mentor | @johnbishop | 5 days ago
In reply to @hotfooted "@johnbishop Hello again John.. I have not been online with you for a few years.. but..." + (show)
Profile picture for hotfooted @hotfooted

@johnbishop Hello again John.. I have not been online with you for a few years.. but am now back with my "progress (or lack of) report"..I am still troubled with hot burning feet sometimes during the night.. but it is now neuropathy with numbness..My doctor at that time diagnosed me with diabetes and prescribed Metformin, which I still take daily.. My AC1 has never been over 6 since that time! After all this time, I don't believe I ever had diabetes..
In reading about causes of neuropathy I across a reference to Charcot Marie Tooth syndrome as a gene mutation that does cause neuropathy.. I hope you can m

AAAAJOHN.. i GIVE UP.... MY LEFT HQND ON'T BEHve noeYAS...
JUS TOSS GHIS PLEASEEEEEEEE..........
HOTFOOTF

Jump to this post

Hello @hotfooted, It is good to hear from you. So sorry to hear that you are now having painful symptoms with your left hand. There are quite a few members who have posted about Charcot Marie Tooth syndrome if you want to read what others have shared - https://connect.mayoclinic.org/search/. I did see a YouTube video on CMT Exercise Series, Part 6: Hands & Fingers: https://www.youtube.com/watch. I think the one thing that can help us get through the tough days are just to keep moving. I'm reminded of that old saying "motion is lotion". Hoping you have a pain free day.

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