Good afternoon from KY!! My name is Chris(tine) and i have been suffering with EM for about six years now. In October of 2017 my husband lost his job in Memphis TN and we were forced to consider relocation. Due to my condition, anything south of Tennessee was off the table for me. This has been a very difficult year as my husband and I (empty nesters; married 32 years) have left our parents, sibs, kids, and grands back home. Now our daughter and several other family members are seriously considering a move to Florida (Jacksonville specifically)
I heart is desperate to go, but I’m not sure my feet will allow it. Part of me feels like Jacksonville would be good because of the Mayo pain clinic that is there. My Mayo doc referred me there and I just haven’t made the trip.
Can I LIVE in a warm climate? What kind of coping mechanisms could I expect to use?? Am i crazy for even considering the idea?? KY has been cooler than TN, but colder has its own probs… no shoes, skin issues, cold cold feet I can’t warm without triggering, etc. But, seriously… FLORIDA??
I think it depends on the severity of symptoms. Some questions to think about:
What has your experience been like during summer months in KY and TN? Do you stay indoors?
Do you flare automatically if the air temperature exceeds a certain threshold?
What is your tolerance for heat? Are you able to take warm baths or showers?
Have any medications been successful in decreasing symptoms? Could you increase their dosage?
My symptoms are not really seasonal but they are definitely worse when I get overheated. I am able to shower but I have to do pedicures (necessary because of my always bare feet) with cool water and even then it’s horrible to have them touched and handled.
I have made an appt with the only doc in my new home who is listed on the link for suggestions hoping to redirect my meds again. I have some other auto immune issues and my experience is that if something works it is only likely to work for a period of time and then I need to shift to something new. The cymbalta doesn’t work as well as it used to but heaven forbid I try to step off of it. The ketamine cream that mayo prescribed really isn’t very effective and it’s expensive. Pain meds (opioids) and helpful but doctors are always sceptical about offering them anymore and frankly they help my other pain issues but I don’t notice much relief with my feet or hands. At this point I think if I could just get something to help tip the scales at night on the sleepy/pain that would be something.
You could tell your doctor you are considering moving to Jacksonville and would like to try more treatment approaches in an attempt to better control symptoms. An article was published last August in the Journal of Pain Research that reviewed pain management strategies for patients with erythromelalgia. The article goes through the different pharmacological approaches that have been tried. I would ask your physician to review it and come up with a a treatment strategy.
The text of that article is here: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6121769/
If you’d prefer a PDF of the journal, that can be downloaded here: https://www.dovepress.com/current-pain-management-strategies-for-patients-with-erythromelalgia-a-peer-reviewed-article-JPR