Hey,
I’m getting ready to start learning how to drive and I’m nervous about my feet/pain distracting me while I’m driving, causing an accident or something.
I’m a pretty anxious person and the idea of hurting someone else is really scary.
What are y’all’s experiences with driving?
Are there people who can’t drive because of the EM?
I should also mention how mine works since it’s a little different than what I’ve read online. I don’t get individual “flares” exactly. My feet just slowly (or not so slowly depending on circumstances) heat up, the pain keeps getting worse until I cool them off, then they heat up again, I cool again and that’s my life,
Does anyone else’s work that way?
Any thoughts or opinion/experiences would be appreciated.
(This is my first post so I did everything right )
Hi, I’ll start off with saying my EM is exactly like yours, with it gradually heating up and staying like that until I cool them off, the cycle continues. But I still consider it flaring technically.
Driving is not easy for me for that reason. I also have Raynauds and so depending on the temperature outside, choosing footwear and driving is difficult. Can’t have them too cold or it causes problems, can’t have them too hot in boots either because then driving is agonizing. I have it in my hands and face as well, so the temperature has to be just right in the car. It’s so difficult to get it right most of the year so I just drive very infrequently, in fact I rarely leave the house in general for more than a few minutes other than to quickly walk the dogs.
p.s. I didn’t know this forum existed until now, I have google alerts set up for EM, on the off chance there’s ever any further research or whatever, and this post popped up. So I’m also new here!
Sounds like you are pretty standard. I would first recommend that you determine if you are primary or secondary. Primary is often controlled by aspirin. Secondary is all over the place as far as pharmaceuticals. This is where I am.
I went to Mayo right before the pandemic. They were helpful as far as the diagnosis (including whether it is primary or secondary) but not so much as far as the protocol. I spent several months on compounded creams but not a lot of help. So I finally gave in to the urge to try pharmaceuticals.
My first was Venlafaxine. It helped but my cognition took a backward step. Then I tried a couple that didn’t help. The first one that helped was Amitriptyline. But I got pretty high in dosage. I stayed there a while and tried a second drug at my doctor’s recommendation. I tried Mexilitine but it didn’t do much. I finally hit on Amitriptyline plus Pregabalin (Lyrica) which helps more often than not. I added a third (Cymbalta) which loosened up my feet and made them feel much more normal. But I started having powerful nightmares and gave that up.
So I am currently using Amitriptyline and Pregabalin. I reduced the former dosage from 70 mg to 60 mg; the impact was noticeable but I have stayed on the two. My doctor wants to try a much reduced dose of Cymbalta hoping it won’t give nightmares at the lower dose.
BUT … I have started using Lidocaine Patches. You can only do 12 hours in a 24 hour period. I only use them to sleep. They work MOST of the time. They are a lot of daily work but what else can you do.
Finally, it is good to have a doctor that has patients and knows what protocols are out there and is willing to try things (within reason of course). BEST OF LUCK TO YOU!!
I have primary EM, though we’ve tried Aspirin and it didn’t help. I’m currently on a concoction of medications for EM, anxiety, depression and high blood pressure. The meds are helping the pain. (I can tell because my feet are worse when I don’t take them)
I’ve been working with my anesthesiologist for 7 to 8 years now, and was lucky enough to find someone who has treated this before.
I’m currently trying an IGIV treatment my doctor found in a study about EM.
We also have a couple other things we might try soon.
I’ve tried some patches and creams in the past but they didn’t help
I have Primary Erythromelalgia and have symptoms every day and I do drive. I also have Raynauds but less frequently. When my feet get hot I sometimes have to take my shoes off to drive home. It helps to have breathable footwear and have air in the vehicle blowing on your feet if it is hot outside. It does limit how much time you spend shopping or running errands and if I feel heat coming on I have to go home. Stress does make symptoms flare but this is a disease that is frustrating and doctors seem at a loss. My faith keeps me going.
I’m really sorry🥺
This sucks, and I wish none of us had to deal with it.
Has your doctor treated a patient with EM before?
I’ll be thinking about you
)