If EM is left untreated, what happens?

Hey guys. I’m still relativity new to this site, I was only newly diagnosed with EM but I’ve had it for about 15 years. I really just have a simple question, since I don’t have a doctor that can really answer it. What happens to EM if you do not treat it, and live in a climate that is too hot for you?

As mentioned I’ve had this for 15 years but it didn’t actually become a painful problem until I moved to Texas. I work at a company that does allow for full time remote, but my boos, despite the fact that people are literally hired on as remote and half the company does not live within range of one of our offices, doesn’t want to let me have it. But at this point I was in the hospital five times this summer because it was 115+ degrees, I was so in so much pain and could not drink enough to stay hydrated. I became afraid I would die from it. Its possible there is some other problem along with the EM, but whatever it could be is also reactive to heat.

So, I need to know what are the consequences of living in a place that is well above my threshold temperature for long periods? Props if anyone knows a doctor in Austin, TX that works with EM patients that can help me as well. I’m afraid of what this weather is going to do to my health, and want to bring that to her attention. I did not have pain associated with this until I moved here, and I lived in Florida so my Threshold seems to be pretty high. But its not seventh circle of hell high.

You’re right, Texas is not a great place for people with EM. The heat and humidity are, at times, unbearable for EM sufferers. I live near Austin and have been to three different doctors there. I saw a rheumatologist that had seen a handful of people with EM, but it was secondary to autoimmune diseases. She said aspirin had helped them. She sent me to a hematologist that had seen a couple of people with EM, but it was secondary to myeloproliferative diseases. Those also had responded well to aspirin. Well, aspirin helped me for a few weeks a couple of years ago but then it stopped working. So the hematologist didn’t know what to do with me and sent me to a pain specialist. The pain specialist has only seen one other person with EM and it was secondary to cancer. When the cancer went away, so did the EM. The pain doc doesn’t even know how to pronounce Erythromelalgia and fully admitted that he doesn’t know what to do with me so I don’t really know why I should go back.

Sorry I am not any help except to agree with you that Texas heat sucks. This morning started out at 59 degrees though, so I am loving that. Maybe fall has finally arrived and you can at least find some relief with cooler temperatures. Please let me know if you do find a good EM doc in Austin.

i believe it just progresses

same with raynauds and neuropathy. seems like the more your blood vessels get used to contacting and explaining the more they do. it becomes a new pattern.

Raynauds doesnt progress.

And how can u say that EM progress? Its alot of people here which have had this condition for 15 years, in a mild version.

Anything can progress as you age and factors change. My EM was fine until I moved to texas and experienced 4 months of 115 degree weather. Now I’m in terrible pain and I’m worried what another summer like that will do to my health overall. That’s generally why I poses this question, incase someone had more concrete answers or knew of where I might find them.

Sorry to hear that.

But have u tried CBD oil? For ur pain? Have read some threads here at the forum where people sais that there pain and flares have been 70-80% reduced due to the oil.

This is borderline spamming. She is genuinely concerned about her EM progressing and it can and so can Raynaud’s. @RandomWindowArt I think that EM progressing really depends on what the specific cause of your EM is. There are a handful of things that can cause EM and some of these conditions can lead to a progression, others not, and some may resolve on their on over time. I think finding a doctor who is familiar with EM is the first and often hardest step in the process and then working with them to rule out causes and trial and error medications to see what exactly helps to identify the root cause. It is possible to control but takes time, patience, and a dedicated observation of your symptoms and what certain medications and therapies do to your EM.

Thanks joeshmoe, I am in the search for someone in or around Austin as we speak! The rheumatologist that diagnosed me said he’d ask around but had no luck so far either. I honest believe the heat itself is the root cause of my EM. I was only diagnosed this year but have had red feet and hands for a long time. But it wasn’t until 4 months of 115 degree texas heat that I started having pain that led to the diagnosis. I had actually gone to a podiatrist first because my hands hurting isn’t new (I’m an artist by trade, they hurt all the time lol!).

That’s partly why I want to convince my boss to let me go full time remote, because I just don’t think my body can tolerate this heat,since to me it seems to heat itself is what has caused the problems since I’ve never had this bad before. Plus I’m from Northern Europe so heat is not what I’m accustomed to!

I’ll keep the search up, perhaps Houston has someone since they seem to be the speciality doctor capital of texas.

I fully agree with you that heat is the most important factor to cause EM flares. My EM did a bad turn for the worse, got tested for a batch of outoimmune diseases which showes strong positive for two, was put on meds to control the outoimmune diseases and I was doing relatively well for a while. I was just building up hope that the EM is kept in check when summer arrived eith a whopping 37° C. Back to square one! Heat and barometric pressure plays havoc with EM.