Progression of EM and Pain Level

Hi, there- I don’t have a diagnosis of EM, but I think I have it based on all the reading I’ve done. Does EM start out slow and then progress? Mine started with burning red hot feet in both feet here and there. I asked my rheumatologist if this could be symptoms of Rheumatoid Arthritis and she said yes. I was diagnosed with RA last year and thus far the pain was only in my hands and wrists and it did not cause redness, heat or a burning sensation. It’s completely different. My pain scale for my feet is about a 3 or 4 and it happens every day now sometimes in the morning and always at night. It sometimes keeps me from falling asleep right away. Could this be EM? I get CBCs all the time and recently had a battery of neurological tests including a nerve conduction test which was normal. I had them to try to determine why I have weakness in my legs all the time. Thank you for listening.

Hi Nancy I’m not sure what is “typical”. For me, one day I was fine, and the next night I had my first crazy flare. So onset was very sudden. Since then every night I flare. I think that it has progressed for me in the sense that now during the day I am very easily triggered by anything (at first it was just night). The pain of my flares has not increased … but I am only 1 data point.

I hope you can start trying some medications soon for this, as treatment is generally trial and error. Antidepressants like cymbalta can also take a while to “kick in”. It can take a while for a diagnosis and many self-diagnose, and then doctors confirm. IMO best to go to a large teaching hospital (rheumatology) if you don’t even know where to start, but hopefully your RA doc is familiar with EM or can refer you.

All my bloodwork / tests are normal btw as well.

Trust your instincts, keep reading / learning about EM, ask your doctors lots of questions … If there’s anything I’ve learned from this experience, it is that you are your own health care advocate. I think in many cases the patient ends up knowing more than the doctors.

Best wishes

https://jamanetwork.com/journals/jamadermatology/fullarticle/190045 there’s probably something more recent but if you scan for “symptom progression” you’ll read that ~ 30% progress, ~30% stay the same, ~30% get a little better, ~10% have full improvement.

Your doctor should take x-rays of your feet to determine if there is any evidence of RA damage there.

Hi, Carter-
I actually did have X-rays of my feet recently and they were normal. Thanks!

Nancy

standing_cat,

Thank you for your message and the link. I read the article. I was shocked to hear of the high mortality/morbidity rate with EM as I had not read that before. I am definitely going to pull some informative articles to bring to the next appointment with my rheumatologist in case she isn’t knowledgeable about it. Thank you again.

Nancy

Most people with EM don’t have weakness from it, just pain and swelling. You could have other issues of course and EM can be a side effect of other more well known diseasss.

People with cancer and arthritis may get EM as a side effect of medication. Or from nerve damage from medication. Or from one of many nerve disorders. There are many csusss.

My mom got it from risperdal.

If you want to know whether you have EM or not you can do a very simple test. If you heat up your feet and they swell and are suffering from a flare, for example using warm water, that’s a bad sign. Heat causes flares. If you chill the feet and get relief from chilling them that’s a sign you could have EM as well. Heat causing flares is a sign and cooling relieving them is a sign.

A lot of doctors won’t do a simple test of warming up your feet to create a flare, because they don’t want to do harm. Do no harm is a part of their oath so they may not give you the simple test you can do yourself, but they may deduce that you have it from your symptom description and run tests to see what underlying causes could be triggering EM like flares.

If you have a mild EM symptom, even everyday, my Non medical advice would be to take it easy and beware of some medications which could make it worse. Effexor and Risperdol are on the bad drug side effect list for my mom. I have a layman theory but it’s only as an observer seeing that Risperdol caused my mom’s flares and made them severe. Some medications may effect a very small minority of the population and give EM or even permanent EM to them. These two drugs seem to effect the neurotransmitters in a very negative way for my mom and perhaps a few others.

So tread lightly on some of the medications you might be given and if they seem to cause a flare, I’d suggest stop them and get more opinions from doctors.

Now I’m not a doctor but just relaying what I’ve seen.

Some people also have used ketamine cream with amatriptyline both in small doses in a cream compounded. Some reported a slight warming with that mixture. The tricyclics antidepressant used in that mix the amatriptyline can effect the 5ht serotonin neurotransmitters almost the same way as Risperdol does. Which can cause burning or heat sensations and destroy or limit the body’s ability to do thermal regulation. So ironically the mix of Effexor with ketamine cause be triggering mini flares before the ketamine kicks it. This to me is a sign that some antidepressant drugs can trigger EM. But I have yet to get a medical MD to confirm this. Ere is circumstantial evidence in some reports from members of the forum that Effexor made their symptoms appear or made them worse.

But this is perhaps for a very small percentage of a small population of EM suffering patients.