HI All, I have a question. 5.5 years ago I broke some toes (badly). A month later I had EM. It has since stabilized, being limited to my hands and feet. The severity changes, but not radically and I am being treated with sidenafil, lyrica and aspirin. I have a high quality of life but am limited in how far I can walk.
Saturday, I broke another toe, on the same foot as the first break. I am worried it will destabilize my disease and make it spread.
Since the break, I flare severely in the foot with the broken toe when I stand for more than 10 minutes. (My flares are usually bi-lateral). When I keep the foot up, I am fine.
I am not sure what to do. Do I stop moving as much as possible? Or try to keep the muscles active, try to exercise to promote blood flow, yet avoid standing upright? The surgical shoe is enough to keep the toe from moving so I am not worried about that. I could easily use my rowing machine.
Any thoughts? Has any one else had their EM triggered by a broken bone/trauma? Has anyone had their EM destabilize due to trauma? Is there something I can take to prevent the disease from spreading? (Calcium citrate?)
Am waiting to hear from my wonderful doctor but she came back from maternity leave yesterday.
You may just be having inflammation from the broken toe. It’s difficult to tell the difference between erythema caused by immune mediated inflammation and erythema caused by erythromelalgia when it’s in the same area. Because inflammation and EM both just show as erythema and feel very similar.
My EM is primarily at my knees. I’ve fallen while running outdoors a couple times and completely skinned up my knees. For days afterwards my knees had EM like erythema, red and hot. But it was inflammation and not an EM flare. Once the cuts healed the erythema went away.
Thanks. I am sure you are right. I can’t help but worrying about longer term implications, though, as the first break was what triggered the EM. Any thoughts on that?
It does seem injury can sometimes be an initial trigger for EM. My EM started following a knee injury. However, I’ve had subsequent injuries that did not trigger additional or worsen existing symptoms. It’s possible stress hormones play a role, so try to relax and let yourself heal. (I know that can sometimes be easier said than done!)
For what it’s worth, Jalika, my EM definitely started after a fall – about two months after, in fact. The leg that had sustained the main injury (broken knee) rather suddenly became very swollen and hot. Eventually I was given an Electromyography and Nerve ConductionTest, which detected fairly severe peripheral neuropathy. The EM diagnosis was added a couple of months after that by a rheumatologist who was very knowledgeable about EM (I was so luck to find her!). The neurologist wasn’t convinced that the injury had caused the PN, but no other cause has been determined (no diabetes, for instance), and the coincidence with my fall just seemed so close. But I’m delighted to report that both the neuropathy and the EM are now mild enough that they don’t interfere with my activities at all. And both started to improve when I began seeing a very kind and skilled physical therapist, who advised a slow program of muscle massage and walking. So maybe a compromise between SOME exercise and a good bit of elevated-foot rest? Good luck!
I’m sorry I can’t help with your questions as my EM is not from injury. I do have a question for you please. You mentioned that your doctor prescribed aspirin. May I ask how much aspirin? Aspirin is the one thing that helps me most. I take it with magnesium citrate. However, I have trouble taking the aspirin everyday due to stomach issues. If I take 650 mg daily my EM is greatly improved.
Hi Herdfan, I am glad the aspirin helps you. I take 325 a day and have for more than five years. I am not convinced it is doing much for me. It is great that you found something that helps so much but so frustrating that it is occasionally out of reach. I will reach out to my doctor to see if I can increase my dose, at least to see.
Hi Jalika. I too have a bad foot injury (it was crushed in motorcycle accident) as well as EM. I get at least one attack every day, and it’s always much worse in the bad foot than the good one. The EM surfaced about 20 years after the accident, so I know it wasn’t caused by the initial trauma itself. I may have gotten it from one of the many operations I’ve had (cutting nerves) or by the anesthetic epidural I had on one of them (I think it may have damaged my nervous system). Aspirin used to help but doesn’t anymore, same with Lyrica, Gabapentin, and dozens of other things I’ve tried. Sidenafil is a vasodilator, so I don’t see how that could help. Pseudoefedrine is a vasoconstrictor and has worked well before gives me stomach problems. Have not been able to find any doctors that can help. I have to keep cool and calm and can’t do anything too strenuous.
J’ai aussi une erythermalgie primaire et j’ai commencé à prendre du LAXORYL et cela m’a sauvé; je peux enfin dormir (pas depuis 2 ans) et pratiquement plus de douleurs; j’espère cela va durer.
Puis-je demander, êtes-vous en France or au Canada?
So, I finally saw my doctor. She said that trauma can destabilize the disease. Her advice was to avoid situations that would make my foot swell (due to the break) or flare. So I am teaching (I am a professor) online for a bit. She also upped my dosage of lyrica to make sure my nervous system doesn’t overreact. It is making me rather tired and a bit slow on the uptake. Hope the students don’t notice.