Hi everyone, this is my first post on this forum. I’ve had Raynauds for 15 years and EM for the last 8 years. All bloodwork is normal with the exception of a low positive ANA associated with connective tissue disease (autoimmune) that I’ve tested for since I had Raynauds 15 years ago but no physical manifestations if any autoimmune issues. Other than Raynauds & EM of course. My EM was always so mild with very occasional flares that were usually triggered by wine. It was mostly in my hands. I never did much research on it because it was so mild I didn’t need to. Fast forward to now expecting my first child at 34 years old. Beginning at 9 weeks pregnant my toes turned pink/red and they remain that way 24/7 and I started getting constant severe flares in my feet. I had never experienced anything like this so it’s obvious the pregnancy is triggering it. I’m now 12 weeks and I’m in constant misery & stress. I’m so scared that if it’s this bad now I can only imagine how bad it will be as I get further along and deal with the challenges of a growing pregnancy. I hate to say this but I’m considering termination. However I’ve read a few experiences of others getting flares after miscarriages etc that I’m not convinced a shock to my system from termination wouldn’t cause more issues or flares. I feel like I’ve completely lost myself in a matter of weeks. I was happy young and overall healthy thriving and loving life and now I’m here. I’m terrified after reading how bad this can really get. I’m scared it has now been triggered & will never go back to how it was (mild occasional flares).
There is such limited information and experiences with this disease and even more limited on pregnancy experiences. Any info, experiences, recommendations, encouragement, etc would be so appreciated.
The hormones associated with pregnancy tend to cause vasodilation and swelling which also aids in increasing blood flow to the growing fetus. People without EM often experience EM symptoms during pregnancy for these reasons. So, having EM prior to pregnancy most likely indicates that this is a constant flare due to these factors aggravating your EM. People with miscarriages that develop EM could also have anti-phospholipid syndrome associated with underlying Lupus so that could be a different cause than what you are experiencing. My best guess is that this will subside a few months after having your baby, back to your original EM baseline that is. Regardless, I’m sorry you are going through this. Compression stockings and intermittent elevation might ease the discomfort and pain in the meantime.
Thanks for this! Good news is I’ve been tested for so much and I do not have the anti phospholipid syndrome or any other blood clotting concerns (outside of normal risks with pregnancy). If I somehow knew it would return to how it was after delivery I think I would feel better about going through with it but I’m definitely nervous I’ve got six more months of hell
I can definitely understand the frustration of enduring it but here is the beginning of an abstract from a 2013 article on EM by Dr. Mark Davis from Mayo Clinic. Pregnancy is in the main list of causes of EM so I would assume already having EM and then getting pregnant, it could worsen temporarily.
“Erythromelalgia has been reported in association with myeloproliferative diseases, blood disorders, drugs, infectious diseases, food ingestion (mushrooms), neoplasms, connective tissue disease, physiological conditions (pregnancy), and neuropathies.”
It is at the top of the page in the description but I’m not sure the public will have access to the journal. It gets the point across that pregnancy is one of the top causes of EM, although usually transient.
Thank you. I also saw connective tissue disease is on the list. I’ve recently been diagnosed with RA. I also saw your older posts with pictures , before and after and complete descriptions with treatments as well. Very helpful and my feet are exactly like yours and started out worse. I asked my mother if she experienced COVID feet because I happen to see a random post and she has. Plus, the sores. Essentially all similar symptoms of this condition. I’m in Houston so the heat can be very tricky.
