Thank you for the warm welcome. I'm grateful to have this community to share with and learn from. I will share my story with you.
I am new to EM. I diagnosed myself from searching on the internet about 6-7 weeks ago, and then went to see my primary doctor. He had never seen a case of EM before. He did a complete blood panel and also an ANA test. The ANA test was the only thing that came back abnormal - it was positive but not very high numbers and showed a non-specific pattern. Thus my doctor is skeptical whether I actually have EM or an early manifestation of an autoimmune condition. As for me, I am 100% positive I have EM (whether primary or secondary I don't know) but my symptoms are classic EM and have worsened noticeably in only a few weeks. I have daily flares in my feet, worse in late afternoon and of course night time, but now with warmer weather I can't even venture outside with out suffering a flare within minutes. My hands also flare. They are red hot and swollen, but I don't feel the same pain that I do in my feet. Stuffy warm rooms are terrible, cooking, cleaning and STRESS - the worst.
Back to my doctor... he put me on gabapentin. A low dose, 100 mg x3 daily. At my follow up visit with no noticeable improvement, he added Cymbalta - also low dose and the topical cream with ketamine and amitriptyline. I have noticed no improvement in several days of using the cream. After several days on Cymbalta I feel awful. Foggy head, hot face with pins and needles sensation, headache and muddy thoughts. I thought I was going to black out while getting my haircut today. I want to stop taking it. I feel so bad.
As for how I think I got EM - I don't know. I don't have good veins in my legs, so venous insufficiency could be an underlying cause, but I don't think it just began with that. I first started getting random symptoms of EM back in the winter of 2014, but they were sporadic and went away after a couple months or maybe less. At that time, I never made the clear connection with a heat trigger.. These initial EM symptoms showed up at the same time I was suffering through a wave of skin problems after having the Mirena IUD placed (to treat heavy periods). Skin problems popped up immediately. I got scared and had the IUD removed only three weeks later, but the skin fallout persisted and then the initial EM symptoms first showed up at the same time. Fast forward a year later, and I was surprised with the EM symptoms came back (although I hadn't figure out it was EM yet). This time however, the pain and flares became regular very quickly and my hands also became involved. This is when I started researching my symptoms.
I need more answers than my primary doctor can give me. He knows nothing really, and chose his prescriptions for me from a printout of Dr. Jay Cohen's article that I brought into his office.
I have an appointment with a vascular specialist in a couple of weeks. I would be grateful to know if a vascular doctor has been helpful to anyone here. I am hoping for a firm diagnosis and some help determining the cause of my EM. I don't know if she will be able to help me with the pain or not.
Right now, at this early stage I am really struggling emotionally. I am stunned at how quickly my life has been changed so radically. I used to walk miles and miles and hike with my husband, kids and dog, ride my bike, garden and cook and now I can do none of these things. I can't even get to the mailbox without pain. I have three teenage kids and I am scared for them. I'm scared for me and my husband.
I would so appreciate any advice from any of you who might be able to help me. So far, the only relief I seem to be getting is from my fan and elevating my feet. I don't think the meds are doing squat. I am otherwise healthy and have enjoyed an active life until now.
Thank you for responding with any suggestions. Grateful to all of you, and praying that we all find relief from this scourge.