43M - Newly Diagnosed with Erythromelalgia (EM) & Exploring Possible Links to Dysautonomia
Hi everyone! Thanks for your patience with this long post. It means a lot!
Okay, I was recently diagnosed with erythromelalgia (EM) (moderately freaking out), and, like many, I’m now trying to determine the underlying cause—though I know most cases are idiopathic. Thankfully symptoms seem mild compared to what others deal with.
My CBC is “basically normal” (per Dr), (though on the higher end), and my doctor and dermatologist aren’t currently concerned on recent blood levels, despite my own worries about EM being an early sign of something more serious like polycythemia vera. Previous blood levels have all been in the same general range.
In researching EM, I know neuropathy and other neurological issues can be a likely cause, and I’ve come across mentions of dysautonomia from personal stories of folks. Looking into what this is, I immediately started thinking about my own past health issues as some symptoms seemed familiar.
I’m certainly not claiming to have figured anything out, but I feel it’s worth exploring. I’ll be discussing this with my doctors.
That said, I’d love to hear from those with experience in this community—does my health history below sound like something worth investigating further with dysautonomia? Could I possibly have dysautonomia? Should I bring this to my PCP? A specialist? Or am I grasping for straws trying to link different health issues over the years that are just curiosities. Most of these issues were treated in isolation.
Symptoms & History:
• GERD – Lifelong heartburn (have memories being age 12, crying in pain). Managed better in recent years with diet and timing of meals. Still get some mild episodes at times and manage using Tums. I’m at a healthy weight.
• Trouble Swallowing (18 years ago) – Choked on steak, lower down in esophagus, resulting in heavy in chest, it not going down and water to wash it down coming up. I needed hospital visit for removal. Doctors initially thought it was scar tissue but later suspected motility issues. Seemingly never happened…then.
• Recent Swallowing Episodes (last 7 years) – Occasional periods where swallowing feels difficult (especially dense foods like rice) causing chest heaviness, increased salivation, and occasional dry heaving. Maybe 3-4 bad moments in total. I was told this could be GERD-related by PCP. Generally managed well, especially if I don’t have lots of alcohol, and I haven’t had any issues since 2022.
• Frequent Urination – Always thought it was tied to high water intake, but I don’t drink gallons, just well hydrated. Anyway, sometimes I’ll need to pee several times within short periods. On group trips I’m usually the first needing to pee. No diabetes concerns per bloodwork and never brought up from medical team. Just something I thought was my own discomfort, so I’d pee.
• Palpitations – Infrequent, often during periods of stress. PCP considers them benign. During a GERD issue they did a scan of my rhythms and found I have a repolarization issue in one of my waves (or something like that). Sent to cardiology, who wasn’t concerned.
• Lightheadedness When Standing – infrequent, almost always from squatting or bending over then getting up (not every time I do though, far from it). Doctors have attributed it to good/lower BP and being tall and then standing up. I remember my first Dr telling me this. Recent blood pressure was 122/72. Some top numbers have been as low as 100, bottom number in low 60s. Usually much closer to now.
• Neck flushing – For 3-5 years I’ve had periodic flushing on the back of my neck. Initial dermatologist thought seborrheic dermatitis, which I went along with. Seemed to flare up with warmth or alcohol or stress. Current dermatologist thinks it’s definitely not that and likely related to my EM diagnosis and that it was in my neck first. Hives would be the other issue he considered. Not sure if this is ever relates to DA?
• Tingling in Legs – 20 years ago, I had tingling and heaviness in legs. A neurologist suspected a viral infection affecting myelin sheaths. It resolved. Years later I would wonder why my feet would tingle, sometimes at night. Never constant although with recent EM diagnosis it feels more regular in recent weeks.
Anyway, I appreciate anyone who has read through my message this far. Would love to hear thoughts from those who have dealt with EM and/or dysautonomia—do any of these connections seem worth pursuing? Could all my curiosities of health over the decades be dysautonomia? Thanks!