Hi, I was wondering if other symptoms during flares are common for anyone else - like almost passing out, getting dizzy, or stomach aches? For context, I’ve had EM since I was 6, and some combo of these symptoms pop up when an EM flare is worse than normal or I try to push through it for too long. Is this a normal problem for anyone else or do I have other things to look into?
Your symptoms are not like typical EM flare ups . Typically there is burning with or without RPS (pain) skin turns red to purplish on the palms of your hand or hands ,or bottom of your feet . It can show up as a butterfly pattern on your face back to your ears. It’s a neuro vascular disease . EM is sensitive to aspirin . Sometimes the pain can get intense . Doctors don’t know what to do with it. It’s a rare disease. I’ve seen patients with cervical spine injuries (vagus nerve) , that can manifest into some of your symptoms . Sounds like it’s neurological .
I have all the normal symptoms and have already been diagnosed with EM, but also have some other heat triggered symptoms that are happening at the same time as flare ups.
It sounds like you should also be evaluated for autonomic dysfunction. Use that phrase with your doctor, and they should test your blood pressure and heart rate laying down and standing position. Do you feel that your heart rate races when you stand up or you do minimal activity? There is a condition called postural orthostatic tachycardia syndrome.POTS for short. You may need also a tilt table test. Hang in there…
I wonder if it’s related to pushing through the flares for so many years that the stress on your nervous system is starting to cause these effects? Reminds me of my own experience. After so many years of pushing through it (I use that same phrase) I hit a tipping point and really had to transition into a new understanding of my limitations. That’s when I had to fully “come out” and address the fact that I have a disability and that I need some pretty major work accommodations (mainly working from home—I have had to reduce my hours and my earnings but…) and that I had to learn my limitations outside of work too. It was a process to finally get to be where I’m at now. My life has changed so much but I can manage my pain and all the other effects from the stress on my system. Wishing you the best. I agree with the guys that you should talk to your doctor.
I felt I could relate to your description. I have vasculitis and secondary to that EM and I think it is the EM rather than the vasculitis which flares…
I’m usually positive, if a bit driving - I will get better sort of thing. I therefore found the flaring really frustrating and would try and push myself on. I realised that this was not working and I was getting horrific flares and the thing just went wild - all over the place - ears hands feet - and ulcers. I realised that I would have to confine my activities within the range allowed me by my legs. They became the limiting factor, and I had to give up a lot to achieve this. My social life shrank considerably. I also spoke with a Buddhist monk and he said I needed to be grateful to my legs and thank them for supporting me during me during this condition.
So now I do that and the vasculitis and EM are in much more of a steady state, and at a lower level of discomfort. A settled routine of ice packs, Rituximab for the vasculitis, a top vasculitis specialist have resulted in, say, a 10 or 15% overall improvement. That may not sound huge but it has provided more ease and freedom. In the first few years I did have some vertigo-y experiences and alarming atrial fibrillation and heart pain episodes. But these have gone with some cardiac medication for atrial fibrillation and a pacemaker. Things have settled down so I have very rare but smaller AF. So all in all I can forget the cardiac side now.
Hope something in there will be useful for you. Good luck
Hi Wils, I can relate. My EM strangely does something similar to me. I was actually telling my husband just yesterday about how nauseous I was feeling. I’ve been stuck in a horrible EM flare for several weeks now and we’re experiencing a heat wave.
I’m doing all I can with ice packs, fans, A/C and elevation, etc, but felt that the nausea was my body’s way of saying it was maxed out: can’t release the heat normally so…?