I have EM, Postural Orthostatic Tachycardia Syndrome (POTS) which is a form of dysfunctional Autonomic Nervous System and over active mast cells. Lots of POTS patients have mast cell problems. And I've been told by one other woman on a POTS forum that her specialist told her that there is a small subset of POTS patients who have EM. As all three disorders have flushing in common it's sometimes hard to know what is happening when. Plus throw in menopause (I'm pretty much over it now) and it all gets very complicated.
I can see you have a lot going on. It helps to know that other people get the same sort of pains and sensations as I do. And also the meds they take. When I was first diagnosed with EM about 8 years ago I also had other health problems (one of them medication, food, chemical sensitivities) and the doc and I decided that I'd just live with it for the time being. I was taking other meds but it was a bit of a battle working out which ones I could take. I felt like a guinea pig in an experiment. Living with the EM for 5 years was challenging but I managed. However, the past 3 years it's progressed a lot. I do feel better emotionally and physically when I swim in the ocean - so cooling and the effects lasted for up to 3 to 4 hours on the hottest days sometimes. But we've lived away from the ocean for about 4 years ago now, so I think it's no coincidence that I find the pain, while it has progressed, so difficult to manage. My emotions take a hit. Walking is a tough exercise for me to do. Not just the burning but I have POTS which means I'm challenged to stand up right for any great length of time because of other symptoms most of them distinct from EM symptoms.
Anyway (I'm repeating myself all over the sit, I'm sure) to move on, I no longer expect a 100% management of my symptoms like I did when I first got sick. Having expectations of improvement is much more realistic and you and others have helped me to see this more clearly.
Although the sheets and clothes and even my hair can hurt me at times I feel a lot more calm about it having read here that I'm not the only one. It helps to know that others have this weird problem -- all of it -- I knew it was real but it's hard to face up to docs, friends and family who think you must be a bit crazy because they've never heard of such a thing before.
I woke at 3.15am this morning and that was the start of my day. I’d woken a number of times during the night to rearrange covers, stand in front of an open window stripped down to my underwear. But I got about 5 hours sleep in total I think and that will see me through the day.
EM-wise it’s a good start to the day for me. Only my upper arms, neck and feet are burning and they aren’t burning so much that all I can do is think about it. I’m able to distract myself from it.
Thank you for sharing your management plan with me. I really have to find a way of starting to exercise again. It must be so hard for you to manage the compression stockings. They are recommended for people with POTS but I couldn’t manage them. you are right, there are dark days but they do pass, eventually. Even when they come around again, I always remember they do pass.
And it's a really good point you made, that what works one week with EM may not work the next week.
This has certainly been my experience. It just took me over-long to wake up to that fact. I had been doing the all the same things over and over again to cope. Mostly it works, but I have finally recognised that some things I do are no longer effective.
Three important things I have learned from this site is that expectations of 100% are unrealistic, for me. That I need to trial medications longer if I can't stand the side effects as the side effects might pass and the medication might help when they do. and 3) how sometimes things we do to cope with symptoms stop working and that I have to move on and find new ways while keeping as many of the things that do help me as possible. Sometimes that's a very fine tightrope to walk. Hard to find balance. But no reason to give up in despair.