EM and time of day

General
1

My EM is always worse at night. Is that common?

2

Yes.

Whats your symptoms? Do you have pain?

3

Feet swell and burn. Yes very painful. I get attacks sometimes
during the day, but I get them EVERY night after dinner without
fail. I was wondering if other EM patients experienced the same
thing.

Jim
4

Yes.

The parasympathetic nervous system is one of the divisions of the the autonomic nervous system, which regulates the body’s unconscious actions. It is commonly thought of as the “rest and digest” system. The parasympathetic nervous system predominates at night and is active after meals, enhancing blood flow through vasodilation (among other things). This worsens EM symptoms.

The sympathetic nervous system is active during the day, particularly after waking. It enables the opposite reactions, which is why your EM is better earlier in the day.

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5

That makes sense. What’s the best treatment these days?

6

Unfortunately, there isn’t a single “best” treatment. In the absence of concomitant disease, a sodium channel blocker may be considered a first line therapy. Treatment for most still ends up a trial and error process.

7

Mine is always worse at night…

1 Like
8

Yes, somebody else said it’s because EM affects the parasympathetic
nervous system, and that system is more active at night. That seems
to make sense. How long have you had it?

Jim
9

Just to clarify, EM doesn’t affect the parasympathetic nervous system itself. EM is caused by vascular hyperemia and that is worsened when the parasympathetic nervous system is activated.

10

Evening is always the worst time. I have found an Industrial Hemp CBD salve that helps calm my feet and reduce the burning and swelling.
It has really helped me sleep better too.

1 Like
11

My feet are really bad at night in bed so much so that I feel I can’t go on anymore. My hands burn like hell also, I’m absolutely knackered in the morning because I can’t get any sleep. Help please?

12

I would make a list of all treatment approaches you have tried, cross reference it with the list of treatments found on pages 5-12 in the PDF linked below from The Erythromelalgia Association, and write down the treatments you have not tried yet. Hopefully that will provide you with some new avenues to investigate with your doctor.

If you are thinking about imminently harming yourself, please contact emergency services first.