Veins enlarged, anyone at all with EM have this?

Hi everyone !

First, I hope that today brings much pain relief and cooling to all of you. It is 94 today here in Massachusetts ! My EM is on the second plus year and it is worse this summer then last.

Does anyone at all get enlarged veins on their arms,hands or legs, feet?

As soon as my arm hits the heat, the veins enlarge in front of my eyes. Extremely big that they look like they will explode.

I know everyone gets the hot hands and feet and red, yes I get that, but the veins ?

Do they go hand in hand?

It is causing great anxiety, I mean severe when I see this happen, which is daily… more than I can count. Unless I stay in a bubble of ac.

Yes! The veins on my hands and feet bulge, possibly from the swelling. I’m newly diagnosed, so I’m not sure if they go hand and hand with EM but it seems like it for me. I also experience rashes when I’m in the sun and/or get hot, which I’m also unsure of the relation to EM.

I can empathize with your weather situation…high 90s all week in TN with 100 forecast for the weekend :unamused:

Absolutely, they enlarge automatically, huge all the way up my shins…and hands. Barely out 10 minutes in heat…

Thank you for your reply. It seems that this isn’t the case for everyone with EM. Have you been lucky enough to figure out the reason why you have EM? I am wondering if those that get the bulging veins all have the same reason. It’s interesting that the websites do not mention anything at all about veins. These last few weeks 90’s and next week too! It’s aweful ! I hope you are able to get some relief.

Thank you for your reply. Do you know the reason why you have EM? It seems that not everyone has this happen to their veins and it isn’t even listed as a symptom of EM. I am curious if either of you know why you have it and maybe that will shoot me in the right direction. I am heading to Mayo in MN in the future and hope to find all these answers out now.

Unfortunately, I have not found the cause of my EM. I have other symptoms (rashes, joint pain, +antiphospholipid antibodies, fatigue, circulation issues) that indicate something else could be going on, but the doctor’s can’t seem to figure out what it is. Hope your journey is easier!

I am sorry. I will let you know if my journey turns into a conclusion. You just never know. If everyone that has this, keeps posting, we can all help each other. Someone’s reason may be something that another doctor never thought of. There is a reason. Just remember that. There just is not enough people and not enough funding. Soon as I can feel a bit better about this whole thing and winter time, I will be reaching out to the higher ups and funding etc. etc. etc. because this needs more research to find out the other reasons people have it if all causes have been exhausted.

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Yes common theme–not enough of us to really study this

It happens to me too :frowning:

One possible cause of EM is vitamin B12 deficiency. Have yours checked, it is a separate test. Make sure it is in the upper half of the range or you may be low. Neurological symptoms are known to occur below 450 pg/nL. You are especially at risk if you are a vegan/vegetarian, have taken stomach acid reducing drugs or metformin for a long time, or there is pernicious anemia in your family history.

Traditional doctors don’t often think to check B12 so you need to ask for a specific test. It’s a good idea to also have your folate and D tested as health problems can occur when they are low.

I have a severe vit D deficiency, my vit B12 levels are ok. But i don´t think it´s related to EM.
I´m starting to think there´s no reason for my EM, just and unpleasant gift life gave me with no return policy.

There are some of your symptoms which make me think auto immune. I am not a doctor so this is just my suggestion. Have you seen a rheumatologist? Because I have Lupus and what you are saying, sounds similar to Lupus. If you haven’t seen a rheumatologist I would get an appointment with one to run those labs. EM can be secondary to Lupus. I have not gotten that one proved on me yet…

I have also had my b12 checked and it was normal. However, I have started taking B12 Complex with folic acid in it and it has made no change to the symptoms but has provided me with maybe a better mood and more energy.

It’s very interesting you mention Lupus. When I first went to the doctor for my symptoms, she immediately thought lupus, but the rheumatologist I’ve been seeing since summer has not been able to determine if this is case. Although, she does keep mentioning it as a possibility, despite any blood evidence: I’ve had one positive ANA in between two negative tests (months between). It’s my understanding ANA can change, though.

I’m scheduled to see a far more experienced rheumatologist for a second opinion in a few weeks, so maybe he will have better luck. At this point, we’re trying to either rule out rheumatology or get an idea of what’s going on. It is a frustrating journey for sure, but I do feel grateful that my doctors have recognized my EM pretty quickly from when the symptoms started (although it feels like a life time to me).

Personally I´ve been tested for lupus and it came back negative. I still have no idea what is causing my EM, probably i´ll never know!

I’m sure you feel a little bit like me: Happy I haven’t been diagnosed with anything else but wanting to know what is going on :frowning:

Yes! Did you EM started out the blue too?

Yes! It came out of nowhere for sure :frowning:

Mine too :frowning:
At the beginning i innocently thought it was going to go away on its own, now i know it´s here to stay!!
Are you on any meds right now? is it just your feet? i have it my feet, hands and ears!

I have it in my feet and hands. I take gabapentin and a daily aspirin, but neither do much to help :frowning: