Does EM get worse with age?

General
1

Hi there! I am new and I appreciate the warm welcome I received when I joined this site. I have had Raynaud's since I was about 8 or 9 (so roughly 15 years). My Raynaud's has actually gotten BETTER over time, particularly after I went on oral birth control (which I was on for almost two years, from age 19-20). However, it was during that time period that I felt hot almost 24/7 and I started experiencing more of the "inverse of Raynaud's" which I had always had to some degree but seemed to get worse after starting the BC. Of course I found out recently that inverse is probably EM.

So far, I do not experience the pain that everyone talks about. My hands/feet get very uncomfortable and red--they throb and feel "heavy" but they do not hurt. I am wondering if this disease seems to get worse as it goes along? I can kind of remember having EM like symptoms over the past 15 years, but it seems to have gotten worse for me as I get older, particularly with hormonal changes.I am wondering if it will continue to progress? Or maybe the EM will get better but the Raynaud's will get worse again (I still do experience Raynaud's fairly frequently, but not nearly to the extent of when I was a child). Any insight into this would be helpful!

Thank you, and good luck to all of you.

2

I don't have an answer for you - just dropping in to say that I wonder the same thing. I have likely Raynaud's/EM combo too - and similar to your case, I often have flares that are not actually painful - just very, very hot. My toes usually get red and slightly swollen and just crazy hot. If it's a bad flare, the heat can make a stinging, burning sensation that is somewhat painful, but usually what I experience is simply very uncomfortable rather than painful. My issues all started after getting a Depo shot, so I have always thought hormone changes may have triggered it all.

3

Hi Libby, that's very interesting that the Depo shot caused your problem. I am hoping that we do not get worse! I always wonder what will happen if I actually get pregnant, or when I go through menopause. I am hoping someone else here can share their experiences with EM and how it changes over the years!

And i know when you mean, sometimes if it is really bad my feet/hands feel burn-y, but I have not experienced the level of pain that most people on the site have. I am wondering if someday that will start. :/

4

My doc told me becoming prego could help, well i was like and what if not? what I'm gonna do with a lil baby and horrible pain in my feet hmmm? But I understand he meant it that hormone changes can cause these issues.

> Libby: Wow... Not surprised gotta say. Depo shots always sounded like something scary to me.

> aftertheteacups: sometimes it hurts despite it doesnt look that bad, so i'd prefer red swollen with no pain rather than almost normaly looking with horrible aching ;)

5

btw my mom called me today saying she prob experienced her first EM attack at night. I hope it was just rare and only cuz her feet got really cold the day before, I hope its nothing permanent or that it wont get worse. btw she said: i finally understood what you were going thru.

Gotta say it almost sounded like she didnt believe my complains before... but again... not surprised tbh :/

6

Hi Liz, yeah I will gladly take the no-pain! I am just worried the pain is coming. Sometimes when I have bad Raynaud's, and if I let it go without trying to warm up, it will start to feel painful to me. But luckily I have only ever felt discomfort with the EM. I just wonder if that will last or no...

And I have worried about the pregnancy thing a lot. Pregnant women's feet swell anyway, so I can only imagine what happens when you add some EM to that mix...

And I'm sorry your mom had an EM attack, but in a way maybe now you will be able to rely on her for more support because she understands your pain.

7

My EM has gotten worse in that it is traveling. It started in the soles of my feet and has made its way to include my feet, ankles, lower legs, hands, wrist, face, ears. The pain in my feet has certainly gotten worse in the 4-5 years when it started. These days I can't walk on my apartment floor without shoes on, I can't take warm or hot showers, and I can't eat hot food. All those things are very painful for me. Everything else adds up but those things it only takes a few seconds before the pain is at an 8 and not long to 10.

8

my raynaud's attacks been always painful and specialy when it come to rewarming. i have to rewarm my hands very slow, other way the EM attack follows. somehow i think my EM was completely caused by my long years raynauds issues, so id suggest you to try to keep your extremities as much warm as possible. for me its guaranteed that the more cold my hands get, the more hot when rewarming. and its not just a question of minutes, i can have all day long white and deadly cold hands and then i get bad flaring in the evening. but in my case its definitely related.

from what your saying i wouldnt be too afraid, try to keep your feet/hands/ears warm, squeeze them when feeling numb, try some gingo biloba or something, and please never use cold water to get relief from EM. when related to raynauds it only makes things worse, typical vicious circle.

aftertheteacups said:

Hi Liz, yeah I will gladly take the no-pain! I am just worried the pain is coming. Sometimes when I have bad Raynaud's, and if I let it go without trying to warm up, it will start to feel painful to me. But luckily I have only ever felt discomfort with the EM. I just wonder if that will last or no...

9

hi danny, my right cheek and ear been killin me last few days (not saying the left side is okay, but the right is idk y much worse), its hard to find some position in bed when i couldnt lay on my face... kinda sucks... but still better than feet flaring. i hope its all just from the horrible cold temperatures we have had here last few days, it was -4°F yesterday i was on 3 hours walk with the dogs and my face been on fire the whole afternoon, swollen lips, nose red as rudolph and very very hot and swollen. wishing you painfree day, stay strong, xoxo, liz

10

liz after reading your replies to teacups I think I have raynauds or similar as well. it is 0 f here and when I go out and come back in the flaring is much worse especially in my face. i think a constant cool temp is what works best for me. I like 60 f . also the extreme cold does make my hands and feet hurt more. tho feels good on my face. my worst is my gums. they swell when they get too hot. makes eatting difficult. im constantly sipping a cold drink but maybe that makes it worse so I should just keep a drink at room temp? I will try that today. Thanks for the kind words, take care - danny

11

Hi Liz and Danny, thanks for your response. I agree, 60 is usually a good temp (although sometimes I will get EM or Raynaud's for no reason. Sometimes if I am anxious I get Raynaud's). I have never experienced any facial EM, but I hope you both figure out something to help your symptoms.

Side note: Liz, are you by any chance the same Liz on the Raynaud's forum who also has Rocasea, EM, and Raynaud's like me? Or are you a different Liz? :)

And another side note: Have either of you ever noticed that your feet will sometimes turn blue or purple if you sit or stand still for too long, or if your feet are dangling? This is something I have always experienced, but I am just wondering if this is common among us circulatory-challenged folks.

12

I can subscribe almost everything you describe, aftertheteacups. My EM started during the first month of oral birth control. So I do think as well, that hormonal changes play a big role.

First (6 years ago) only my feet got uncomfortable hot - but no pain. Since summer 2011 my hand are involved as well - but still no real pain. I have Raynaud as well and autoimmune thyreoiditis (Hashimoto).

So, the bad news ist: yes, EM can get worse with age, BUT I have it for 6 years now and I still don't experience the burning pain.

Best wishes from Germany

13

Hi Lisa, just curious, did you have Raynaud's before the OBC?

Last night my feet were hot/heavy/red, and they felt burn-y and painful...But I think it was psychosomatic. What are the odds that I would never experience real pain with EM and then all of a sudden start to feel it three days after this post!

I wish the best of luck to those who do experience the pain. It breaks my heart to hear the stories, because I know how often my feet/hands turn bright red, and I can't imagine feeling pain with that every time.

14

> aftertheteacups: hi, so, first im not that liz you mentioned :)

second, yes blue, dark purple, sometimes even black cold as ice, specialy when i stood or sit for a long time (if not flared).

Im speakin in past tence cuz my feet okay since the sympatectomy (GOD BLESS MY DOCTOR!!!) and i hope they gonna stay like that. Still having issues with my hands sometimes and yes, face and ears are my biggest problem these days. But its still much much better than flaring feet.

and just a note to you and Lisa too: are you sure you havin EM? bcuz i always thought (and read) that EM is very painful condition, well my is painful as hell, its like a hot lava on your skin, or like if you put your feet/hands into boiling water.

from Wikipedia: " There is severe burning pain (in the small fiber sensory nerves) and skin redness."

so if you dont feel any pain, just a discomfort i wouldnt be worried about anything, you arent invalidized as most of the ppl with EM here, so yay enjoy your life! :)) btw lotta ppl with raynauds do experience hot/red feet/hands with lil bit of pain but its just a "red phase" of raynauds. so maybe your problem isnt EM just raynauds. the fact is when having raynauds for long year it can turn into really long and painful red EM phases, but in your case id concentrate myself on keeping my extremities warm. After the sympatectomy my feet havent been ever cold again and i can say that they werent even hot, simply still the same temperature. And thats y i think my EM problems started just bcuz of my long year cold extremities. Keep aware of cold water, wear as much layers you can, think about electric-heated socks/gloves when its too cold outside.

>Lisa: do you take any meds for the autoimmune thyr? I do not atm, my hormon lvls are good, just my antiTG and antiTPO is very high.

xoxo, Liz (sorry for bad english again, its long time since i left the school ;))

15

Hi Liz,

Yes, I haven't been properly diagnosed so it is possible that I have no reason to be on the forum. The only reason I wasn't sure if it's the "red phase" of Raynaud's is because I will get the redness/pressure/heaviness/hotness on days when I have not had Raynaud's (like in the summer, when I haven't been too cold in air conditioning or anything. Or even when I have been staying warm in the winter). Often it either comes out of nowhere, or starts when I become over heated (which is often). The redness happens more often that the cold. It is hard to keep the extremities warm because then they often become too uncomfortable.

I have mentioned it to my Dr., but she didn't know what was causing my symptoms. So I have been avoiding bringing it up to her again.

And it's interesting to hear that I'm not the only one who gets those blue/purple feet from sitting. They look like dead people's feet! The first time I realized it wasn't normal was one time that I caught my uncle staring at them, looking horrified. He was like, "Is that ok...?"

And I am thankful to be pain free. My mother has lupus so I have seen first hand how frustrating and exhausting constant pain can be. I guess my question was more, "Could this be the start of something bad?" Thank you for your response and input!

16

I didnt want to be mean or anything, i understand your fears and of course you are welcomed to the forum! :) i just wanted to make it easy and tell you its not that bad :) you know after all i went thru with my EM (3months of no sleep at all) im somehow idk how to say maybe easygoing is the right word, i simply dont get stressed of anything thats not happening atm. so yes, i understand your fears and on the other side, its better to stay fearless cuz ya kno stress is the worst thing and it can trigger any problem. easy to say hard to do right? ;)) try to move/squeeze your feet everytime they get blue, its def bad circulation. btw my EM flares were also in warm days but still i think it was conected to my raynaud's.

17

Hi Liz, I knew you weren't being mean! Sorry, sometimes tone over typing doesn't come out! I think your outlook is great, sorry if you thought I was offended (definitely not offended). I will definitely take your advice about the squeezing (I do try to move them around when they turn that blue color). I think the Raynaud's and the EM (if that's what I have) are connected...it's just hard to tell where one ends and the other begins! Thanks again for your help. I hope you find some relief for you pain.

18

Hi Liz and aftertheteacups,

yes, I'm sure it is EM. I was even diagnosed with it.

BTW, there is another guy in this forum who doesn't experience pain neither. I will have a look what's his name. I think EM can have lots of different forms.

@aftertheteacups: I think I had Raynaud in a mild form before OBC.

@Liz: I have to take thyroid hormones, because my thyroid is too small now.

19

The reason for not feeling pain(or so I've read). Is that EM can go either way, but no pain is more rare. Something to do with how the nerve mutates it either makes the nerves extremely sensitive or sometimes totally insensitive.

I wish I had the latter but I have the former. I'm in constant pain all the time. It's now traveling up my legs and arms which really sucks! I have to have my ankles and wrist supported all the time. Its making driving very painful. The pressure on the botttom of my feet and toes is intense this morning! Eating sucks because I can't eat warm food.

All said I'm trying to keep Liz's attitude. I don't know if anyones familair with Taoism but it's a very stress-free way of living!

- Peace and Love

Danny

20

I have just be diagnosed with EM after suffering for 10 years. /First my feet, hands & face got hot.

Now the pain gets so bad I want to cut my feet off.....

We have changed a couple of my meds & that seems to be helping

Good luck everyone!

Randa :o)