Does it ever get better?

General Erythromelalgia 101
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I’ve had EM for three years. It started in my toes. I thought it was due yo my fibromyalgia. I just lived with the pain , thinking There was nothing I could do.

In April it moved into my ankles causing the pain to explode! I was finally able to see a doctor last week who prescribed Tegratol. I thought I had hope, but now it’s in my knees, and with weather heating up I can’t sleep more than thirty minutes before needing to soak my feet. The pain at night is so much worse at night that I can barely stand with the aid of crutches.

I’m frightened, alone, and I don’t want to live like this. I don’t think there is hope.

Does anyone get better?

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Roo, so far everything I’ve read doctors aren’t sure what causes it. They treat the symptoms and so far that’s all. I’ve had this for two years and it started with the bottoms of my feet burning when I exercised and eventually as of now it is to my knees with my cheeks turning red occasionally when I get to hot. Now when my legs and feet are a little cold they turn bluish purple. I can only stay on my feet about an hour before they flare up with pain and I have a small fan and also a ceiling fan that I cool them with as I elevate them with a wedge pillow which helps a lot. I’m 54 and if I was born with this it never showed its ugly head until now. I am a Christian and I can’t help but feel what the woman with the issue of blood must have felt for 12 yrs. She spent all her money on doctors who could not help her but then there was one who changed all of that after 12 yrs JESUS and I’m praying that the issue I have with EM he will see fit to heal me one day. And if it’s not his will then to help those who can help us live or be cured from this ugly issue. Ok, until then how I cool my legs and feet are what I stated above but I also use VITALITY Aches and Pains Essential Oil Balm which is made with beeswax and Essential oils number one being my favorite Frankincense I figure if it was good enough for a king to bring it baby JESUS then it will be good enough for me and I will have to say the balm helps ALOT. I also use VITALITY Three Kings Essential Oil Blam which also has Frankincense, Myrrh and Sandalwood which is amazing as well. I pray this helps you and know you are not alone and I pray for a healing for you and I or a break through for a cure. God bless​:folded_hands:t2:

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Thank you for your suggestions. I just ordered a wedge pillow.I’m surprised I didn’t think of think of it before. I too use a small fan blowing on my feet to try and keep cool, and at times a very red face! It always embarrasses me so much. I don’ t like anyone to see me like that because some people are pretty judgemental. If I explain they tend not to believe me because they never heard of it.

Having people draw away, or think you’re lying about the pain for pills is as bad as the pain it’s self. It is hard to be left alone when you want understanding. Thank you for taking away a little of my pain. I hope yours gets better too!

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You’re so welcome and I know how you feel about the embarrassment although I think the bluish purple color when they are cold embarrasses me more than the red. In the summer time a lot of times people think my feet are sun burnt. lol but yes I sleep with the pillow which helps me most nights. I’ve seen 4 doctors and they all except my PC doctor looked at me like I had leprosy. It’s definitely life changing.

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Hang in there is the best thing I can say. You have the same emotions that all of us have. I have had it 8 years and tried all kinds of protocols. I will just jot down some thoughts:

There are two basic variants: Primary and Secondary. Primary is inherited and usually responds well to high dose aspirin. Secondary - who knows. Mayo Clinic (I have been there) calls it a neuro vascular disorder (that means they don’t know what causes it). While I was there they did a battery of tests trying to isolate it.

It rarely disappears. There are something like 5% of cases that spontaneously disappear annually. I keep praying for that.

You mention that cold water provides relief. Be careful with that!! I soaked way too long and too many times initially. My feet became full of sores and fissures. And, Erythromelalgia (EM) does terrible things to my feet regardless of what I do. I have a message from Mayo stating that I could soak many times a day but only for short durations.

To me, sleep is the biggest thing that you need to deal with. And I have found (like everybody) there is no silver bullet. I tried compounded creams (Mayo likes those - didn’t help me much). I finally settled mainly on pharmaceuticals. I have found that a combination of two is best; three drugs is no better than two. The drugs are Pregabilin (Lyrica) and Amitriptilene. I also use RX strength lidocaine pads (5%) to help with sleep. They can be used 12 out of every 24 hours; I use mine from 11 pm to 11 am.

I think bedding is important. My top sheets and/or blanket/quilt are lightweight. I pull the ends about 6 inches up from the bottom so my feet can be uncovered. I also frequently let my feet hang off the end of the bed. I also don’t put the sheets under the sides of the bed so I can hang my feet off one side at a time.

Fans can be very important; but again don’t abuse them. I have 3 little Vornado fans arrayed around the end of the bed. They work well but they are very drying; so I only use as a “for emergency break glass” situation. But I also have a large ceiling fan that I run 24/7. And the thermostat is set on 68 during the day and 67 during sleep. My windows are totally blacked out and I have great reflective coverings. My wife rarely goes into the bedroom because it is too cold for her (it IS cold). I would move to the arctic if I could.

Lastly having a good doctor helps. I found my doctor through this website. You will not find an EM genius. My doctor has 13 patients and is 2 1/2 hours away in another state. He has gotten very educated about the disease. He is probably breaking laws, but he will tell me if something is helping his other patients and he asks if I want to try it. He was instrumental in me settling on my current protocol.

Good luck and feel free to direct questions to me if you want.

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I believe it’s caused by a mutation in the SC9NA gene so doctors do know what it’s caused by if it’s hereditary, or primary like mine is, as I have struggled with it my whole life for decades. There probably are medical explanations or if it’s secondary and happens later in life too.

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Hi Roo,

I can identify with the feelings you are having. I am just entering my third year on this journey. What I have discovered are a few things: Better is a relative term - I still have pain and flare ups, but they are no longer so severe that I honestly considered foot amputation. For me better isn’t “cured”, just not as bad.

There are things that can help, but every person is different, and so the things that help are different, so it takes gritting teeth and lots of perseverence to get the doctors to actually do the investigative work to help. Most doctors I have met have heard the word EM, but know nothing about it or how to work with it. It’s going to be a lot of trial and try again.

I hope you can find some mental health support as well, as the stress and pain can take a real toll. Finding ways to work on mindfullness is important - checking out meditation and mindfullness videos on YouTube can possibly be helpfull.

You have discovered there are others out there like you, who know what you are going through, and will share what works and doesn’t work for us. Again everyone it different, from the cause, the the triggers, the reaactions, the location on the body, to the kinds of pain we feel.

I hope you will find what works best for you.

For me - I take Lyrica (pregabalin) and nortriptyline. I take vitamin B12 and D3 as well. I also have a spinal cord stimulator implant, but for me it is used to mask the nerves rather than directly work on the pain.

This has gotten me through the worst of my pain and to a ponit where I can do more than exist and try living again. Little steps, little victories. My feet are where it hit me. so red they look sunburnt or sometimes blue and purple. The poor blood vessels don’t know if they should be openened up or closed down, and there doesn’t seem to be an in-between. But I still spend most of my day sitting in my recliner with my feet up and a fan blowing on them. I use Amalactin lotion on them to help with the dryness.

I will say be very careful when soaking in water. I found using waterproof foot coverings can help prevent a lot of the damage water can cause the skin of the feet when soaking. Don’t use ice water! - that can cause more damage and perpetuate a nasty downward spiral.

I hope you find your path to “better” whatever that looks like for you.

Brett-