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I cannot properly convey how important finding all of you is to me.
I have never known anyone with this awful condition. And I’m terribly sorry for all of you and your suffering.

I have been symptomatic on and off for 17 years. it was misdiagnosed as Raynaud’s, or maybe I have both. The last several months have been terrible.

Over the last last week or two my eyes have been burning and my lids are pink and a bit puffy, my lips also burn and look red, is it safe to assume that these are yet more symptoms of this disease? Has anyone else experienced this?

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Hi. I looked at your details and I see you are using gabapentum. Gapapentum in some patients can cause red itchy eye irritation. Maybe this is worth investigating with your doctor.
Do your feet get worse at night? Has the pain got progressively worse? Any symptoms on hands or face?
It may be helpful for you to know that I have found pregabolin ( lyrica) superior to gabapentum. I also take paracetamol with codeine ( 2 tablets) and tramadol 50mg, all around 5pm each day to sort of settle my system down before night. The prebagolin I take is only less than one 25mg capsule as I screw open the capsule and tip about 15mg out. I also take some magnesium capsules at bedtime and around 0.125mg triazolam. I avoid all alcohol lead a very full and busy life including in the surf and fishing, I am 68.
I’m not saying you should copy me but maybe something will be gleaned by you or someone. Just talking about it or sharing by writing can be medication in a sense. Du courage as the French would say, “ be brave “
Kindest regards.

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I’m trying email, I couldn’t complete my response thru the site.

No it hasn’t spread to my face or hands.
But my most recent “flare” lasted for months. The pain so bad that I was weepy all the time, couldn’t get a sentence out without crying.

Magnesium didn’t agree with my stomach.

I do take Vicodin, and together with gabapentin my feet are much better.

Yes worse at night, I couldn’t sleep. My feet wake me each day still. I experience a hot buzzing - hard to describe, but I can live with it.

Funny that you asked about my eyes- yes, but I didn’t make the connection. I was just prescribed drops for them. I’m hoping it helps.
They are dry and sandy feeling, my lids get a bit puffy and pink. You think this is from drug or the disease?

Such a horrible condition. I’m thankful that you’ve found relief and have returned to living!

I had a failed back surgery, and chronic pain has been dominating my life for so long, I don’t know what it’s like to feel capable any more.

Thank you Kiwi for responding to me.

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BTW, I’m 65 and being brave is what keeps me sane!

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Hey! I have both Raynaud’s and EM. Is your condition worse in the winter? Do you get any chilblains? My pain in the warmer months is horrible but I can sequester in air conditioning. In the winter, though, especially when the temps first really drop, that’s when things get dangerous and out of control. It all feels like EM in a way because the flaring is so insane, but I know that it’s the Raynaud’s, the cold, that’s causing the flare. My EM is secondary to the Raynaud’s, which I didn’t realize for a long time.

I know I have to be so careful in the winter so that I don’t, ya know, lose any toes or fingers. But it is impossible for me to avoid the chilblains and severe painful flares.

So sorry! You’re not alone.

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Hi Monkey,
So funny, that’s what we’ve called our son since he could walk (climb, leap etc) he was one of those Tarzan babies.

And your timing. I am certain I have both, woke this morning with one, chilblain, honestly I didn’t know their name (thank you) had them on all toes many years ago, but they hadn’t reoccurred until today. The last few months have been Absolute torture. Mostly EM, the burning unbearable- couldn’t sleep or function due to the pain. And until I found a good dermatologist I’d never heard of EM.
But i somehow knew it wasn’t Raynauds. The diagnosis helped my mental health, I was scared. Now I’m “deeply concerned” I don’t know where you live but here in NJ the temps were so low there were frostbite warnings.

I must admit, I don’t know what to do, EM -keep them cool, Raynauds warm. I’m afraid to flare one by caring for the other.

How do you cope, and what do you do for your toes?

I’ve gotten relief from EM with gabapentin, but I hate this drug, I have history with it.

I was on Cymbalta for 10 years due to a failed back surgery, it petered out - or so I thought - I went off because it wasn’t helping me with my back pain any longer, and EM started soon after - coincidence?

I don’t know you, but I’m so sorry for your suffering!!! And so thankful that you reached out to me.

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Well, yeah, caring for my feet and hands is like a full time job on top of my work. It’s so complex, but a lot of schlepping of various shoes, socks, sandals, etc. if I go anywhere. I’m really limited that way.

You’re absolutely right: how do I protect them from the cold when they’re burning?

I took Gabapentin for a few years and those might be the very worst years in the 23 or so that I’ve had these issues (I’ll be 50 in May). I have tried all the meds and mainly either had no effect or negative side effects. Some of them, including Gabapentin, I have like major anxiety around—PTSD ish from the horriblenesses.

I have a pet theory that pentoxifylline set off my EM, but I’ll never know for sure.

I live in Sacramento. It does get in the 30s and 40s, which is cold enough to cause all kinds of problems for me. And in summer, it’s normal to be high 90s to 100s, so it’s pretty much year round awfulness.

I have a growth mindset and I do a lot of adjusting but I went through about a decade of real darkness, including suicidal ideation and absolute misery. I saw a pain management therapist for a couple years and I’ve learned how to manage better. I work from home now but I might be starting a PhD program next fall at Davis, so that’s a thing. I haven’t tried to do anything new, take any risks, for years, so it is just time to at least try. Life during COVID taught me that anything is possible.

I do think that for me, the EM is like a result of the Raynaud’s. Like my body just decided to remain in a constant flare state in a way. My hands and feet are never normal looking. Not even close. I also developed eczema, which sort of seems related.

November and December were torture for me too. I do think that if you’re like me, it’s the Raynaud’s and then the EM is a side effect. Permanent for me. That’s how I see it.

I bet your son is awesome. :blush: Wishing you the best with your pain management. Classes start (I teach) next week so lots of prep and meetings. Take care!

Eve

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Eve I applaud you!
Going back to school and adding additional accomplishment to your life is a wonderful thing. And I believe it will be helpful to your mental health- nothing like feeling proud of yourself!

I can’t imagine having it in both hands and feet. Though I understand the agony of multiple sources of pain. For me it’s my feet, and my back, which is fused from my bra strap to the end of me. A 13 hour operation that failed completely and left me in unending pain.
(So many meds, I hate them all.)

That was 8 years ago after 7 years of agony.
No two doctors had the same “opinion” about how to fix me. I had scoliosis, though I didn’t know until I was close to 30. It’s the kind that happens with the growth spurts of puberty- funny since I’m only 5’ tall.

There isn’t a single procedure or treatment I haven’t tried. But I’ve consumed the list, there’s nothing left. My feet were the icing on the cake - so to speak.

I’m 65, I have two boys, my sun and moon.
My love for them helps me a lot. They are now 21 and 23. (Yes I started late) I wasn’t supposed to be able to have them - DOCTORS!
I have lost all faith in them.

I’ve been on permanent disability since the surgery, but prior to that I had a career in corporate/marketing communications and graphic design. I loved every minute of it.

These days I keep myself stimulated with poetry writing and I’m a decoupage artist.
Something I started when the boys were little.
They are both very therapeutic for me.
As I assume/hope returning to school will be for you!

What do you teach?

I’ve scheduled a trip to Florida to visit my
92 year old mother in her nursing home. Leaving February 8th for a week. My husband thinks I’m crazy and not up to it. But I’m counting on my adrenaline to kick in. I need to see her, and I need for her to know she hasn’t been abandoned. Though we speak daily. I’m hoping the weather will be kind.

You seem like a lovely person- I wish you success!

Leslie

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Hi Leslie & Eve,
Haven’t been on this site for about a year. I’m sorry to hear you both are suffering. I started getting burning feet almost 20 years ago, but it was managed with Elavil. About 15 years ago, it got worse but NO ONE knew what it was. (I’m in Toronto, Canada). I finally diagnosed myself from Google, then found a Dr. to verify it. Making sure I’m not in temps above 70 helps and the Elavil has always worked for me. But I can’t walk or be on my feet for more than half hour so I’ve managed my life around that. It’s amazing what we get used to when we have to!
My sister has Raynaud’s & I got EM. We both figured out my mom had EM, but we never named it. She just complained that her feet felt like they were on fire. So definitely genetic!
I’m sorry you’re both going thru so much. People who don’t have any chronic pain can’t imagine what we deal with!
I happen to be in south Florida right now. I assume Leslie, you know Covid is very BAD here. I It’s terrible that you haven’t been able to see your mom in so long, but think about your travel date. Florida doesn’t take Covid seriously. Everything is open and people don’t even wear masks. We’re pretty much keeping to ourselves and going to pool. You might consider delaying for a couple of weeks as they expect the numbers to start going down. Will they even LET you visit your mom in a nursing home now?? In Toronto they won’t.

Look after yourself ladies, this isn’t an easy thing to deal with.
Lynn

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So nice to meet you Lyn, but under such awful circumstances!

I feel your pain too. No one knows what to do for it really, if you can find someone who even knows what it is. I’ve read thru the site, it seems like everyone does something different.

I had an allergic reaction to elavil, had to go off. Though I do think its a good drug. Took it many years ago for chronic migraines and it changed my life. They were hormonal so eventually menopause and a hysterectomy ended them. But bodies do change.

And like Eve, I hate gabapentin, though it did help the fire, I’m going to stop, not sleeping and very sad/weepy and confused. Was hoping it would pass but I know it won’t. It destroyed my ability to think when I took it many years ago for my back.

About Florida, my reservation was for
January 7, but due to airline chaos, the pandemic, which is worse here in NJ than Florida now, and my feet, I’ve postponed until February 8th.

I went thru a year when the nursing home was entirely shut down to visitors, I saw her this past March and the rules are the same now. You have to be tested, they do it there in reception, and then take your temperature before entering. And of course masks are mandatory. I know Florida is ridiculously lax in prevention, thank that ignorant governor!

Saw dermatologist yesterday because of a sore on my toe. She said it’s not a chilblain, but an infection and gave me a topical antibiotic. I’m not sure she’s right about infection, years ago during my worst flare I had sores on all my toes, so I wanted to prevent that from repeating. Who knows maybe antibiotic will help.

Thanks for your concern and advice about Florida. Mom is 92, and I don’t really think I have much of a choice. Covid will not be over anytime soon. I’m vaccinated and boostered…

Be careful, stay out of indoor settings etc.
I’m sure you know what to do.

Be as well as possible- both of you.

Leslie

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What, if anything do you know about ketamine infusions?

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Hey Leslie,

So much I connect with in your email. I’m so busy—school starts Monday. And, of course, I’m flared up, got some new chilblains, etc. so gotta keep it short, but I just wanted to be sure to say I appreciate you. Thank you for sharing.

I’m trying to keep working but, as you know, work, just the effort of it all, causes so much flaring with my feet and hands. It’s a struggle, even teaching from home. Thank you for your supportive words! Just nice to have someone who gets it cheer me on.

I’m also a creative writer! Fiction mainly. Eventually, my book will be published (likely by me). It’s “done” but this summer I want to really strip it down. It’s bloated if ya know what I mean. I love that you’re a poet and an artist. I’m sure your sons are proud of you. You all sound super close. And you weren’t even supposed to be able to have them! I know too much about that…

So sorry about the scoliosis and back surgery. My sister has scoliosis too. Your experience is so intense! I have a herniated disc, but, yeah, nothing like what you deal with.

You’re the awesome one! You keep going too.

Sending warm hugs,
Eve

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And, yes, you gotta see mom. You got this!

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