life: super powers not included

Tracey’s Falling Apart: Part 3

Firephoto by heal and inspire

Yesterday I told you some backstory about my condition. Today, the name: erythromelalgia.

So far, the hardest part of having erythromelalgia was the diagnosis. I suspected I had the disease. It’s very rare and under-diagnosed, but my symptoms fit perfectly and I did a lot of googling. Still, it wasn’t real since a doctor hadn’t diagnosed me.

When I went to the vascular surgeon, I wanted answers. I wanted to know why this was happening, why now, and what I could do to get my life back. Here’s what he said:

Yup, you have erythromelalgia. There’s really nothing you can do. Just try to avoid anything that makes your feet flare up.

And he headed toward the door. It took all my strength not to cry in front of him. I made it out of the office, to the car, and through a traffic light before that started.

No cure. No treatment. No answers.

To avoid triggers, I’d have to avoid air over 68 degrees, standing, sitting with my feet on the ground, walking, running, and anything else that involves getting off my couch and lowering my legs.

I was—am—crushed.

I’ve made a lot of modifications. At work, I slip off my shoes and put my feet up under my desk.

At home I keep my feet raised on the couch (putting them on the floor lets blood rush to them). I sit on the counter to make dinner, and The Man takes over when I start to burn. I sleep with a fan on my feet at night, covers only to my ankles. My house stays air conditioned to 68 degrees or lower.

I rush to the couch to elevate after a particularly burn-inducing activity—like showering, washing my face, or standing in the kitchen.

I’ve stopped wearing closed-toed shoes and socks. And as you’ve probably noticed on the blog recently, I’ve stopped going to the gym. It’s been four months since I last worked out. And it burned. (Incidentally, it’s also been months since I walked more than a block or stood for longer than five minutes.)

I know this post is so completely at odds with what my blog is all about. It’s fun. It’s goofy. It’s positive. And yet this is ridiculously depressing.

Next week, I’ll return to normal posting. I’ll probably mention my EM on here, but I’ll leave the depressing stuff with The Man.

In the meantime, are there any questions you have about my condition that I can answer in an upcoming post?

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30 comments

1 Wei-Wei { 09.15.10 at 8:31 am }

Oh, Tracey. My heart goes out to you. I can feel your frustration and desperation coming through in this post… I believe that you will find a way to cope with this and I really hope that you will get better soon. Because it pains me to know that I just don’t know how to respond to this – it’s something that even your doctor said has no cure, and I have nothing to say but I feel so sorry for you.

I hate feeling helpless like this.

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2 Alex @ IEatAsphalt { 09.15.10 at 8:34 am }

I am honestly at a loss with this, I’ve never known anyone to have this condition. You have every right to need some time to cope with this, but do keep your head up. I would probably schedule a second opinion with a new practice. I know thats a pain, but when I was having digestive issues I did that, and by telling the doctor I was doing so he spent a lot more time with me.

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Tracey Reply:

That’s exactly what I’m going to do–find a doctor who will spend some time with me, who will help me get to the bottom of this. In the very least, someone who will spend more than five minutes in the room with me!

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3 Amy B @ Second City Randomness { 09.15.10 at 9:27 am }

I had no idea this condition existed! Or how awful it could be! I’m sorry that it’s gotten so bad. And it must be frustrating to have a doctor that doesn’t have answers. Sure, it’s a very rare condition, but I’m sort of with Alex about going to another practice- they may have more advice for you when it comes to how to deal (other than just get off your feet when it starts to hurt- I mean, really? That’s all he had?).

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4 Heather C { 09.15.10 at 9:43 am }

First of all, I am so sorry you have this to contend with. When I was reading your list of things to not do to make it feel better I was thinking those don’t leave a person a lot of options. What happens in your body to make your feet so painful? Do your bloodvessels swell or something?

I don’t know if this is up your alley or not but when I am going through something tough, I usually find myself looking to a book for some insight. I just read this book called The Pain Chronicles that talks about chronic pain. I found it interesting and it gave me some different ways of looking at and approaching my own pain situation.

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Tracey Reply:

Thanks for the recommendation. I’m going to check it out. It sounds right up my alley!

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5 Estela @ Weekly Bite { 09.15.10 at 11:07 am }

Oh Tracey… I’m so sorry to hear this! I can’t even imagine what you must be going through. We are all here for you! Supporting you!

Let me know if you need anything or I can help in any way… we live close by so please don’t hesitate.

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6 Alina { 09.15.10 at 11:19 am }

I am so sorry to hear about your condition! Now that I’ve read up on it a bit, it sounds like there are some treatments that have shown promise in relieving symptoms, at least partially. So I am kind of disturbed that your doctor just said that there was nothing to be done and walked out without even trying anything first. Have you thought about going to see another doctor and/or a specialist?

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Tracey Reply:

Thanks for the support. I am definitely seeing another doctor! I was shocked at this well-regarded doctor’s brush-off, so I’m seeking out someone who will at least look into treatments, as new or experimental as they may be. :)

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7 Jen { 09.15.10 at 12:27 pm }

Tracey – I’ve followed your blog for a while because I love your writing style. You’re funny and light-hearted usually. However, I think you should be true to yourself. You’re going through a tough time, be honest on your blog. Don’t keep all the “dark stuff” for the Man. That might endanger your marriage for one thing. Plus, we’ll know you’re hiding stuff. I think we’ll still follow you if you share some of your troubles. I think people appreciate honesty above all.

Also – I think instead of holding back your tears with the doctor, you should have punched him in the face! Just my opinion.

Take care…

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The Man Reply:

I totally agree with the face punching idea!

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Tracey Reply:

I like your idea. Note to self: Next time make a fist and aim for the nose. ;)

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8 FoodFitnessFreshair { 09.15.10 at 12:38 pm }

So why is this happening out of nowhere? That’s what I’d like to know. The human body is such a complex mystery. I feel for you girl.

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9 Nichole { 09.15.10 at 3:21 pm }

well, perhaps you can look at it in the way that it is nothing that requires crazy surgery or meds?! I know it’s not that easy, but I am really glad you got checked out.

Perhaps a fun shopping spree for new socks? Sorry mama!

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10 Ameena { 09.15.10 at 4:51 pm }

Oh Tracey – I am so sorry to hear you have this little known disease. I have never heard of it!

I also think you need to find another vascular dr. because this guy doesn’t seem very proactive.

Is there anything you can wear on your feet that would cool them? I mean, don’t marathon runners have special socks or inserts that increase air flow? Sorry if that sounds ridiculous but I just feel like there must be something out there that can help?

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11 Maren { 09.15.10 at 5:00 pm }

Wow Tracey, I am so sorry to hear about this condition. I hope that someday there will be something that can help you to get better. Until then, stay positive! And remember you have such a supportive group of bloggers/readers to help you get through the rough days!

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Tracey Reply:

You’re so right. Everyone is so supportive here! Thank you all.

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12 Sava { 09.15.10 at 5:15 pm }

Awww.
Hang in there.

Sometimes bad things happen to good people.
I am really sorry this happened to you but don’t give up hope for treatment. We’re making strides in science and the medical field every day.

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13 charlotte { 09.15.10 at 5:36 pm }

Eeek, Tracey! I hope you get some better answers and soon. I can’t imagine having to live like that for 1 day, much less the past 4 months! Does it ever just go away or will you have this for the rest of your life? Does swimming bring on the burn?

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Tracey Reply:

I’m not sure if the EM ever goes away entirely. From what I’ve read, it’s a lifelong thing unless you cure an underlying cause. But as for whether or not it’s there all day long: No, thankfully. The burning comes and goes but is worse with activity or at night.

And, you know, I think I might need to take up swimming in cold water!

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14 theemptynutjar { 09.15.10 at 7:23 pm }

Wow. Never heard of it. But I want to give you a big hug. Its crap, isn’t it. All crap.
I hope you find something that will help you out. I’m sure its gonna be a long road ahead for you. But you can do it. You are so “together”.

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15 Jill { 09.15.10 at 8:18 pm }

I hate this. I’m so angry- and so sad that I can’t figure out a way to fix it. I’m sorry, Trace.

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16 Averie (LoveVeggiesAndYoga) { 09.15.10 at 9:31 pm }

Tracey, I am soooo very sorry to hear about all of this! I had no idea! You are a strong woman, bless your heart, and thanks for having the courage to blog about it and share so openly! :)

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17 'Drea { 09.15.10 at 10:58 pm }

You have the right to sort things out on your blog whether what you’re sharing is cheerful or not, IMO…

Hope you find more solutions…

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18 Courtney (Pancakes & Postcards) { 09.16.10 at 3:06 am }

I am so, so, sorry to hear about this. Thanks for sharing with us. You are strong, and will fight this. We are all sending good vibes your way.

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19 Nicole { 09.16.10 at 7:13 am }

Tracy, I am SO sorry. I wish I could give you a hug right now, because I can’t imagine going through that. I feel as though I know you through this blog… I will be praying for you!

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20 Letting Go — i'm (not) superhuman { 09.16.10 at 7:28 am }

[...] hardest thing about my erythromelalgia is having to let go. Thinking of the normal, everyday things I’ll miss simultaneously breaks my [...]

21 Becca { 01.05.11 at 1:36 pm }

Ugh. I know someone who has something similar to this, but hers is mostly in her arms and hands. The swelling and random shooting, almost shock-ish pain? Yep. I don’t think her hands go very red, though… Still not sure what it is. (They thought it was MS, but now they don’t think so.) She’s on meds that kind of ease the symptoms, but it’s not completely. It’s frustrating to not know how to fix it!

And I know by now you’re figured out a little more of the problem and solutions and stuff, but… it’s still not going away completely, huh? Yuck. :(

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Tracey Reply:

I’ve seen a lot of references to MS, so I think the whole nerve part must be related to other conditions like this. I’m sorry for your friend. It’s definitely not fun trying to take this illness down!

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22 Nicole, RD { 06.10.11 at 8:45 am }

I don’t know how I missed this post, Tracey. Hugs…hugs…hugs.

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