This page is for historical purposes only!!! I had Erythromelalgia for 4 years, and I finally fixed it!!! It was the absolute worst thing that has happened in my life, and I wrote a book on my treatment protocol that resolved my pain. If you would like to see this book on Amazon.com, click here to see it :)
Erythromelalgia
Hi everyone and welcome to my site! It is made to show awareness for erythromelalgia and give a look into what it is like to live with the horrible disease.
Every day I wake up feeling like my feet and legs are on fire. I force myself to wake up and get out of bed and quickly dunk my feet in the water that I keep next to my bed. It instantly feels like the fire is being put out, but at a price. To put out the fire feeling I have to change my bodys temperature drastically and it feels horrible. The instant I touch my feet to the cold water I cringe because of the painful cold sensation I have to suffer through. But.... its way better than feeling the fire. The fire is horrible. It feels like a chemical burn all the way down to the bone. I feel this every day and it drives me crazy.
After about 30-40 minutes of dunking my feet in cold water, I stick them under a fan for even longer. When the water leaves my skin it makes my feet feel even colder. I do this on and off until my feet feel literally like ice cubes, and they are black/purple at this point. This is when I can walk. And this happens every single morning, and every time I try to walk, and everytime I get to warm. I have erythromelalgia and this is my life. I follow shadows, jump in freezers at the store, anything to stay cold. If Im not cold, Im on fire, and its the worst feeling Ive ever felt in my life.
After about 30-40 minutes of dunking my feet in cold water, I stick them under a fan for even longer. When the water leaves my skin it makes my feet feel even colder. I do this on and off until my feet feel literally like ice cubes, and they are black/purple at this point. This is when I can walk. And this happens every single morning, and every time I try to walk, and everytime I get to warm. I have erythromelalgia and this is my life. I follow shadows, jump in freezers at the store, anything to stay cold. If Im not cold, Im on fire, and its the worst feeling Ive ever felt in my life.
How did this happen? Were your feet always like this? No! I used to be completely normal...
Before I had this horrible disease, I was an extreme sports athlete. I coached and practiced gymnastics every day. I surfed every single morning, even if it was raining/freezing (literally). I had the best life ever, and I told myself this every day. I also was working for the city as a lifeguard and taught little kids how to swim. I rented a room and rode my bicycle to work and school every day. I was in college and was working towards a bioengineering degree. The perfect life, in my eyes.
Then I tore my plantar fascia. It is a big ligament on the bottom of the foot. I was devastated! I couldn’t do any of my sports, and it hurt to walk. I went to a doctor, and he said just to "ice it" and "rest." This did nothing, and it got worse, much worse. I tried everything I could to fix it, and nothing seemed to help it at all. After four months of dealing with this pain, I followed my doctor’s orders, stuck my foot in a cast and waited for it to heal. It was a hard five months of no walking, and when I could walk, it wasn’t fixed. I didn’t know if I would ever be able to walk normally again. This whole time, my ex-girlfriend used her college savings and income to pay for rent and food. We lost all of our money. I had a van at the time for surf trips, so we both moved into the van. Shortly after I took off the cast, my foot started to burn. This burn slowly spread over to my other leg and up my legs toward my stomach. It also started burning my hands, and I didn’t know what was happening. I broke up with my girlfriend and focused on trying to fix my condition. I went to Canada for something called "shockwave therapy," and it helped my torn ligament!! But my feet seemed to get worse. The burning pain was spreading and becoming more extreme every day. And on top of that, the trip to Canada was paid for with a student loan. I didn’t mind being in debt if I could walk for ten minutes instead of five. I was just trying to survive. No money and having an incurable disease do not mix well.
My doctor in Canada said that I probably had something called "CRPS" and that he had a patient with pains similar to mine. I studied the disease and noticed that it involved an intolerance to cold. My case was the opposite—I had to be cold 24/7. I searched and searched until I came across www.erythromelalgia.org. This site had pictures of other people with erythromelalgia and I thought, That’s me!!! By this time I had already gone to more than twenty doctors (I had medi-cal insurance at the time, because I am homeless and my mom is mentally disabled; that ended when I turned 21, since I no longer qualified.) and none of the doctors had any idea what was wrong with me. I was sent to UCSF to see a specialist, but he couldn’t do anything. He prescribed medications that did not help and pretty much gave up on me. On top of all this, I was having killer shoulder pains. After I noticed I couldn’t walk, I used my arms much more. I worked out and did more gymnastics with just my arms than ever before. Even though I couldn’t walk, I thought, That’s not going to stop me—I must push forward. Worst mistake of my life! I got an MRI that showed I had torn 180 degrees of my labrum (cartilage inside the shoulder joint) off and that they couldn’t do surgery because it would make my erythromelalgia worse. I already couldn’t use my feet— and now my shoulders were killing me, too.
My mom has PTSD. She became that way because my sister had aplastic anemia (I said leukemia the first time I wrote this site, because I figured that no one knows aplastic anemia) for two years. (This is another long and tragic story.) Anyways, one of her friends down in Los Angeles was going to jail, and he had an RV. My mom’s boyfriend fixed it up, and they drove it up to me and gave it to me for free. Yayyyy!!!! This was much more ideal than living in a van, which I had been doing for a whole year. That was tough. Having torn shoulder labrums and trying to crawl around inside a van was a very painful task. The RV allowed me to stand and move around and still be cold.
My shoulders got worse, and my feet got worse, but I got the shoulder surgery. This is now where the darkest part of my life started. The day after the surgery, I started noticing that when I tried to get cold, I couldn’t. I used the one arm I had to drive myself desperately to the beach in an emergency to get myself really cold. It didn’t do anything. I couldn’t get cold, and the fire was starting to crawl up my legs. It was making me go into shock, because I was in screaming pain. It was the worst pain I had ever felt. I went straight to the ER with the last bit of energy I had. I was there all night while nurses put ice packs all over my legs and feet with fans pointing at me. They tried a ton of drugs in the ER, but it did nothing. Then my mom came to the hospital and saw that they couldn’t do anything to help me. We drove out of there, and I stuck my feet out the window of her car on the highway while putting ice water on them. They finally became cold. This kind of flare-up happened for a few months every single day. I wanted to jump off a building because the pain was so bad. I did not care about anything except getting rid of the pain. Try to imagine yourself on fire. It hurts. Anyways, I slowly began to walk and have fewer flares after five months. I could finally walk for ten minutes. That’s all I needed to keep sane.
It’s hard to have this condition and deal with it when you’re homeless. I am always trying to find ways to get money and food. I usually will beg for gas when people walk by my RV, and most of my food is from a local homeless shelter. I have tried to get SSI three times, and I have been denied every single time. I have signed up for vocational rehab and am waiting for a call back now. I would love to work, but I have no idea what job I could possibly do with my condition. If you have any ideas, I would LOVE to hear them.
Nowadays, I just stay cold and inside my RV. I do push myself to walk more, but if I do too much, I will have flare-ups for weeks after. All it takes is one bad flare-up from walking through a store, and the next week or so I will be in flare-up mode nonstop. I can’t drive my car for the most part, because my shoulder surgery didn’t heal and my other shoulder still needs surgery. So friends drive me around to get food and other necessities. I have a private mailbox so that I can receive mail. My RV's only electrical power source is from solar panels on the roof. They charge my car batteries, so that I can have fans blowing on my feet. Some ask me, "Does it hurt right now?" and yes, it constantly hurts. I’m always feeling like I’m about to "flare," and if I push anything too much, I will have a flare. This makes it very difficult to get better. And it’s really hard to keep my feet always cold. I always push myself to go as far as I can go, but my body literally stops me and it’s impossible to do any more than what the erythromelalgia lets me. I always try to keep a positive outlook and find new and different ways to live, but the limits erythromelalgia set on my life are extreme and constant.
When it hits 70 degrees, my skin is boiling. If I walk for more than one block, my feet need to be re-frozen again. I cannot sit anywhere with my shoes on. The instant I sit down, my shoes are off. When I see a cold, concrete corner outside that the sun hasn’t hit all day long, I’m instantly there with my shoes off, absorbing the cold. I see the importance in moving and trying to push through the pain, but once I hit a flare, it’s like hitting a brick wall with my activity. I cannot walk any further when my feet flare, if I have true pain. This pain is so intense and so painful that it makes any other pain I’ve had seem like a joke. I would rather get punched in the face than feel a chemical burn on my heels. The problem is that this pain is always here—now while I type this, and all day, every day. I do still have hope and have read about people being cured completely back to normal, but I surely do not count on it. Hope is not something that I accept with having this disorder. Most people will say, "It’s going to get better," but that’s not always true. Some things can’t be fixed, and some things in life do just keep getting worse. Once you have something like erythromelalgia long enough, there is no such thing as hope, but what comes instead is survival. I am only trying to survive. I do not care what people think about my feet when I take my shoes off each time I sit down and my feet look black. I do not care when people give me nasty looks when I come out of my RV. I do not care how others feel when I say I cannot see them when they want to hang out with me. I care about being cold. I need to survive. I feel like erythromelalgia has taught me to do what matters most for me. But at the same time, I feel a billion times more empathetic to others with erythromelalgia and CRPS and other chronic pain syndromes. Accepting that you are screwed is such a valuable thing in and of itself. I do accept that I will die and that this pain will be over one day no matter what, whenever that day comes. In the mean time, I MUST STAY COLD! :)
Then I tore my plantar fascia. It is a big ligament on the bottom of the foot. I was devastated! I couldn’t do any of my sports, and it hurt to walk. I went to a doctor, and he said just to "ice it" and "rest." This did nothing, and it got worse, much worse. I tried everything I could to fix it, and nothing seemed to help it at all. After four months of dealing with this pain, I followed my doctor’s orders, stuck my foot in a cast and waited for it to heal. It was a hard five months of no walking, and when I could walk, it wasn’t fixed. I didn’t know if I would ever be able to walk normally again. This whole time, my ex-girlfriend used her college savings and income to pay for rent and food. We lost all of our money. I had a van at the time for surf trips, so we both moved into the van. Shortly after I took off the cast, my foot started to burn. This burn slowly spread over to my other leg and up my legs toward my stomach. It also started burning my hands, and I didn’t know what was happening. I broke up with my girlfriend and focused on trying to fix my condition. I went to Canada for something called "shockwave therapy," and it helped my torn ligament!! But my feet seemed to get worse. The burning pain was spreading and becoming more extreme every day. And on top of that, the trip to Canada was paid for with a student loan. I didn’t mind being in debt if I could walk for ten minutes instead of five. I was just trying to survive. No money and having an incurable disease do not mix well.
My doctor in Canada said that I probably had something called "CRPS" and that he had a patient with pains similar to mine. I studied the disease and noticed that it involved an intolerance to cold. My case was the opposite—I had to be cold 24/7. I searched and searched until I came across www.erythromelalgia.org. This site had pictures of other people with erythromelalgia and I thought, That’s me!!! By this time I had already gone to more than twenty doctors (I had medi-cal insurance at the time, because I am homeless and my mom is mentally disabled; that ended when I turned 21, since I no longer qualified.) and none of the doctors had any idea what was wrong with me. I was sent to UCSF to see a specialist, but he couldn’t do anything. He prescribed medications that did not help and pretty much gave up on me. On top of all this, I was having killer shoulder pains. After I noticed I couldn’t walk, I used my arms much more. I worked out and did more gymnastics with just my arms than ever before. Even though I couldn’t walk, I thought, That’s not going to stop me—I must push forward. Worst mistake of my life! I got an MRI that showed I had torn 180 degrees of my labrum (cartilage inside the shoulder joint) off and that they couldn’t do surgery because it would make my erythromelalgia worse. I already couldn’t use my feet— and now my shoulders were killing me, too.
My mom has PTSD. She became that way because my sister had aplastic anemia (I said leukemia the first time I wrote this site, because I figured that no one knows aplastic anemia) for two years. (This is another long and tragic story.) Anyways, one of her friends down in Los Angeles was going to jail, and he had an RV. My mom’s boyfriend fixed it up, and they drove it up to me and gave it to me for free. Yayyyy!!!! This was much more ideal than living in a van, which I had been doing for a whole year. That was tough. Having torn shoulder labrums and trying to crawl around inside a van was a very painful task. The RV allowed me to stand and move around and still be cold.
My shoulders got worse, and my feet got worse, but I got the shoulder surgery. This is now where the darkest part of my life started. The day after the surgery, I started noticing that when I tried to get cold, I couldn’t. I used the one arm I had to drive myself desperately to the beach in an emergency to get myself really cold. It didn’t do anything. I couldn’t get cold, and the fire was starting to crawl up my legs. It was making me go into shock, because I was in screaming pain. It was the worst pain I had ever felt. I went straight to the ER with the last bit of energy I had. I was there all night while nurses put ice packs all over my legs and feet with fans pointing at me. They tried a ton of drugs in the ER, but it did nothing. Then my mom came to the hospital and saw that they couldn’t do anything to help me. We drove out of there, and I stuck my feet out the window of her car on the highway while putting ice water on them. They finally became cold. This kind of flare-up happened for a few months every single day. I wanted to jump off a building because the pain was so bad. I did not care about anything except getting rid of the pain. Try to imagine yourself on fire. It hurts. Anyways, I slowly began to walk and have fewer flares after five months. I could finally walk for ten minutes. That’s all I needed to keep sane.
It’s hard to have this condition and deal with it when you’re homeless. I am always trying to find ways to get money and food. I usually will beg for gas when people walk by my RV, and most of my food is from a local homeless shelter. I have tried to get SSI three times, and I have been denied every single time. I have signed up for vocational rehab and am waiting for a call back now. I would love to work, but I have no idea what job I could possibly do with my condition. If you have any ideas, I would LOVE to hear them.
Nowadays, I just stay cold and inside my RV. I do push myself to walk more, but if I do too much, I will have flare-ups for weeks after. All it takes is one bad flare-up from walking through a store, and the next week or so I will be in flare-up mode nonstop. I can’t drive my car for the most part, because my shoulder surgery didn’t heal and my other shoulder still needs surgery. So friends drive me around to get food and other necessities. I have a private mailbox so that I can receive mail. My RV's only electrical power source is from solar panels on the roof. They charge my car batteries, so that I can have fans blowing on my feet. Some ask me, "Does it hurt right now?" and yes, it constantly hurts. I’m always feeling like I’m about to "flare," and if I push anything too much, I will have a flare. This makes it very difficult to get better. And it’s really hard to keep my feet always cold. I always push myself to go as far as I can go, but my body literally stops me and it’s impossible to do any more than what the erythromelalgia lets me. I always try to keep a positive outlook and find new and different ways to live, but the limits erythromelalgia set on my life are extreme and constant.
When it hits 70 degrees, my skin is boiling. If I walk for more than one block, my feet need to be re-frozen again. I cannot sit anywhere with my shoes on. The instant I sit down, my shoes are off. When I see a cold, concrete corner outside that the sun hasn’t hit all day long, I’m instantly there with my shoes off, absorbing the cold. I see the importance in moving and trying to push through the pain, but once I hit a flare, it’s like hitting a brick wall with my activity. I cannot walk any further when my feet flare, if I have true pain. This pain is so intense and so painful that it makes any other pain I’ve had seem like a joke. I would rather get punched in the face than feel a chemical burn on my heels. The problem is that this pain is always here—now while I type this, and all day, every day. I do still have hope and have read about people being cured completely back to normal, but I surely do not count on it. Hope is not something that I accept with having this disorder. Most people will say, "It’s going to get better," but that’s not always true. Some things can’t be fixed, and some things in life do just keep getting worse. Once you have something like erythromelalgia long enough, there is no such thing as hope, but what comes instead is survival. I am only trying to survive. I do not care what people think about my feet when I take my shoes off each time I sit down and my feet look black. I do not care when people give me nasty looks when I come out of my RV. I do not care how others feel when I say I cannot see them when they want to hang out with me. I care about being cold. I need to survive. I feel like erythromelalgia has taught me to do what matters most for me. But at the same time, I feel a billion times more empathetic to others with erythromelalgia and CRPS and other chronic pain syndromes. Accepting that you are screwed is such a valuable thing in and of itself. I do accept that I will die and that this pain will be over one day no matter what, whenever that day comes. In the mean time, I MUST STAY COLD! :)
Here is my current home
This is the RV I got for free, and the writing is what I have posted on its door.
Someone else with my condition, on T.V. for it!
People were asking me questions on if im really in college and if my gpa really is what i said it was. Here is my transcript as of 9/9/2012:
These classes are very hard for me to do with my situation. My tution is luckily paid for because my mom is mentally disabled and I get the BOG fee waiver through the state of California due to her illness. The hard part about school is being able to sit in the classroom. They are always too warm for me, and I always have to leave early or take breaks to get cold outside. I take only night classe so that it is colder outside (thank god its cold where I live). I also depend on my friends to drive me to school because of my injured shoulders. (I can't take the bus because it is to warm). I feel that going to school gives me "purpose" and that is EXTREMELY important when fighting erythromelalgia, in my opinion. It also gives me homework to do when I'm stuck in the RV staying cold all day. This is great for preventing me from going crazy, which can happen from time to time when I'm stuck in the RV being cold for extended periods of time. I also can read forever now that I can not walk very far. I feel that my brain is the one thing that is most important to me, and will hopefully get me out of this mess.
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