I’m 23 and and I live alone in Central Indiana. Recently, I’ve been feeling weak and having stabbing pains alongside my disease, and I had chills briefly the other night, but I think I’m better from that now, having Erythromelalgia really sucks in the sense that I feel so reliant on a fan or water constantly when flareups occur and then even when I’m slightly sick, I feel so hot and cold and uncomfortable and it feels like hell and I just in general I feel so weak compared to others. I often do a lot of moaning and groaning if I’m even just slightly sick.
I also hate that when I try to work out it gets so much worse and so it’s hard to get myself in shape because it triggers flareups. It’s also hard to eat healthy and to be active in general and then with this condition it makes it so much worse, but despite that, I do eat some healthy things sometimes, and I try to walk around the neighborhood sometimes every night, but not always every week in order to get a few thousand steps in at night, especially since I don’t have a job and I’m taking school online. I have some really good friends online that I talk to regularly, but in person, I have basically no one now besides family on holidays, as my parents passed away and I have no siblings. So I’m looking for community and support and resources and treatments and relatable experiences with this rare disease.
I’m here for you. My name is Michelle. I’m in Australia. I’m 56 years old. I’m alone . I have no friends, no family, so I understand. I can’t work because my erythromelalgia has gone so bad. Some days I can hardly walk. It’s not easy . You can write anytime.
Michelle
Hi there. First off, I empathize deeply with the way you’re feeling. The illness becomes overwhelming to manage and it feels like every task is compounded. I was diagnosed 8 years ago- 39 years old. I’m blessed to be married with a toddler. My illness prevented me from having children when I wanted to. I can’t work either and even being home bound with a little one is so much work. Sadly the only reason I’m married is because he loved me before illness and he’s one of the good ones.
I’ve had to learn to manage my flares with so much more on my plate since becoming a mother. It taught me to be more vigilant. I have a wonderful neurologist and he’s the only doctor I’ve learned anything powerful from: I got a small foot pedal machine I started using during my worst flare and did so barefoot. I was told to use infrared heat first for 2 minutes, then ice pack for 2 minutes until I’ve reached ten minutes- then pedal for 10 minutes and have a fan blowing. I worked up to a point where it wasn’t flaring (took weeks). I then began using a recumbent bike with the similar motion and not standing with no shoes.
It’s now been 6 months and I’m able to walk on a treadmill. I immediately have to take my shoes off and use ice packs to stand on but it doesn’t go further. It was a diligent practice. Takes a lot of patience but I’m it able to walk without the horrible burning pain. I still get flares of course but I go back to the original protocol to get back on track! If you have any questions I’m happy to help! I have the link to the machine I ordered off Amazon- it’s not too expensive. It’s worth it!
