I joined this forum because my sister was diagnosed with erythromelalgia 5 weeks ago.
She is 22 years old and her symptoms started about two months ago. In the beginning she would just complain about a strange feeling in her toes when she was playing table tennis, but it got worse very quickly. She figured out that cooling her feet helped, so we would give her ice bags to help with the pain. However during the night her toes would hurt even more and the ice bags didn’t help enough. Because of that she had to get out of bed and soak her feet in cold water every hour. As you can imagine she was completely exhausted after a few days.
We went to different doctors and specialist to find the cause of the pain. The fifth specialist, her neurologist, took one look at her feet and immediately diagnosed her with erythromelalgia. He admitted her in the hospital to run a lot of tests and started to treat her.
He is convinced that her erythromelalgia was caused by a medicine she has been taking this year for rheumatism, which she was diagnosed with when she was 14. It is called Golimumab (the brand name is Simponi) and she had to inject it once a month. She stopped injecting this medicine and her neurologist says the erythromelalgia will go away once the medicine is out of her system. This can take several months and in the meanwhile she was in a lot of pain, so he also started to give her other medicine that could help against the pain.
The first medicine he gave her was aspirin, which didn’t work. After that she got two different types of lotions. One lotion had some kind of narcotic in it, but she didn’t feel any difference. The other contained peppers and made her feet feel like they were on fire. We ended up soaking her feet in milk to try and neutralize this lotion. She also has gotten a lot of morphine which made her tired and see things that weren’t there, but didn’t help against the pain. Finally she got a pain pump that injects pain medication based on morphine in her spinal cord. In the beginning she didn’t feel any pain anymore. She didn’t even feel her feet and legs properly anymore, so she couldn’t walk.
Now, about three weeks after she got the pain pump, the pain is worsening again. She also had a high fever yesterday and was having some kind of hallucinations. Because of that we are afraid that she has gotten an infection on the catheter. Because it goes into her spinal cord such an infection could turn into meningitis. They did some tests, but decided not to remove the catheter, so I guess she doesn’t have meningitis (yet).
At the moment she is still in the hospital and she will not be home during the holidays, which is very hard for her. Because of that we are trying to cheer her up by getting a lot of Christmas cards for her. I think she would like it, if she also got some cards from people who understand what she is going through.
Also, if you have any tips that could help against the pain, I would be very grateful to hear about them.