My name is Brenda. My sister Nicole wrote on this forum several times last year, after I suddenly got severely ill and it turned out I had Erythromelalgia. You were all very supportive in answering our questions and helping out!
Now, exactly one year ago, I can say that I no longer suffer from EM. I want to tell you here what happened. I will start from the moment the doctors started doing several tests on me. For my story up to this point, please see my previous threads.
After my time in hospital, when I finally could go home and was doing better, they called me up for an EMG (electromyography) test. This is a test with a machine that is attached to various parts of the body, in my case to my hand, wrist, elbow, shoulder, foot, ankle and knee, to review activity in your nerves. The machines gives an electrical shock, and if all is well, your body responds. For example, they give a shock to the shoulder and your hand lifts up. The results were terrible. Basically I had no nerve activity at all. The doctors were shocked. It meant that the connections between my nerves and small muscles were completely destroyed. They did another similar test about two days later, with the medical professor, with the same results.
The professor concluded that the connections between my nerves and small muscles in hands, arms, legs and feet were completely destroyed… They were cut. The professor believed that this happened because of a sudden throat infection I got when returning from a ski trip. The throat infection happened out of nowhere and was very severe (I almost couldn’t swallow or speak), and also disappeared very quickly the next day. It was caused by a bacteria, which was a normal bacteria that would have caused a regular throat ache in other people.
What happened however is that my immune system did not only attack the bacteria, but also my own cells. It went into overdrive. The doctors are not sure why this happened to me, but they said it can happen and does happen somemetimes. My immune system attacked the connections between my own nerves and small muscles. My immune system reacted to strongly that the connections were completely destroyed. All of this triggered the Erythromelalgia. So the EM was caused by the reaction of my immune system and completely secondary.
Once they found out what happened, they admitted they could have given me different medication, had they known this beforehand.
My hands and feet got very thin and I lost my entire fine motor skills. I could not write, grab things, open or close a button, etc. I started doing excercises and going to the ergotherapist to try and regain the movement. Because I am young, there is a good chance that the nerves will try to reconnect to my muscles. Slowly, my hands and feet improved. Now I can write again, open and close buttons, grab things, and do almost everyting. My hands and feet remain weak though, I don’t have a lot of strength in them, and I still have trouble feeling hot and cold. I still have pain in my feet and cannot stand or walk for a long time without an annoying feeling. But I can’t complain. I am basically pain free now, do not take any medication anymore and feel so glad to not have that terrible pain anymore.
Also I am 8 months pregnant of a boy. I am due the third week of April. My boyfriend and I feel blessed with this little present we ended up with.
I hope this may help some of you. I wish you all the best.