Thank you so much for your reply. It makes me feel so much better that someone else knows what it’s like. Next time I see any of my doctors I will ask them if they have had time to do any research. (And shame on them if they have not). But I have to keep trying and asking. Some doctors never heard of it. I just want to scream and say well, look it up! Mine is all day every day as soon as I am up. Whenever my feet are below my heart. I am forced to spend at least 20 hours a day lying down, icing and elevating. It is getting so much worse quickly.
I also wanted to ask do you live in Florida? Or in a warm state? Now that the days are getting warmer the pain is even more intense because warmth increases the pain. I am better off in the winter when the floors are cold.
Also, I just started on a new medication called Pentoxifylline . It works by increasing the viscosity of the blood cells. I read that this can help a few people, it prevents the blood cells from getting congested in the abnormally dilated blood vessels. I just started a low-dose so I cannot tell if it works good yet. But it would only work for the pain if the erythromelalgia is caused from a blood cell disorder. I do not know why or what causes the erythromelalgia in me. But the last routine blood test I had, it showed that my red blood cells are misshapened. We don’t know what is causing this all of a sudden. She will check me again in six months. At least I have a good primary doctor. Actually, she is an APRN, and is better than any of my doctors. She listens and cares. I also have Raynauds disease in my hands. This is not painful, but when my fingers turn white and numb, I have to bring them back quickly usually by running them under warm water, or holding them on my belly to warm them up, to bring the circulation back. I love reading anything you have to say. Another strange thing that is happening in the last four months, I am growing new blood vessels all around my ankles. They are mostly veins , small ones, and some really tiny arteries. I don’t know if this is my body trying to help or if this is making it worse, but it would make sense that my body is trying to help return the blood flow as there is too much red blood accumulating in the bottoms of my feet. I feel like you are a good friend even though we have not even met in person. And we will agree with each other that we will keep on trying, even though this pain is so discouraging and it makes it even more discouraging when our list of things to do keeps growing. I am going to need a new computer soon, and I can hardly wrap my head around that. But I have started doing a little bit of research for that. I need to get a new printer first. Well when I send this I will say a prayer for you, Jesus died not only for our salvation but also for our healing, so I just keep on asking, And hoping for healing for you and me. My name is Nancy. And my cats name is Chica. I don’t know what I would do without her, because I have to talk to her sweetly which keeps me calm. She is not a lap kitty per se but her personality makes up for that, plus she sleeps right up snug against me all night, no matter how many times I get up, she will come back in bed with me. I got her from the Humane Society, When she was six months old. she was living on the streets before that, and I had to do a whole lot of work to get her healthy again. Now she is getting too fat and is on a diet. Before I cause you eye strain, until next time… Please let me know how your doctor appointment went. I always type out what I am going to say to them so I do not forget any points that I wanted to say. We will keep pushing forward, and sharing anything that we find out, and try our best to keep a positive, calm, and sweet attitude. All the best to you . 🤗