Anyone out there with Erythromelalgia?

Has anyone with Erythromelalgia Tried a spinal cord stimulator?

I have not tried that and my doctor won’t prescribe it for me. I have also heard of some people taking Lidocaine infusions but again he says no . I have tried every pill known to man and no help.

I have also tried every pill there is, I even searched for other pills at other medical sites online, and tried them all, my primary doctor lets me try anything that I found, and I would start out with a low-dose and build up. They either did not work at all, or they had horrible side effects. Lidocaine infusion is very dangerous, it can stop your heart. don’t do that.. A Doctor Who does Joint injections “ physical medicine and rehabilitation interventional spine“ she is extremely nice and probably the only person who I would let try this. I had asked her if she knew of anything that would help me, and she said she would research it and get back to me and she said that she found that the spinal cord stimulator would help. I hope she is right. I have been told by other doctors that it does not work. I know that she is very nice anyway. She is the first Doctor Who has even tried to help me, and who has done any research about this. I have learned that it is the small nerve fibers that cause the nerve pain in my feet, that is why I was negative for neuropathy. But the burning part is caused from small blood vessels dilating and causing too much of a blood flow into my feet causing the redness. This is what causes the intense burn. So people with erythromelalgia Are really dealing with two kinds of pain at once. I spend the most of the day on the couch icing and elevating. I just saw her yesterday, so this morning I have lots of questions for her. I have to start out with an MRI, in order to get this implanted, and i have to pass a psychiatric evaluation to make sure that I will be able to use the controls. Only other people with erythromelalgia can understand the intensity of this pain. And it is good to know that there are people out there who understand. Thank you for reaching out, it brings me comfort knowing someone understands the pain and frustration. Before I was diagnosed with erythromelalgia i Had asked for many tests. I looked up what can cause nerve pain in the feet, so I was tested for arsenic and heavy metals, I had veins and arteries tested (They only test the large vessels, and the cardiovascular doctor keeps arguing with me that it has nothing to do with blood vessels. Now I am armed with more information and can inform him that it IS the small blood vessels that is involved. He did not believe me when I showed him photos of my feet, and told him that elevation can make me feel some better and it gives me a cool rush at times when the blood returns back down ), and I already told you that I was tested for neuropathy and that came back negative. I can’t remember the other tests that I asked for. It has been ME doing all the research and asking for things except this new doctor is the first one to offer me anything, and I saw on the news this morning that a new spinal cord stimulator just came out, and I read about one of the first people to try it. It is different in that adjusts itself to different movements. I’ll see if I can send you the link .

It is a lady who has MS. And she is now pain-free whereas she had pain in arms and legs. This all started for me in 2017, and it just continues to get worse and worse. It was pretty mild when it first started.

Thank you for all of the information. It does get frustrating at times knowing that we are just another patient the doctor sees. I too have been doing my own research, looking for some kind of hope. I see my doctor in a week, and I will and him about the things you have sent me. God bless you and let’s continue the fight.

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 . 🤗

You are so right about Jesus, he said by his stripes we are healed . I live in Georgia, so yes summers here are brutal. It is hard for me to go in the heat for very long and air conditioning is my best friend. Thank you for sharing and remember we are not alone in this fight .

Oh thank you so much I was so happy to read your reply and to know that we both know that we have Jesus. Yes, the heat is so brutal on us. I Limit my ice packs to 10 minutes at a time, because I have seen those photos of what happens when people immerse their feet in ice water which is what I think of doing but I know better than that. Yes, we have each other and Jesus in this fight, a three-Corded rope is not easily broken. And I love Georgia! It is my favorite place in the world especially Jekyll island and Savannah and Cumberland island. My sister and i used to vacation there back in the days i could walk. We would go bird watching and do historical things… and nature things. I pray you can sleep peacefully tonite. “He gives His beloved, sleep”. Have a Good night. 🤗