It seems like it’s more vascular bc it’s more of the veins and tissue affected not the bones or arthritis. I’m so depressed from it. Have had raynauds for 3 yrs now and the EM just started 5 months ago. It’s coming on so strong. I’m so scared of what it’s going to be like in the summer. Even now at 78 degrees I find it hard and upsetting to play with my kids outside and take them to the park. I get hot, red, burning, throbbing hands with shooting pains when even cleaning or in the sun or warm. I can’t even work out anymore. I had to wear ice packs on my hands when I was on the treadmill. This is so depressing! What medications have worked for anyone?
Hello there. I can only tell you what works for me, not to say it is going to help you but everything is worth a try if you are desperate! As far as I know it is seen as a nerve related disease, as well as vascular. I was diagnosed with EM in Sept last year, my feet are affected. At that stage I was already taking Lyrica 75mg (pregabalin) twice a day and Trepiline 10 mg (Amitriptyline) at night. I tried a lot of other stuff as well that only made it worse so I settled on the 2 meds. I started taking a 100mg aspirin once a day in Dec after a really rough time and my flares was better. Stopped the aspirin a while ago for a few days and only then realized how much it really work! Back on the 3 meds as well as taking Alpha Lipoic Acid, a anti-oxidant, my feet were extremely sensitive and it is so much better. I am without flares most of the time, for the last few weeks I only have irritated feet and light flares evenings from 18:00 to about 22:00. Then they settles down and I sleep well. I must admit it is starting to get much cooler as our Autumn have started. I am not cured but it is getting better gradually, seems likely to be chronic. I consulted a internist specialist. He warned me that it can take a year for the meds to start working. I also seen a neurologist but he missed diagnosed me. As it is a rare disease it is better to try and find a specialist that have knowledge of EM. I really hope you get someone to help you but don`t give up hope.
1 Like
The kind of doctor you need to see is one that is familiar with and has previously treated erythromelalgia. That may sound simple, but it’s not. Most physicians have never heard of erythromelalgia. While I know a member or two has been treated by a rheumatologist, rheumatology is not your best bet. Rheumatologists primarily deal with immune-mediated diseases. Unless your EM is secondary to an auto-immune disorder, erythromelalgia is unrelated to rheumatology. EM patients are most often treated by dermatologists, neurologists, hematologists, or vascular specialists. While erythromelalgia touches upon all those specialties, most doctors in those fields will still be unfamiliar with the condition. You’ll save yourself a lot of frustration if you ask in advance of making an appointment if the physician is familiar with erythromelalgia. Don’t just make an appointment with a random doctor and expect them to posses a wellspring of knowledge related to EM. You’re nearly certain to be disappointed.
The physician that treats my EM is an anesthesiologist. However, I did not find him myself. I was sent to him by my HMO (Kaiser Permnanente) after demanding they find me a physician experienced with erythromelalgia. I had previously seen two primary care physicians, two rheumatologists, a hematologist, a neurologist, an allergist, and a dermatologist, all of whom were unfamiliar with erythromelalgia. The anesthesiologist who treats me prescribed a sodium channel blocker, Mexiletine, that provides approximately 95% suppression of my symptoms.
1 Like
Thanks guys so much for the responses!
Hi!
You are very right. This disorder is depressing and isolating. It takes time, but you will adjust to the new normal, and you will develop creative ways to manage the pain.
The most helpful doctors for me what rheumotolgist & dermatologist. Currently I am taking 150 mg of venlafaxine and 200 mg of gabapentin. This has been life changing for me. Warning: the first 3 days of this medication was not fun. I felt really dizzy and had side effects, but after that 3 days, I was completely fine and my pain went from a 9 out of 10 to a 1 out of 10. Everyone is different and responds to things differently. What area do you live? you can search for a doctor that is familiar with this condition. Here is a link: https://erythromelalgia.org/resources/physician-directory/
Additional material: https://erythromelalgia.org/wp-content/uploads/2017/09/TEA-PatientGuideBook-1.pdf
Other tips: Take care of your mental, emotional, and social health. I’m happy to connect you with additional resources. Feel free to private message me on here too.
I wish you the best!
100% agree with Carter. Before you make an appt , make sure they know about EM and treat patients or you are wasting your time. My Rheumatologist said she knew what EM was but at my appt, she pushed me off onto a Neurologist, not wanting to deal with it.
I know it’s natural to feel depressed, but don’t lose hope. I was exactly where you are now three years ago. I’m a thirty-something and felt like my world was crashing in on me. Just remember, you’re not at a dead end street. There are people with erythromelalgia who find successful treatment. You can live a normal life again.
Thank you for all the tips. My pa has referred me to a hematologist. I will call and check is she’s familiar with it. I have an hmo insurance and I’m limited to doctors.
Dear SThomas,
So sorry for your dx. I too have Raynaud’s and EM. I also have MS and Arthritis. It’s tough but and as someone else said isolating.
I take Gabapentin and a coated aspirin daily. I take 400mgs gabapentin twice daily. Sometimes I add an extra gabapentin but try to keep it down I was already on the gabapentin for the MS but kicked up the dose. It seems the aspirin helps a great deal.
Some people are born with this illness but the kind we have is not. Try to wear open sandals in the summer. I too had my first EM attack while vacuuming. I have neuroma’s and arthritis in my feet along with neuropathy from the MS. I was very frightened. My feet looked reddish purple, like a plum.
The doctor didn’t know what it was. I’ve seen my neurologist who told me to research it myself. I did and went back to him. I then saw my rheumatologist who’s young. I had to give her an education myself as she scrolled thru her computer articles.
Anyway, try not to overtax yourself. The good thing is my EM has calmed down most likely due to the aspirin and gabapentin combo. My rheumatologist told me to stop the aspirin but when I did I had a flare so I started it again. I take the 81mg size.
Hope this helps you.
Good luck and God bless you.