New here and have been diligently reading the posts hoping to see if I can find relief. I have had undiagnosed Erythromelalgia and Raynaud’s since my teens and I have never had an issue with it since recently. My Raynaud’s was manageable and my Erythromelalgia would only surface after a long night of partying and then disappear the next day. I would go months even years without it again. The end of April, beginning of May is when I started noticing redness in my hands. They were mostly just red in appearance without the burning sensation at first. Sure enough, they began burning during nighttime, significantly on my right hand. Then a few days later my feet began to have the same symptoms, (again significantly on my right foot). I can’t say it’s unilateral since both are affected just one is worse than the other. Made an urgent doctors appointment and requested for bloodwork. As a nurse I read into everything assessed all my symptoms and requested to have ANA testing in addition to CBC, and CMP. All bloodwork was within normal limits EXCEPT scl-70 ab which was positive. (Scl-70 - Scleroderma) In a panic, I asked to see a rheumatologist which I did the following day. She wasn’t convinced with my symptoms and stated, “just because you have the marker, it doesn’t mean you have it.” Which is true, there have been research of many false positives and some people with a positive Ab won’t have while those who test negative do. She requested additional lab work and I was physically assessed in her office to make a clinical diagnosis. After looking at my “red palms” that I had to force by hanging them down and showing her pictures, she stated, “looks like Erythromelalgia.” Okay, I wasn’t surprised since I have self diagnosed myself a long time ago. She had seen 2 cases with it and suggested taking low dose aspirin. So today, I’m waiting for those lab results, a chest X-ray, meanwhile in agony during the night due to burning sensation. Took the aspirin, nothing, took Benadryl, helped me calm down but nothing. I can’t hell but think it’s due to my inactivity and stress of the current crisis that my Erythromelalgia reactivated and stayed. Help!
Someone, I believe in this group suggested a year or so ago that the following helped for her: 1) resolve any gut issues (good vs. bad bacteria) and 2) a CBD supplement. I took the ‘gut advise’ because I had heard on many occasions repairing the gut, making sure that it is healthy and your digestive system is working well impacts lots of different issues, including inflammation. I have been on a lectin free (see GundryMD.com) diet and have reaped the rewards in terms of much less pain/inflammation from EM. But, I want it all gone. I tried some CBD products, but I’m not sure they helped as much as the gut rebalancing. So, I began searching for the right supplement for me. I also have a blood disorder (MPN) and follow the research on that. A research study posted on one of the patient support portals lead me to NAC. I just began taking NAC about a week ago. I think…I repeat…I think that this product may be helpful. I purchased this supplement through Pure Formulas. Best of Luck to you in your search for the tools that will work for you.
Thank you for addressing the topic of Erythromelalgia (EM) symptoms & difficulty sleeping. I was diagnosed with EM 8 years ago. While my symptoms still occur most days, they are generally much less severe & much more manageable. Have faith. In time, I’m confident that you will find the right mix of lifestyle changes, diet, meds, and unique remedies to be used as needed.
My current EM sleep regimen:
- Meds: Benadryl 50 mg & melatonin 3 mg.
- Legs: elevated. Light sheet or covering of feet.
- AC - temp 67 F or less &/or room fan
- No alcohol. (this is an instant trigger for flares for many people with EM.)
Again, thank you for your post. I’ve been out of the EM support group for a few years. Unfortunately, my 14 year old son has been having symptoms of EM gradually increasing over the past 3 years. Time for me to get out of denial.
Im currently too young to take a variety of medicines however, online you can find gel packs that can slide into pillow cases that help my face when its burning. Also, the doctors told me that the em is controlled by the core temperature so if you have many layers around your middle, take some off as well as elevating your feet (also uncovered) and hands. I hope this helps
Hi, My EM started like yours, hands 1st then my feet. When I was at the Mayo Clinic the Dr. said to try Preparation H. I know it sounds crazy at 1st but with you being a nurse I’m sure you’ll understand why. You might find it to be helpful in the interim until you get something stronger. I never tried it personally.
I’ve been on IVIG weekly treatments for my CIDP which helps some with the EM. I also take gabapentin @300 mg.
As far as really bad flares go the main thing is to try and relax - deep breathing exercises help me. I learned that the hard way by getting overwhelmed because of the pain.
I hope you find this a little bit helpful. I wish you well.
Thank you all so much! I’m just thankful there are people out there who can send me some encouraging words and possible remedies that may work for me.
Hi, I really wanted to mention, stand up to your doctors for many reasons. True, just because you may have slightly elevated marker doesn’t mean you definitely have it, but in my case, just because you DONT have markers doesn’t mean you can’t have it. That has been very frustrating. It’s taken me 3 years for any kind of treatment for this condition and Undifferentiated Connective Tissue Disease. 3 months on hydroxychloroquine and finally getting some relief. Believe it or not it has even helped calm my flares down with this condition. I get really bad Symptoms on my face and is actually better. I had severe flare last December in my Feet lasting about 2 months and thank goodness, calmed way down.
Good luck, and never hesitate to “fire” a Dr because remember, you are paying them.