I’m new to the forum and came across it by chance which I’m really grateful for as I’m struggling at the moment.
I was diagnosed with EM in May 2023 at age 36, along with Raynaud’s. It started in my hands and feet but has since spread to my knees, nose and ears. I’m currently experiencing my worst flare, usually I flare on and off most days or have a flare that lasts a few days but then eases back to on and off which isn’t ideal but I was managing to an extent. Currently I’ve been flaring since the beginning of January 2024 non stop, I have constant pain, I’m not always swelled and red but the pain is consistent, this is also being felt in my legs but not sure whether this is related to a neurological condition I have. I haven’t been able to work since the start of the flare which I hate as I like routine and to be busy.
They think my EM is secondary to transverse myelitis ™ which I was diagnosed with in 2018. Since my EM diagnosis I have tried gabapentin, venlafaxine and I’m currently taking pregabalin. I was on amitriptyline for TM but we withdrew this to try venlafaxine which failed miserably. I’ve noticed a slight decrease in pain level with the pregabalin so we have been increasing the dosage but so far the increases haven’t made any further noticeable difference but we’ll keep going.
I’m usually a very positive person but wow this really tests you. I was wondering whether anyone had any tips, or whether you could share medications that have worked for you or any alternative treatments?
Hi Amy. I am so sorry to hear about your struggle. You just have to go on trying until you get the right thing that gives you telief. A journey of trying and eliminating.
I was diagnosed in 2018. Was prescribed pregabalin 75mg and tripeline 10mg once a day initially with a bit of relief. Then it was upped to 75mg pregabalin twice a day. The doses were increased to 150mg pregabalin twice a day and 25mg amatripeline at night. Much more relief. But have a look at your other chronic meds, blood pressure meds in particular. I cannot use any vasodilator, it makes me flare badly. But even changing my bp meds a few months away to a newer generation also trigger my EM. And it is basically the same. You just have to try again and again until you get the right thing. Stay positive and good luck.
Hi Kyla,
Thank you for your reply, it’s good to hear that you get some relief with pregabalin and amitriptyline. My pregabalin has just been increased to 250mg a day so hopefully this helps, I may speak to my doctor about adding in another medication as perhaps it’s a combination that I need. Do you use any topical medicines? I’ve heard lidocaine patches or cream can help but I’ve not used these yet.
I’ll definitely review my other medications too in case they are causing flares.
If you live in a state that has legalized marijuana you can try that. My son has been using this for about 6 years. He does not get complete pain relief but enough so he can get through the day. He is in constant flare feet, legs up to past his knees, hands up to his elbows, nose/cheeks/ears. With marijuana (medical grade) I have actually watched the red lighten up everywhere or go away completely. He uses this usually 1-2 times a day. He is not going for complete pain relief but enough so he can get through the day. He has tried a lot of other medications ( nifedipine, capsaicin, aspirin, etc but he either had no relief or the side effects would be worse than the treatment. His is primary, so he got EM from my husband or myself and neither one of us is experiencing any symptoms currently.
Hi A,
The non-stop flares are so difficult to deal with. One thing I have found is that if I do get swelling in my feet and legs (doesn’t happen often unless I’m 7-8 days into a constant flare) it can really break the flare if I can unload the fluid. Talk to your doctor about allowing you to take a diuretic like Lasix prn (as needed). You need to do this with medical supervision because you don’t want to create an electrolyte (sodium, potassium, etc) imbalance so it becomes a balancing act between healthy dietary intake and fluid output. And to make sure you don’t have an issue that makes diuretics problematic.
I’m certain everyone reading this already knows what I am talking about here. One of the challenges we all encounter is that most physicians are not familiar with this disease and many have little or no experience working with it. That can result in what I have come to think of as the “let’s throw everything on the wall and see what sticks” approach. My experience has been that many of treatment recommendations seem to give me a positive “bump” that may calm my symptoms down, but virtually none of them work beyond 2-3 weeks…maybe some kind of placebo effect? As a doctor recommends new drugs, I always explicitly ask if the new drug replicates some of action of drugs I am already on and if so, can I stop taking one or more medication.
I regularly search the professional medical journals for current publications on EM. Mayo Clinic has a fairly robust engagement with it and their multidisciplinary team publishes fairly frequently. Even if you aren’t interested in reading the medical journals, I think a good primary care physician would appreciate if you passed an article along to them. My experience has been that most of my doctors are so busy these days and I am probably the only active EM patient they may be seeing so its unlikely they have time to do any extensive research. I have tried to include a link (below) to a 2023 article from Mayo that is a fairly good overview of all the latest on EM (at least from Mayo Clinic’s perspective. Click on the PDF box at the top of the article to get an easy to read article. If the link fails, try going to Mayo Clinic Proceedings and then searching for the title (below)
Hi Jo,
Thanks so much for the reply. The article is great, there’s so much information in there and lots more for us to try. I’ve found it really difficult to find information about EM and I’m the only patient in my practice with the condition and none of my primary care physicians had seen or heard about it before. They’re committed to help but they’re busy and won’t have time to do research on it so this article will certainly help
Hi Shannon,
Thanks for the reply, I’m pleased to hear that you have found something that works for your son, it sounds really interesting. Unfortunately in the UK medical marijuana isn’t available to me
