It’s been a little quiet here lately, so I thought I’d throw a general question out to the community.
What’s your biggest current challenge from EM?
For me it’s side effects related to the medications I take, which include cold hands and feet, postural hypotension, and heartburn. Of those, the cold hands and feet is most bothersome.
Example: I went to the Washington Nationals World Series victory parade this past weekend (Go Nats!) and my hands were like ice from being outside for a few hours. It wasn’t even that cold, just low 50’s. But to me it felt like I was in the arctic. I was utterly chilled to the bone.
I have increased flaring during any “fight/flight” situation no matter how mild. Eg, talking to people who aren’t family, thinking hard about a problem. The best thing for this is propranolol - but my cold pain can’t handle beta blockers. Clonidine and sympathetic blocks were ineffective. Higher dosed mexiletine is partially effective but I struggle with brain fog on it. I go back and forth increasing the dose of mexiletine (750 mg) until I hate the brain fog so much I go back down (~450 mg) and hating the increased “fight/flight” flaring…
Anyway increased flaring while talking to people has been pretty soul-crushing to me, + I’ve gotten way more reclusive (eg not wanting to vid chat with friends). It’s been years since I have been able to have more than a 1 min conversation with non-family without increased flaring.
My biggest challenge is finding someone to treat the pain. I have 3 bulging discs in my lumbar spine that may be a lot of my problem but I have been to ortho doctors and am now being treated by a pain mgmt group, 3 failed epidural later…I am beginning to think this is how it’s meant to be. Very frustrating! They keep suggesting a spinal stimulator but I don’t feel comfortable with the idea of putting something in my back. Besides that, I have heard so many negative things about them.
The neurologist who diagnosed me put me on Keppra and that was terrible. He was going to try all the same meds I spent years trying for fibromyalgia. I wasn’t going down that road again. I will be trying a compound cream my pain doctor wrote a script for to a company they use. My insurance doesn’t cover it but I’ll try anything at this point. Lidocaine gel no longer works. My customized wheelchair should finally be here soon. My biggest challenge is showering. It makes everything worse. I can’t walk because my feet and ankles are huge. Shoe size went from a 7 to 9.5 my hands always swollen and constantly flare. Does anyone have it as bad as me? This started in February and never stopped. It’s now affecting my upper back and knees all swollen. I’m on muscle relaxers and pain meds but I don’t see this ever getting better. So I guess everything is a challenge every day. I just wonder if anyone else has it this bad?
My biggest challenge is finding a helpful treatment. So far nothing has reduced the frequency of the flares or the pain. Was super excited when finally prescribed Melexitine 4 wks ago, however this is proving to not be of any benefit either.
machel - that’s disappointing. Just want to say, if ok with your doc, to consider titrating up to your max tolerated dose. When I trialled 300 mg initially, it was a bust. Later I revisited it and noticed some benefit 450-750mg. I’ve noticed therapeutic dose varies quite a bit per person. But some people just don’t respond and I know the trial-and-error craziness is beyond frustrating.
CP -
I’m sorry for your suffering. I’m going to feel a little hopeful for you though that topical lido gel worked at all!! Perhaps you can get higher strengths compounded. I have a very strong topical benzocaine 20% / lido 6% / tetracaine 4% and it objectively cools me down a couple degrees. I also hear of lidocaine being compounded at 10%-20%. At high strengths, the compound can be very gritty, so just a warning if friction will irritate. It’s possible to get it in a non-gritty formulation (I think, at least for the strengths I use). Amitriptyline is a sodium channel blocker like lidocaine albeit a weaker one - but the upside of it is it is longer acting. It’s unfortunate that none of these are covered by insurance.
I think though that if you have body-wide symptoms, you might need systemic treatment. I’ve been very aggressive with treatments since my onset - I’m not even sure if this was a good thing in the end - but I do feel that the “big guns” are infusions - IVIG, ketamine, lidocaine. Ketamine is not used so much for SFN / EM, but it is for fibro and central sensitization which might be a component for your etiology. Stanford pain likes to do 5 day lidocaine iv’s and then maintain a manageable pain level with oral medication like mexiletine. IVIG would get any inflammatory SFN contribution. Even if nothing is permanent, it might give your providers more direction about treatments to pursue.
I had a doc say once regarding my swelling - that if it is from a neurally mediated process, things like NSAID’s, diuretics, low sodium diet etc will not work - it needs something to interrupt the neural circuits. I found that some medications actually increased the swelling so word of caution. (looking at you, gabapentin + baclofen…) He was right - at least in my case. Zonisamide, mexiletine, and botox did bring down the swelling gradually over time … at least partially.
I do know a couple others who suffer quite a bit - being bedbound, unable to type, full body and even internally, amputations, etc. I think severity is across the board. My loose sense is most people at least at some point in their EM journey are in constant flaring (and hate showers!). Pain is something I’ve come to respect. I wish you luck in your treatment process. Happy to help if I can (disclaimer - I’m not an MD ) with treatment options or doctors in CA.
Thanks for all the information. Keppra didn’t work. I tried a compound cream that was let’s 5% Leto 10% Bupiv 3% and Prilosec 5%. It unfortunately didn’t work. I have read several times about IVIG. I just don’t have a Dr that will do it. I’ve gained 25lbs in a short period of time due to this inflammation. Maybe if I beg my pain management dr he will help me with IVIG. I’m on morphine and diazepam. My customized wheelchair is finally coming next week. I had to buy winter shoes. I went from a 7 to a 9,5. I am also going to start an anti inflammatory diet. Right now it’s reorganizing the house so I can get out of bed. Never thought I’d be looking forward to a wheelchair. Have a good night
Thank you standing_cat, I have been considering maybe I gave up too soon. At 300mg I didn’t feel any results and I had worse pain in my knees which usually they seldom flare. Wasn’t really flares, more like bone and ligament pain. Hard to describe. I may attempt again and see if I can get up to the prescribed amount.
I’m really sorry that you’re struggling so much, Linda. Just a word of advice…
An anti-inflammatory diet will likely be ineffective. That’s because EM doesn’t produce inflammation. I know that’s very confusing because people think of inflammation and erythema as being the same thing. They’re not. Inflammation causes erythema but the erythema seen with EM is not inflammation, which is an immune process. That’s why despite having massive erythema, your labs likely show negligible markers of inflammation. Because you don’t have inflammation. You have erythema. The erythema in EM isn’t caused by the immune system. That’s why anti-inflammatories are of no use in treating EM.
Hi thanks for the information. I don’t dispute what your saying at all. But I I have several things going on and I bet it makes the EM worse. My knees have been so swollen you can feel that there has to be some fluid in there. I have developed wheezing and weight gain so that makes me think that is something different. What do you do if you have high levels of erythema? Is there a blood test? What are you doing for treatment? I see my new primary Thursday and I want to present this properly. Hope you are having a pain free day!!
It could be that you do indeed have some inflammation occurring from concomitant disease.
What do you do if you have high levels of erythema?
Unfortunately, there isn’t an established standard of care for non-inflammatory erythema. Erythromelalgia is rare. Medical journals have published reports of a disparate number of treatments that have been found to be successful for erythromelalgia.
Is there a blood test?
There is not a blood test for the non-inflammatory erythema that occurs with erythromelalgia.
What are you doing for treatment?
I take a sodium channel blocker (mexiletine) and a beta blocker (propranolol). I took the beta blocker first and after the sodium channel blocker was added to it the combo eliminated virtually all flaring. The beta blocker keeps my blood pressure very low, which I know to be beneficial. My pressure is sometimes hypotensive. (I’ve seen 89/56 as a normal reading.)
I first recognized the influence of blood pressure on my symptoms when I was being given trial phlebotomies about a month after symptoms started. During one session my blood pressure crashed and I briefly passed out. When my pressure crashed symptoms disappeared. After a few minutes when pressure was restored symptoms returned. I’ve since recognized when I am agitated, angry, or upset I can feel symptoms starting up. I am fairly certain this is due to a rise in blood pressure.
The sodium channel blocker is still the more key component of my treatment, however. It is what stopped the perpetual cycle of flaring.
Hi with having high and low blood pressure have you been tested for POTS disease. After I started passing out they did a cardiac work up and it was normal. I had a tilt table test done and sure enough that’s what it was. No cure no treatment. When I feel my heart start to race I take my blood pressure. If my pulse is high and pressure low I take a metoprolol.
Being able to work and live my day to day life honestly. I’m 19 and still reliant on my parents as I’ve had symptoms of EM starting at 14 years old. Now I have been diagnosed with Erythromelalgia, fibromyalgia, neuropathy, gastroparesis, carpal tunnel and may have pots syndrome as well as an autoimmune condition. I have muscle spasms in my legs as well which deters me from driving. My Erythromelalgia flares without fail whenever I stand or have my legs down making it difficult to even sit down to do a computer job. I am going through vocational rehab in an attempt to find a job yet they have even said they don’t think I can work more than a couple hours at a time. I have applied for disability and was denied once and now have been waiting nearly six months for my appeal decision. I feel like I’m a leech to my family all because my body decided to not be normal.
I am aware of POTS but have never been evaluated for it. I do have orthostatic intolerance and regularly feel light headed when changing positions from lying down to standing. I just don’t get tachycardia along with it.
Have you had any other testing done? Something off the top of my head would be to consider a metabolic and neurological workup to test for proper thyroid, pituitary, and autonomic functioning. It seems as though your issues are not from inflammation due to you having issues with POTS, BP control, recent weight gain/constant swelling but it also appears that you have MS and fibromyalgia so your EM could also be a cumulative symptom that is stemming from more than one of your medical problems.
In response to you, @CarterDK, my biggest challenge as of recently has been being able to keep my stress levels down and getting proper sleep during school. I notice a slight uptick in symptoms if I am seriously stressed or sleep deprived.
My biggest challenge is the Barometric Pressure changes. They set off a flare every time it changes in any direction. I started with EM in my cheeks 25 years ago it was mild but the pain in my cheeks was still painful but nothing like what my feet feel like. In 2 weeks we are trying a Rhizotomy on the nerves going to my feet. I am hoping it helps. I know it is a temporary fix ( 1 or 2 ) years but any relief is better than none. If it works I can do another Rhizotomy when the 1st one wears off.
) with treatment options or doctors in CA.