It’s I thought that this might be helpful for those who are still trying to decide whether they have EM or also though who are unsure of what type of EM they have. Over the past 7 months I been gradually improving to the point where the results are pretty significant. With that being said, I am not cured yet but have definitely made a dent in my EM that I was told by countless doctors would be untreatable. I am still tailoring my treatment with some great doctors and hope to be completely symptom free some time in the next few years. I am able to workout, wear shoes all day, be active, and be in warm weather. I recently went on vacation to to Florida and had no flaring while sitting in the sun and had minimal flaring while working out. My EM is primarily in my feet. I had symptoms in my ears, hands, and knees as well which have all disappeared. My EM responds to three types of medications: serotonin antagonists, sodium channel blockers, and beta-blockers. My EM worsens with prednisone, calcium channel blockers, and NO producing medications and supplements. My EM also responds to physical activity. Working out and conditioning my feet has definitely helped as well. I hope this progression guide can help those and show that improvement is very possible and not just in pain reduction.
ALL photos are either after vigorous physical activity or a long hot shower. Those were the best ways to monitor my improvement, especially the hot showers.
April 2018-October 2018: The early months of my EM appearing, no treatment.
October 2018-Present day: Treatment has been pretty consistent on cyproheptadine, mexiletine, and propranolol (was metoprolol for first few months and then switched). These photos are in the order in which symptoms improved. My symptoms in my hands and ears popped up in September-October and disappeared completely as of earth March 2019. As you can see, as my symptoms started to fade you can see that my EM stems from irregular blood vessel control in that you can see the microvasculature in the blood vessels dilating in spots.
These last photos show what my feet look like after working out in a progression over the months. I am very vascular and always have been so that is normal for me, it is the redness that is my EM. As you can see, the redness has gradually decreased. The last photo was taken after biking for 40 minutes and playing basketball outside for 30 minutes in 75 degree weather in the sun with crew socks and shoes. Playing basketball for the most part has been the best way for me to gauge my progress in response to working out. Biking does not cause a flare and weight-lifting doesn’t really either. As you can see the redness when compared to the photo from April has drastically reduced which was taken after a 15 minute walk in 40 degree weather.
Some of those photos look quite painful. I’m glad you’re improving!
Interesting observation about the prednisone. I was also at my worst while on high dose oral prednisone (I didn’t think it was probably a good idea when you started IV prednisone.)
I think we may have the same underlying pathophysiology for our EM, whatever that may be. We take nearly the same medication now (mexiletine and propranolol, I’ve never tried cyproheptadine) and the trajectory of your illness is similar to mine. As my onset predated yours by a few years, you can probably look forward to continued improvement. That improvement has occurred very slowly, for whatever reason, but remains consistent and ongoing. Like you, my EM also responds well to physical activity.
So, yay! I think you have good things in your future. As a rising med school student, perhaps someday you’ll figure out why this happened to us.
One final note: My EM began not long after I had a cortisone shot in my knee. I am also unusual in that my primary EM symptoms are at the knees. Considering that we both worsened while on a corticosteroid and my EM began entirely after a corticosteroid injection into my knee, EM as a dysfunctional hormonal response might be an interesting avenue of research.
While I hated being on the prednisone, I think I was able to learn from it. Even if something makes me worse, it is just as helpful as finding something that helps. It definitely appears that anything that causes a cortisol spike makes my symptoms worse, this may be what can trigger EM. I was under immense stress prior to my symptoms starting and the knee surgery might have just been the final push. I totally agree that there very well could be an underlying hormonal trigger that can cause the dysfunctional vasculature.
Although my symptoms are primarily in my feet, I have had symptoms in my knees that look just like your photos. My symptoms actually started on my surgical knee, progressed to my feet, and then just kind of disappeared on my knees but every now after running or sitting in direct sunlight they’ll turn red for a few minutes and then return to normal. Sometimes they look like this if I take a really long >15 minute hot shower. Unlike you though, I have very little discomfort with it and wouldn’t notice them if I didn’t look at them.
After looking at your photos again, it makes sense that our EM responds to similar treatment because they look very, very similar. The mexiletine doesn’t seem to help me as much as it does you, the cyproheptadine is the heavy hitter for me but the mexiletine definitely has benefit. My neurologist brought up the idea of potentially trying tegretol to see if it targets the problem more specifically than mexiletine but I am hesitant.
Hopefully someday I can make some dent in the EM unknowns, it would be awesome to be able to get some grant money in a few years to do some research on it. Some lab recently has claimed to be able to grow blood vessels from stem cells for research so that might speed up the process immensely for research on blood vessel related disorders and I think EM is up there on the list due to how debilitating it can be. There is a bright future for EM, I see new papers and studies every month or so which is always a good sign. I am very thankful that I have gained control of my EM and that I am progressing steadily but I won’t ever forget the first 7-8 months where it was a living nightmare.
You might be onto something with the stress response idea. As I said, a knee injury preceded my EM. What I haven’t said as much is how that affected me. To say I was extremely upset by the injury would be putting it mildly. My entire identity was built on running. Not being able to run sent me into an emotional tailspin.
The idea of EM as a disordered hormonal response to stress is an interesting one because it would explain how EM can be secondary to so many different diseases and why it’s often said treating the disease EM is secondary to is most effective in those cases. Better controlled disease will reduce stress and if stress hormones are the trigger in some way, that would explain why treating the underlying disease is effective.
And yes, the erythema at your knees looks very much like mine. What’s interesting is that EM at the knee always seems focused around the patella. Why do we not see EM symptoms on the back of the leg, behind the knee? What are the physiological differences between the 2 areas? Could those differences have significance? Those are just some questions to consider.
EDIT: Keeping with the theory of EM as a disordered stress hormone response, perhaps one of the reasons people find benefit with “Bob’s protocol” is simply that a warm bath will reduce stress. Ditto for exercise, which also reduces stress.
I was the same as you, incredibly active and being sidelined for months on end was making me go mad. After 6 months I decided to go ahead with surgery and then all of this started.
It definitely seems as though the more at peace I become with knowing that I have EM, the less my symptoms bother me and then I start to see more improvement. This could be a major part of how Bob’s protocol helps others but I have also seen reports of this being used for raynauds with cold water that reduces blanching episodes. The propranolol also helps keeps my nerves at bay and mexiletine helps dampen sympathetic flow so those could be alternative ways in which those medications help.
The patella and more so how EM can appear more around bony areas might be that the skin is thinner in those areas and skin circulation is nearly all mediated by microvasculature, which is what is disrupted in EM. The fact that our EM is all superficial might point to the idea that the main system of our circulation, the deeper system which passes through the back of the knee and legs, is actually functioning normally. I think that the way that EM presents is vital in determining the proper treatment. I have noticed that some people’s photos look like a completely different disease than mine and that might be the case, especially those with deep vein swelling specifically. That might be due to the diseases being completely different and more so, why some do not respond to EM alleviating medications.
do you still take turmeric / feverfew + find those helpful? did you get night flares and does your routine help you with those?
i am glad you see improvement and wish you luck in medical school.
my doctors were willing to rx steroids for me to try but very much cautioned against it in the end, saying they could destabilize my (already quite destabilzed, ha) vasculature and that they’ve seen some people develop EM-like symptoms post-steroid (I think a rebound immune thing, but not sure). I previously had a nerve block where the surgeon put a small amount of steroid in the nerve bundle, and said that as my body resorbed it I might feel some systemic side effects - man, I was a full body tomato for a few days! So I am thankful I never went through with steroids.
I take 3 medications: propranolol, cyproheptadine, and mexiletine and 2 herbs: feverfew and white willow. All of them to the best of my knowledge offer benefit. Anything that has made me worse or had no benefit after 2 months I stopped taking. They are split up so that I take the bulk with breakfast and dinner and some at lunch, it is nothing too serious in terms of pill popping. Tumeric I thought was helping but it was just my normal gradual improvement so I stopped taking it. And I would get night flares every night last Summer before I started any treatment. Since about January of 2019 I don’t flare at all unless it is triggered by exercise. I can now take hot showers at anytime of the day and sleep with down covers over my feet every night with no flaring which is a huge improvement. I was very limited prior to starting any treatment and now you would have no idea that I have EM if you were to see me in public, at the gym, etc. I live a normal life with one limitation that I have to sit down for a few minutes every 45 minutes or so if I am walking in hot weather with socks and shoes on to let my feet calm down but then I can resume walking without a problem.
In regards to the steroids, they did not help me and actually made me worse while I was on them. Things cleared up once I was off of them. They can cause facial flushing or moon face which is very common. I experienced this everytime I had the infusions. I am not sure why this was, I was going to talk to my doctor about it at my next visit to see if trying a phosphatidylserine supplement might be worth a try to lower cortisol levels. My doctor is also working on trying to get me pizotifen (from Canada) to hopefully replace a few of the serotonin antagonists I am taking (Dr. Cohen wrote that it was the most successful seortonin antagonist he tried). My goal is obtain the most efficient medication regimen while taking the lowest amount of therapies as possible.
Thank you so much for all the information you post. The previous post about Dr. Cohen was very helpful to me. I have been taking metroprolol for years to control heart rate since I have Afib. I only take 25 mg per day. I take 40 mg per day cyproheptadine. According to what I understand from Dr. Cohen is that I need serotonin antagonist. Before I started taking cyproheptadine my EM was almost unbearable. After about 2 months on it there was great improvement. I just started taking ALA. I also take aspirin which seems to help also. I was a bit unclear on his recommendation about magnesium. Do you have any information about that. I’m so thrilled about your success.
That is great to hear about the cyproheptadine! I only take 12 mg a day, I decided to add standardized feverfew instead of upping the dose because the cyproheptadine was very sedating for the first month or two. In terms of the magnesium thing, it can’t hurt to try and ALA also causes vasodilation so if you don’t respond well to the ALA, I would doubt magnesium would be of benefit. Generally if a beta blocker helps, a calcium channel blocker like magnesium will cause you to worsen. The only way to find out what works is to keep trying stuff safely and keep documentation of it all.
Wow, this sounds like an insight. My symptoms are pretty similar to both of you, guys, and I also received knee cortisone shot a while before starting having symptoms. Can this be a pattern for certain cases of EM?
I had EM for 8 months before I had any cortisone but it could cause in increased stress response which might be a cause for EM to start. Mine started after a lot of mental and physical (surgery) stress.
I had an arthroscopic procedure on my right knee too. That put me under quite a lot of stress too.
Thanks a lot for sharing your story and evolution. Please keep updating!
Hard to say. I had a cortisone shot in November 2014. In December I told my primary care doc I thought something was seriously wrong. He put me on a 2 week taper of prednisone. By the end of December I went to a rheumatologist, again saying something was seriously wrong. As I was not yet showing any outward symptoms and my diagnostics were fine, he assured me there was nothing to worry about. In January 2015 my EM symptoms started. I was once again put on high dose oral prednisone. Suffice to say, the steroids didn’t help. Both times I took prednisone it caused a sensation that felt like my hands were being crushed. It was similar to the sensation I first felt in my knees that sent me to the doctor in the first place.
Really interesting, Carter. I felt something pretty similar, like an awful pressure inside my knee. I was put on prednisone too by a rheumatologist, and as all my tests came negative, he told not to worry. The rheumatologist was puzzled about the redness and warm to touch on my knees. He thought the amount of swelling wasn’t very relevant.
Only a dermatologist was interested enough in the symptoms so she ended writing a reference letter to have me be seen by the dermatologic department at Mayo, where I was ultimately diagnosed.
I developed a very mild case of Raynaud’s earlier than EM, just wanted to share with you all in case it shades more light.
Joe, my knees look very similar to yours when they flare up:
I was a really active before all this nightmare. Running, cycling more than 60 miles, swimming… Obviously not been able to exercise affected me greatly as you both, guys. I felt it was also an important part of my identity.
Regarding medication, I’m currently on Lyrica, Cymbalta, and Amitriptyline. I don’t think they are improving my symptoms, but at least I can sleep at night. The compound cream prescribed at the Mayo clinic didn’t have much effect on me. I’m looking forward to a new doctor’s appointment here in Spain to share with him the sodium channel blockers option and see if he can agree to explore the Mexiletine road that is working for you and Carter and the Cyproheptadine that is doing the same to Joe.
It does appear as though your EM resembles mine and Carter’s quite a bit, albeit looks worse than mine ever was but that’s nothing that can’t be fixed. Your knees look very much like Carter’s photos. From my prodding of this forum and several medical journals it seems that three types of approaches have the most reported success:
Calcium channel blockers vs. beta blockers: Either one of these two seems to help the majority. CCB’s open up blood vessels to prevent constriction, these should be used with caution as they can make EM worse (it did for me so I stopped it). Beta blockers cause peripheral vasoconstriction indirectly via activation of the sympathetic nervous system to offset the drop in blood pressure from b2 blocking.
Serotonin imbalances: It seems as though serotonin may play a very important role in EM. Some respond to medications that increase serotonin activity like effexor and some respond (like myself) to serotonin blocking medications like cyproheptadine or the herb feverfew. Effexor seems to be very effective in some cases and cyproheptadine appears to not be selective enough to provide the same benefit as effexor. Pizotifen (serotonin blocker) has shown promise and could be just as selective as effexor (in contrasting ways) but it is not allowed in the US and some european countries.
Sodium Channel Blockers: These seem like a great place to start. It took me a long time to find a doctor that was willing to prescribe me mexiletine. Undergoing a cardiac EKG prior to starting is a good idea. The other sodium channel blocker that can really help EM is Tegretol.
Your knees look pretty similar to how mine looked. My symptoms rarely extended that far above or below the patella. It did a few times when I didn’t immediately ice. But I more or less kept myself on ice until I found effective medication. I don’t know if that helped or not.
I would definitely ask about a sodium channel blocker. I’m really pleased with where I’m at now. I reduced the mexiletine from 3 times a day to twice a day in March and have seen no regression. I can exercise mostly without issue now. (I have some minor blood pooling in my feet if I abruptly stop vigorous cardiovascular exercise.) I hate the beta blocker I take with a passion though and would like to stop taking it.
My experience was so different from everyone else’s. While I had to wrangle with Kaiser Permanente to find me a doctor experienced with EM, once they finally did he didn’t want to prescribe me anything BUT mexiletine. He was really confident about it.
This is how I obtained mexiletine as well. After a countless doctors and Mayo Clinic, I found a doctor at Northwestern who treats EM and sees it pretty regularly and the first thing she wanted to try was mexiletine. I saw my greatest improvement about 1-2 months later so that may speak for itself.
Thanks a lot to both of you, guys. Your information and experience are so valuable to me and I suppose to a lot of other forum users. Please, keep the forum updated with your evolution!
