I was diagnosed with EM by my hematologist this year and have since accumulated a variety of other specialists, who all agree to some extent with the diagnosis. Lately however, both my pain doctor and rheumatologist have made comments about if I do have EM, it’s not text book because EM results in constant flaring. As my flares vary throughout the day and are much worse in the evening, I don’t seem to fit their idea of what an EM sufferer looks like (of course, I have shown them lots of pics and my hematologist actually provoked a flare).
Now, I’ve read quite a few studies/reviews of EM and all mention intermittent flaring, often for about 1/2 of the study participants. Has anyone else experienced this doubt? If so, how have you handled it? I almost feel like I need to present them with scientific research that demonstrates intermittent flares are common with EM. Can anyone recommend an article or other evidence I can share?
Note: all of my doctors think I also have an autoimmune condition but haven’t figured out what, which may be why they are “doubting” my presentation…
What you are describing is secondary EM. This is me also and everyone I’ve ever talked to. It’s worse at night as our primary nervous system starts to shut down and our sympathetic nervous system takes over. I can take a long walk on a cool morning and barely elicit a flare. Walk even a short distance in the evening, and guaranteed flare. After 10:00 PM, I’m going to flare just sitting doing nothing even if it’s cold. Matters not, I’m going to flare every evening. I don’t have time right now to research but when I did all my research 10 years ago, this was a normal patterns for EM.
All my best,
Actually you may be misunderstanding your docs and are not using the same terms in the same way. There is little doubt EM is intermittent when thats what you have. Constant to a doc doesn’t mean the same thing as it sounds. Constant to them means it follows the same pattern (or is consistent.) With that in mind for EM that means a flare starts gets worse and then ends. NOT that you always have one going on.
An EM flare does not normally wax and wane and then max again over its course. That type of “flare” is usually an autoimmune thing and not EM, though it presents like it. I realize its sounds like splitting hairs but its not. Its two entirley different things though it seems like its not.
One of the things you should keep track of as your flares come and go, is if there is any numbing or tingling (before or after the fire takes over) That would be very helpful information and help seperate it. Another thing to look for as it starts is if the skin is white or even light blue Or if there is periods of white or blue anytime preceding a flare. (This indicates vasodilation)
What you describe is more like a hyperemia phase of an autoimmune vasomotor abnormality. If it is and confirmed shout ALLELUIA, because it is far more treatable than EM. I’m sure you have been asked all of this, but it appears your Rheumy and PMD have some question about it. Thats not a bad thing, it only means they are trying to come up with some treatment that works.
Thanks so much for your feedback, Greg. I have always believed that I have secondary EM…just still searching for what it’s secondary to lol
Thanks so much! I really appreciate you sharing these
Now I’m curious (and slightly confused), you mentioned that the existence of tingling/numbness would help distinguish between EM and an autoimmune disorder - which condition would the symptom of tingling indicate?
Wow! I did not know that about the term, and it was extremely helpful. Interestingly, it is suspected that I have autonomic dysfunction (SFN to be exact). I don’t think I get vasodilation, but I do get cold feet/hands…but they’re not really blue or white. I tend to keep a red tint, especially in knuckles on my hands and my toes/feet.
I see a neurologist in June, so I’m hopeful she will be able to investigate this more. While it seems like EM (it’s red, hot, burning, gets better with elevation/worse with heat, and no fun), I’m in no way tied to the diagnosis. I know in the autoimmune world a lot of things mimic other things.
Again, thank you so much for this new perspective. I think their comments made me feel like they were doubting me, but your comment made me look at it from an entirely different perspective. This last year has been a whirlwind of pain and dismay, trying to identify what’s causing my EM or EM-like thing. Making things more frustrating, I have SO many specialists and none of them know what’s going on or how to help. I really can’t tell you how thankful I am for your comment, as it’s made me reframe their comments in a much more positive manner
Wow this is great info for all of us to have! I appreciate you sharing it. That one term ‘constant’ is making a difference in explaining the symptoms and helping to pinpoint a diagnosis. I’ve also told my doc that my flares are not ‘constant’ meaning I’m not flaring 24/7. My EM has been fairly consistent (meaning there is a general daily pattern to when I flare up) for a couple of years now. But just in the past week, I’ve experienced some unusual symptoms, such as flaring 24/7 in just a few toes with swelling in those same toes almost to the point of blistering. And now after several days of that I am blessedly at this very moment completely flare free. If these symptoms return, I’ll be wondering if I actually have EM and something else or something else all together.
Are you saying that EM flares do not ever include tingling and numbness? I have recently been diagnosed with EM. My doctors are beginning to think it must be primary because they have ruled out myeloproliferative diseases as well as autoimmune diseases. But I sometimes experience tingling and numbness in my feet while flaring; I haven’t yet had it while my hands are flaring. I have been seeing a hematologist, rheumatologist, and cardiologist. Do I need to see a neurologist as well to make sure this is definitely EM and not some kind of neuropathy? In the evenings I also experience one burning hot foot and one icy cold foot at the same time. They are both red when this happens; my feet have never been blue or white. Does this sound like EM?
There are thought to be a number of causes for EM Small Fiber neuoropathy is one of them (and by some considered a separate condition) Tingling and numbness are one indication. In which case there is some pretty effective treatment The Cleveland Clinic (and I’m sure the pun is intended Class it a burning problem Diabetes is is the most common cause, but there are others. If you read through the article and navigate the medical gobbldygook, one of the things they describe is how it often gets worse the further you get from the brain ie what @Marci describes. FWIW, I’m not sure that a neurologist would be better at treating it than a GOOD rheumy. The medications are actually anti-siezure meds (+ a couple of new classes) Rheumys routinely use them as do a growing number of multi disciplinary pain specialists. Their experience is invaluable.
I’m not saying its easy or a slam dunk, but we have members in some of our other communities reporting success with as little as 30mg of Gabpentine at bed time IF this is the case.
Rheumatologists are the detectives of the medical world. In the old days we used to refer to diagnosticians. That what Rheumies are but on steroids. If nothing else they can get you to the right place. Being detectives and all the more clues they have th better they work. When you are in pain,generally miserable, a ton of things going on, what we think is information is more often complaints. The more specific you can be with everything you can rember like white, tingle numbe etc. The better off they are. They KNOW you hurt and are on fire, but there is so much more including where you don’t hurt if that makes any sense.
Thank you for the link to the article about SFN. Very interesting! I will definitely mention that at my upcoming doctor appointment next week. Unfortunately, I have already tried Gabapentin with no success.
Certainly in my case my rheumatologist was the one that found out what was going on with me. I do wonder if I have ever had EM or if it can be secondary. He discovered after years that I had rheumatoid vasculitis caused by rheumatoid arthritis. I had infusions of Rituximab and the results were brilliant. I do still have occasional flares but previously it was constant. It was pure fluke that my EM improved the reason for the Rituximab was that I had loads of ulcers on my feet and legs, one of my legs had to be amputated. He didn’t do it to make my EM better.
So, as ModSupport said rheumatologists are a good place to go.
Sorry to belabor the point, but just to clarify - is tingling/numbness mutually exclusive to EM secondary to SFN or can it also be present in idiopathic primary EM? I get tingling with every flare.
Thats for your doctor and you to figure out. It is a symptom that raises questions, but single symptom has litle to do with an accurate diagnoses.
I had one good Rheumy…the rest were the most horrible doctors I have ever dealt with; big-headed know it alls who didn’t care, and they didn’t want to be bothered if it wasn’t shown on a lab test. The one I have now is useless as well. I had one tell me that her WBC count was low too but she wasn’t sick so why should I be.
So how low was your WBC? Most Rheumies would be thrilled at a a low one. But you are right, they are pure scientists and have the personality of a cardboard cut out. I can remember a conference years ago in Las Vegas and Willy Burgdorfer was speaking to a group of them about some immuno therapy developments. Asked him how it went. It went fine according to him, although he rarely was around a group that “went so deep and came up so dry, but that was fine there was cathouse on the edge of town that could hold his hand and make him feel great about himself” although I have to admit he was one who frequently said show me the data. It’s how pieces of data go together. Other than STD’s and x-rays of broken bones there are very few stand alone “tests” but rather a collection of data for a conclusion.
It was 4 on a range of 4.8 to 10.8. The thing is I had already been dx’d with SLE once and again recently I have been dx’d with SLE. and I agree with you, some have the personality of a cardboard. I do believe that Rheumy’s are overwhelmed. There are a lot of sick women with autoimmune disorders that, although considered mild to the doctor, really effect the quality of living, despite how we look and how our blood work comes out. My CRP is always normal, ANA is positive and only this time did the Anti SSA test positive. I stopped working in my 40’s due to being so sick but no diagnosis. I had so many issues; migraines, my feet, sinus infections, stomach issues…etc. My daughter has Hashimoto’s and the Endocrine doctor said I probably had it at one time, but now I’m left with 27 thyroid nodules and intermittent hyperthyroidism. I don’t have much faith in medicine helping her and worry about her future.
There are a lot folks walking around with no thyroid, although a bad one is better than none for most. A word about chemistry. A normal range such as 4.8 to 10.8 is what 1 standard deviation represents or 67% of the population based on the average of the whole population. If you fall out of that range and you get that (H) or (L) next to your score that doesn’t mean you are abnormal. In the case of WBC, it’s not abnormal until it gets to less than 4.
Your count may elicit a hmmm, but until you have additional tests that drop lower than that, it has little meaning. The same works on the higher end.