Not sure if I have EM, but long list of symptoms and undiagnosable condition

General
1

Hi everyone,

I have been reading here off and on for a month or so, trying to figure out if what is going on with my body might be EM.

Background: In the summer of 2012 I was sick with a long list of symptoms that would come and go. They were debilitating and after months of tests and doctor visits, I was finally diagnosed with chronic complicated migraine. I have struggled with "migraine" symptoms since then, sometimes having periods that are much worse. My migraines, however, don't fit any typical migraine stages and some of my symptoms don't particularly seem to fit either.

Summer of 2013 I had a bout of a month of being pretty miserable, but then improved again.

This summer, along with my regular "migraine" symptoms (a list of about 40), I developed a new symptom: Periodic swelling veins. I'm not sure that I have EM, but after doing tons of searching, it's the only thing I can find that explains why my veins swell out/bulge and are painful at night, every night, and are worse when I'm exposed to heat. I have had red/hot feet on a few occasions, as well as a few week stint of painful flushing of the face off and on, but don't have redness or swelling of extremities as a primary symptom.

I'm hoping that some of you may be able to help shed some light on if I'm going down the wrong track with thinking this might be EM. Also, I have yet to find a doctor here who really knows anything about it when I mention it to them.

Start of vein issue that I suspect might be EM: At the beginning of the summer I noticed that at night (and sometimes when I first woke up in the AM), the veins on my legs would suddenly start protruding. Sometimes my hands were mottled, like there was too much blood in them. It came and went, seemingly randomly, for a month or so.

I had two occasions during which my left foot would turn a dark red/purple color off and on for a day or two.

Then one night in June, the veins in my right shin developed a bruise (I didn't hit it on anything) and were all protruding and burning. My primary didn't think much of it. It started happening EVERY night. Then it started happening in both shins, with burning/stabbing pains. Over a matter of weeks It spread to my hands, then one forearm, then my neck, the other forearm. It started happening off and on throughout the day, but was constant and worse every night. Being in the heat seems to make it worse.

The only relief for my feet, legs and hands is elevating them. During the day I get purple spots on my knees, one of my feet, and a purple lacy pattern on my forearms.

I have a lot of other symptoms, some of which seem to also be some sort of vascular dysregulation. It really feels like I've got surges of blood happening all over my body sometimes. I have the stabbing pains with what feels like blood vessel swelling all over my body - including in my eyes. Accompanying it sometimes is a tremor. I've been to see specialist after specialist this summer, with more pending.

I'm desperate for relief and a diagnosis.

If anyone can shed any light on this based on their knowledge and experience - does this sound at all like EM(?) I'd be very grateful.

2

Welcome Vermonter,

There is lots of info here, i have found. And wonderfully supportive people. I was diagnosed with EM and also POTS by a vascular diagnosticisn.

I hope you find some answers,

Blue

3

Hello again Vermonter. Have you tried using the search box on the Discussion page? If you type in ‘bulging veins’ you will see that they are very often mentioned and you may be able to do some comparison with your symptoms. EM manifests in different ways in different people so don’t expect to find anyone with exactly matching symptoms but there may be many similarities. Many of us have also found that symptoms change through the years. I didn’t have regular facial flares for instance for two years after I began having burning feet.

4

Thanks for the welcome. I've read some of the info for new members, but will check it out again. @Nel: I just used the search box for bulging veins and read several topics, including some with pictures. Thank you! Yes, that's what my veins look like. It's spread throughout my body in a matter of weeks. Obviously, I can't see my internal blood vessels, but it feels like this same pain is happening everywhere inside of me.

I also have some symptoms that don't fit EM (dizziness, tinnitus, diarrhea, weight loss, hair loss, tremors, headaches, etc.) Can EM happen everywhere inside of you? The symptoms all come together.

5

Hello Vermonter.

I am sorry to say you sound just like myself. Keeping in mind I am not a doctor and can't diagnose you it sounds as if you could be on the right track and it is definitely worth perusing with your doctor. Everyone's EM is different both in symptoms and in effective treatments. Yours sounds an awful lot like mine and it sounds more complicated than just EM. It sounds more like a neurovascular instability where you have symptoms on opposite sides of the vascular system from EM ( burning , swelling blood vessels ) to lavido reticularis ( purple mottling like a web on your skin) This also often is accompanied by Raynaud's /Pernio ( loss of circulation in your hands and feet causing numbness and color change ,White ,purple, red, often caused by cooler temps.

Mine started ever so mildly almost 15 years ago. My first symptom was a partial blue hand without pain. I thought I had ink on my hand at the time. The next day I had light headed almost dizzy spells. I then started seeing stars periodically only lasting about a minute at a time and developed a large amount of dark lines and squiggly lines/ circles in my vision that are there now most of the time. Doctors told me my eye problems were normal that sometimes the blood vessels burst in the eyes causing floaters. I now know mine are probably caused by my vascular disorder. I have hundreds in my vision where most people that have them have 1-3.

Shortly after I didn't know why but my blood vessels in my hands started bulging and hurt mildly. It never lasted long and wasn't too painful. My doctors just kept telling me everything was normal and my symptoms weren't severe so I just accepted it and went on about my life.

Fast forward 10 years and out of the blue things just got worse and quickly. It all started one day I started having pain . very bad pain in my back and right leg. Turns out I had a large DVT in my leg and they dismissed the back pain to coincidental. They could find no reason for clot after testing so once again just tried to go on about my life. In the weeks that followed I started having pains all over my body and gastrointestinal problems. Then the burning started in my hands and feet with bulging blood vessels. I didn't know heat as a factor. It quickly started spreading up into my fore arms and up my legs. I started getting this awful pressure with burning needles/ stinging sensation in hands and feet. Then burning on my face, knees, arms, eyes, tongue.

This was in a matter of a couple of months. Then I started getting Raynaud's and pernio in my feet along with levido reticularis all over my body. I could have both opposite ends at the same time such as numb cold hands with burning feet. I went to my doctors appointment and I was covered in purple webbing all over my body but his office was kept at 70 degrees. Right before my doctors eyes the red burning started over taking my body covering the purple webs. Finally my doctor believed me because he saw it with his own eyes and he sent me straight to the ER.

With the burning I get that stabbing you speak of as well as cramping in my hands and feet. I have many other strange symptoms as well. That being said all I told you is not EM per say. It could be whatever is causing my EM is causing everything else. We have yet to find that answer. Burning being worse at night is very common with EM so that doesn't surprise me. This is just my EM and in no way means these things will happen to anyone else. Some people with EM only have it in their hands or feet and for some they can do most things in life and only very hot temps or high intensity activity will bring on those symptoms. There are those that Their EM never changes or even gets better and some who tend to get worse or have it spread.

I invite you to look at my page by clicking on my name and taking a look at my photos. You may or may not find them to be like your own but worth a look. I suggest you take photos of your symptoms both the red burning and purple webbing and printing out a couple to bring to your next doctors appointment just incase you don't have a flare in office. I also suggest you print out basic research on EM to bring to your doctor because most have never heard of it. TEA the Erythromelalgia association has a good brochure you can print out to bring in.

I know most documents say it happens in your hands and feet but I know from experience as well as knowing others it can happen everywhere on and even in your body it is just not as common.

I am sorry you are having to go through this and hope you are able to find some help soon.

I am sorry for the long story. It is too difficult to put in fewer words.

Take care,

Alina

6

It’s hard to say if EM affects our insides too. The literature says not but I know that on a very hot day I feel ill, really ill and I feel it has to be the effect of EM. However the rest of the time I feel really tired from poor sleep but not so utterly unwell and exhausted. As for other symptoms, many of us have symptoms others don’t, in my case severe myoclonic jerks as I begin to heat up late afternoon and I take medication to stop them or I would never sleep a wink. Many of us have thyroid problems and/or Raynauds, the list of co-morbidities would be at least 20 long and thanks to our moderator mads we are doing a series of Spotlights on some of the more common ones. The last one was on EM and Raynauds and the current one is EM and hypothyroidism. We can be very different which is going to make your diagnosing difficult. Some people’s feet and hands swell and go red when they have a burning flare, some just go red and burn. Not everybody’s veins bulge. People flare in different places, just soles of feet or tops as well. Unfortunately there is no yardstick and no definitive test unless you are one of the really unlucky people with inherited EM, usually suffering from childhood, for which there is a test for a mutated gene. A large number of us self-diagnosed and it sometimes come down to ‘if it quacks like a duck etc. it is a duck’. Convincing your doctor is the really difficult bit.

Anyway Vermonter, you are welcome here, with EM or something else, while you try to work it out.

7

Thank you for such a long and thorough response, Alina. I have taken some pictures of purple spots, red feet and lots of vein pictures, because for many of the first appointments I went to this summer (including the ER when it went to my neck and chest), the doctors kept saying "Your veins look normal to me". I'd say "Right now - you're not at my house at 9 pm".

Doctors keep looking at me and not seeing much besides the purple spots now and then. They can't see "traveling stabbing electrical type of pain", or most of my other symptoms. I've had tons of blood work and the only thing that's really off is that my white blood count is high. (not extremely high) and my platelets are borderline high.

I'm sorry to hear about your DVT - I hope that's not a risk for me. During the summer of 2012, while I was having many tests, they found a cerebral aneurysm that they said was an "incidental finding" and not the cause of my symptoms. I had brain surgery (coil embolization) to treat it. The surgery made all of my symptoms much worse (and I gained new symptoms). I'm really worried that all these seeming "blood surges" this summer are making more aneurysms.

I'll look at your page at the info you suggested.

@Nel: I have been having tremors that jerk me awake, sometimes when I'm just falling asleep, sometimes early AM. After the initial jolting I will have tremors for a while, sometimes pretty violently. Sometimes I have a tremor that seems internal, like some sort of machine vibrating me from the inside. I had that two years ago too, and did a bunch of research on it in connection with migraines. (After I was diagnosed with complicated migraine and had such bizarre migraine symptoms, I did a lot of research). Vestibular migraines can cause that internal tremble thing too, so I thought it was that.

I'm wondering if I'm having migraines AND EM - both are vascular regulation issues. But again, all symptoms come together so I keep thinking that whatever is causing it is causing all of it.

At the moment, doctors are looking toward endocrinology, since I'm also losing my hair and having BP spikes. I have an appt with an endocrinologist in Sept.

Thanks again for the welcomes!

8

Hi Vermonter,

as well as EM, i have 'chronic daily migraine, POTS (Postural Orthostatic Tachycardia Syndrome, a form of dysfunction of the autonomic Nervous system) - all three conditions diagnosed by specialists but i dont believe they are really separate problems, anymore. I think they are part of a 'whole' - I just don't know what that 'whole' is. And I've got the inner vibration thing going too. I wake often during the night and will either be too cold, too hot, have em burning, migraine or that inner vibration feeling. I always wake with one of the sensations. I can honestly say I never wake feeling physically well. The inner vibration feels like excess adrenalin. When my EM is flaring I also feel like i have extra adrenalin tearing around my body.

Some people with Erythromelalgia have an inner trembling or vibration feeling, some peple eith POTS have said they have it. It would not surprise me if it happened in connection to migraine too.

I go through periods of getting the occasional myoclonic jerks which I consider normal but occasionally I'll experience repeated myoclonic jerking when going to sleep. I also now get a lot of muscle twitching when I relax. This started happening around Christmas time last year. I put it down to an adverse reaction to a medication but now I'm not so sure.

Blue



Vermonter said:

Thank you for such a long and thorough response, Alina. I have taken some pictures of purple spots, red feet and lots of vein pictures, because for many of the first appointments I went to this summer (including the ER when it went to my neck and chest), the doctors kept saying "Your veins look normal to me". I'd say "Right now - you're not at my house at 9 pm".

Doctors keep looking at me and not seeing much besides the purple spots now and then. They can't see "traveling stabbing electrical type of pain", or most of my other symptoms. I've had tons of blood work and the only thing that's really off is that my white blood count is high. (not extremely high) and my platelets are borderline high.

I'm sorry to hear about your DVT - I hope that's not a risk for me. During the summer of 2012, while I was having many tests, they found a cerebral aneurysm that they said was an "incidental finding" and not the cause of my symptoms. I had brain surgery (coil embolization) to treat it. The surgery made all of my symptoms much worse (and I gained new symptoms). I'm really worried that all these seeming "blood surges" this summer are making more aneurysms.

I'll look at your page at the info you suggested.

@Nel: I have been having tremors that jerk me awake, sometimes when I'm just falling asleep, sometimes early AM. After the initial jolting I will have tremors for a while, sometimes pretty violently. Sometimes I have a tremor that seems internal, like some sort of machine vibrating me from the inside. I had that two years ago too, and did a bunch of research on it in connection with migraines. (After I was diagnosed with complicated migraine and had such bizarre migraine symptoms, I did a lot of research). Vestibular migraines can cause that internal tremble thing too, so I thought it was that.

I'm wondering if I'm having migraines AND EM - both are vascular regulation issues. But again, all symptoms come together so I keep thinking that whatever is causing it is causing all of it.

At the moment, doctors are looking toward endocrinology, since I'm also losing my hair and having BP spikes. I have an appt with an endocrinologist in Sept.

Thanks again for the welcomes!

9

I had so many of my complaints well in place before EM started, migraines and connective tissue disorder, osteoarthritis, restless legs etc. that I have rather tended to see them as separate illnesses. I had a thyroidectomy 30 years ago and a parathyroid excised 10 years ago after a year of feeling dreadful. Raynauds I have had since I was in my late teens and asthma since babyhood. The only conditions I connected to EM were the ones which happened concurrently in my late 60s: flares obviously, adrenaline surges, vertigo episodes, urticaria and all over heat and continual (every 20 seconds) whole body myoclonic jerks which could knock me off my feet. Now I am not so sure what belongs with what and am used to living with the lot of them except the jerks which were so severe that life was unbearable and I take clonazepam to control them. I now have heart trouble to throw into the mix but that is the result of my recent accident and the 5 hour operation to fix my leg/knee during which I had thyrotoxicosis.



Am I perhaps mistaking inner trembling for adrenaline rushes? The doctor dismissed them anyway but I hated them. They felt just like the rush I would get if I had a near accident in the car for instance. They woke me every night, sometimes multiple times for 9 months and now just from time to time.



I tend to think I am doing fine by trying to avoid the situations which make EM flares so very painful but in fact all the rest is still going on and is just part of my life.



At least my leg is healing 5 months on:)

10

Nel,

I 'get' how you think you are doing fine unless you are flaring with Em even though 'all the rest is going on.' If I have a migraine and EM free day I feel that way too. Even if I am housebound with Orthostatic intolerant, for example. I may be extremely dizzy, unable to stand for more than a minute or two, but as long as it is not causing me a lot of pain I feel I'm doing okay. Which is a crazy sort of 'normal.'

blue

11

After I had my accident I was bedbound pretty well for almost two months and the pain was such that I coped with flares just by draping wet wipes over my feet as there was nothing else I could do, but the pain from my leg outweighed the pain from my feet and somehow diminished it. Now that I am on my feet there is no way I could stay in bed through a flare!

One interesting thing though is that my arthritis in my hands is severe with nodules and swelling and I had been having regular injections of steroids but since I have had EM the pain has reduced such that I don’t even need painkillers, let alone injections. My rheumatologist who has known me for 20 years is disbelieving. The fingers are still all gnarled and knobbly but minimal pain. Every cloud has a silver lining.

12

Hello again. Thanks so much for all the responses, and making me feel so welcome. I've had many more doctor's appointments and tests, and even more symptoms, since I posted last. It's been a whirlwind of being sick and poked and prodded, but I have a diagnosis. (three, in fact). I'm still not sure if I have EM, as some of those symptoms have reduced (weather has also gotten cooler), and been overshadowed by the rest.

I've been diagnosed with Sjogren's Syndrome, dysautonomia (still waiting on the autonomic nervous system tests to confirm) and Small Fiber Neuropathy (confirmed by punch biopsies).

I've been really sick and with so much going on, it's been hard to tell what is causing which symptoms. I'll see a rheumatologist this week, and have autonomic nervous system testing in the beginning of October.

I'm exhausted, scared and overwhelmed about what this all means for the future. I'm also pretty depressed, knowing that I'm facing a life-long battle and may never be "myself" again. It's comforting to have a place like this that is so welcoming.

13

Dearest Vermonter,

I am so sad to hear how hard things are for you - bless you. Three diagnoses !!!!!!!!!!!!!!!!!!!!!!!!!!!! ((((((Vermonter))))).

Small nerve fiber neuropathy is EM by any other name. Did you have dermatological skin biopsy for chronic urticaria - heat allergy too by any chance? Any sweat testing?. Many of us have a conglomeration of several conditions under the EM label. Many of us do not have the 'classic EM' presentation. Symptoms go far beyond red hot 'lobster' burning pain , edema etc... If you would like any information on all of the conditions you mention just let one of the mod team know :)

Please let us know how things progress.

We are all thinking of you

God bless

mads

14

Hey Vermonter. I was living in Burlington when my EM began, and I was unable to get a diagnosis there. I even had two doctors each tell me that I must be mistaken about my symptoms, because "there's no such thing as what you're describing. It's probably Raynaud's." There was a neuro specialist, Dr. Fries, who knew EM existed, but he had never seen it, so he also couldn't diagnose it. I don't know if you have EM or not, but perhaps he could help you? He was a better listener than the other docs I saw there, for sure.

15

Yes Vermonter. As Libbyk mentioned a key is finding simply a doctor who will truly listen and believe you without dismissing you and calling you crazy. This can be a challenge sometimes. Just never give up and if one won't help don't waste your time there anymore and find a new doctor. This may be necessary again and again before finding the right one. This may be a GP, neurologist, Rheumatologist, Vascular specialist, Dermatologist, are just some of the possibilities.

It helps to bring printed literature on EM as well as photos. I hope you have found someone as your post was a few months ago. Please let us know how you are doing.

Take care,

Alina