Concerned but not Quite Diagnosed

Welcome New Member Introductions
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Hey everybody,

I am relatively new to this forum. I found this group after I got diagnosed with EM in October by a rheumatologist. It’s great knowing this type of support is available. I have a fairly unique situation as I lay out below, but I feel it cathartic to just get my story out there.

My symptoms began concurrently with a fairly serious viral infection in August, which developed into a type of post viral syndrome with ongoing fatigue, nausea, dizziness, and strange appetite issues, along with a host of vascular symptoms. Since the aforementioned rheumatologist didn’t offer anything in the way of explanations, treatment, or anything additional tests, I sought a second opinion with one of the country’s foremost EM experts (I live in the Northeast US and fortunately have easy access to excellent heathcare). To my surprise the neurologist overturned the EM diagnosis and informed me that I am suffering from a “post viral syndrome w/ autonomic involvement”. He says all of my issues will completely resolve, but that it will take quite a bit of time (1 – 2 years) since nerves take a long time to recover after being impacted. Basically he just told me that my autonomic nervous system is overly excited and needs to settle down.

While this is obviously a very encouraging prognosis, I still find myself having some doubts and certainly some struggles. The fatigue type issues have been abating (far from gone though), however I have a host of vascular issues, some of which are very much in line with those seen in EM and maybe some that aren’t. My body, particularly my feet tend to get very cold for no reason, especially when sitting. Similar issues with my nose, ears, and knees. In fact if I sit still too long my feet will actually start to get this cold burning feeling (no color changes as those seen in Raynaud’s though). That was actually my very first symptom – a cold burn. I usually put on very heavy slippers or even run them in warm water to deal with this. Sometimes that doesn't even work. I also have a lot of issues with blood pooling in my feet and hands, and even my face if I sit for too long.

On the EM side of the scale, my feet will flush and swell and get really hot with moderate activity such as walking or jogging. At night it’s almost a given as soon as I go to bed my feet will get really warm and flush and swell a bit. Ditto when I take a hot shower in the morning. When my feet “flare” it is not accompanied by any pain, itching or any pins and needles. It’s just generally uncomfortable, really uncomfortable at times. Other than right before bed, any hot symptoms I have tend to clear on their own once I remove my shoes and socks– not much of a need to cool and elevate although those things do work well.When it's my nose and ears just a quick walk to the kitchen and back tends to get the blood circulating properly again. I find myself constantly engaging in all types of behavior to manage the symptom of the moment though!

Anyways that is my story. I think it’s still TBD to see what happens, but I am trying hard to stay positive and believe in my Dr's diagnosis. I am still holding down a very demanding job, but my social life and extra curriculars have basically been on hold through all of this. I am only 30 and was in the best shape of my life, with a very healthy and active lifestyle prior to all of this.

So thanks for listening! I know I kind of rambled. I wish everyone happy and pain-free holidays!

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Hello Dapper425.
I hope the neurologist is right but as you said it’s too soon to tell. If it’s not gone in a couple of years you will have your answer. I don’t mean to alarm you. Just because this is happening to me doesn’t mean it will happen to you. I too have the cold lack of circulation in my extremities. As a matter of fact that is how it began. My hands and feet would be so cold I would have to wear gloves 24/7 and double socks! Even in bed while sleeping. Thee was no color change just several moths of non stop cold extremities. I joked with my doctor about having to wear gloves with my swimsuit! Then I got a blood clot in my right leg. It was treated with blood thinners for 6 months and the doctors thought it was just a fluke because my blood work came back normal. Then I started getting red swollen burning skin all over! Hands,feet,legs,arms,knees,face,ears,chest,scalp,and even my tongue! Never all at the same time. A few of them team up and act up more often for a few months then they switch and a few different part act up. They cycle through different severities over the last 3 years. The cold hands and feet turned into Reynolds in my hands and pernio in my feet.they come and go in severity as well. Then last year I got another DVT this time in my left arm. They say it’s very rare to have one in your arm especially with no underlying cause. My blood work still comes back normal. There is quite defiantly a circulation and neurological malfunction. I was diagnosed with EM and a non specific connective tissue disorder because I also have skin sores,hair falling out and severe gastrointestinal problems. All on top of the circulation / neurological problems. I know you mentioned you too had fatigue ,gastrointestinal problems too. It still could be autoimmune in nature if it doesn’t all go away in the next 2 years. Autoimmune can be triggered by another illness that stresses your body. Weakening your body’s system allowing the autoimmune to take hold. I am not saying it is. I am just saying if it doesn’t get better you might want to get another opinion from another rheumatologist. Even if nothing shows in your blood work. My doctor says up to 20% of people with autoimmune have normal blood work. But if it acts like a duck and quacks like a duck it is probably a duck and should be treated as such! Good luck to you. I really hope your second doctor is right. Hang in the and please keep us posted if you learn anything new.
Alina.

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Alina,

Thank you so much for the thoughtful response to my post. I know it was a long one to read! And don’t worry about alarming me, I think I’ve pretty much experienced every type of emotion already through this roller coaster I’ve been on the last several months lol. I definitely relate to the cold thing. Man I am so damn cold sometimes it’s unreal. I literally sit at my desk day dreaming about going home to take a nice warm bath.

Anyways, I saw my neuro again for a follow-up, and he is sticking to his diagnosis. I am pretty sure I could convince another Dr. that it is EM, but he actually wrote the paper referenced on the TEA website so he is tough to argue with! He insists he’s seen this before in post viral syndromes, but I can’t find anything on the post viral forums quite like this. My concern is that although he is an expert, EM is such a strange and individualized condition that even an expert might not be able to diagnose an atypical presentation. Next stop for me would be the Mayo clinic, which he mentioned as a possibility.

I’ve made a lot of progress on the fatigue side, especially over the last 10 days so I seem to be turning a corner in that regard. Not sure if I have really gained any vascular stability though. I seem to be starting to sweat normally again, so at least I have that going for me :) Also I don’t completely hate wearing things on my feet anymore so maybe that is progress too lol. I feel the most normal while I am at the gym, just doing some light weights and moving around. It seems to make my blood flow more properly and I lose the strange pinkish type hue my skin has developed.

I also get red patches on my body all over the place, but they aren’t really temperature sensitive interestingly enough. They tend to itch and when I scratch them and they spread and then quickly go away. Seems like a histamine type issue (my derm mentioned this). I can’t help but wonder if maybe I have some type of mast cell problem, which others have mentioned here. I’ll perhaps look into this.

I’ve thought about the mixed connective tissue type issues too. So far blood work is way negative, although my Rheumatoid factor has been creeping up but still normal. I think I may have some type of collagen type issue, maybe like a real mild Ehlers Danlos (I’ve always had some hypermobility especially in my hands just like EDS people). Anyways I know self diagnosis is a dangerous game, so I am just keeping these ideas on the back burner for now.

I’ve also looked into Lyme disease and gone down that rabbit hole. That’s a story in and of itself so if you know anyone with any Lyme type questions feel free to have them hit me up. I’ve seen a couple folks on this forum who referenced Lyme. It’s really tough to get a proper diagnosis, and the labs can even be ambiguous. Quite a controversial disease that can cause an array of symptoms.

Anyways, thanks again for the feedback. I think you are definitely right, and only time will really tell. In the meantime I am just trying to take it one day at a time!

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Hello Dapper425. You sound like you have had quite the work up! I went through all of that for a good 2 years before I got diagnosed. I finally got my EM at mayo. Funny , I saw you mention that. Well no matter what the diagnosis you are still going through the same thing and this is still a great place for support. Ps. I think my reply may have been longer than your original post! :slight_smile: take care
Alina

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Your mention of histamine intrigues me. I took Benadryl three days in a row (for other allergy issues) last year, and the first day, I had NO FLARE in my toes that night (and I have flaring every night). The second day, I had a sort of patchy, half-flare. The third day, I was flaring like normal (hah, normal) despite the Benadryl. Man, how I wish that had continued to work.


I also get seemingly random hives (usually just one at a time) and itchy spots despite having tested negative for food allergies (those testable, anyway). Perhaps the hives are related to to the EM or some underlying issue... My blood counts have all been normal so far.


I'll also note that, like yours, my flares are also not usually painful (particularly if I take mitigating measures in a reasonable amount of time), although more severe/long flares do sometimes come with a stinging pain. I had itching of my toes for the first 2 weeks of this disorder, and then never again in the 3 years since. I also have blood pooling issues in my toes (and the veins in the backs of my hands) and notice that when sitting and my toes get that deep chill and dusky look, a walk across my apartment is enough to help.

However, I don't recall having had any viral sickness before developing this. I suspect mine may have had something to do with hormonal shifts (was on several hormonal treatments prior to developing EM, digestive issues, fatigues, and forgetfulness/difficulty concentrating).

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Hi Dapper, just reading about everything here I had one thought that I want to share with you - have your thyroids been tested? If not, I think it would be good to have that done. Hope things improve for you .

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Hi Domina,

Thank you kindly for the suggestion. Yes, I had my thyroid tested at some point during all of this. My mother actually had thyroid cancer many years ago and had her thyroid removed, so I bring that up to doctors in the family history. I am a little uncertain but from what I understand is that symptoms sometimes show up before they do in the blood work, so maybe worth a retest.

Hope you had a nice new year:)

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Hi Dapper. I mentioned the thyroid because you were talking about some symptoms that reminded me of having an underactive thyroid for a few years without knowing - always felt cold, tired, gained weight and my hair started to look dry and frizzy. As a matter of fact my hairdresser told me I should see a doctor about my thyroid because of the condition my hair was starting to be like. When I started EM, my GP said that thyroid problems can cause at least EM-like symptoms and to rule it out she did a thorough check again.

Wish you a Happy New Year.

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My doctor had one of those "ah hah!" moments thinking I had hypothyroidism. Test was totally normal.