Progress of the disease & worst case scenarios

General
1

Hello,

After extensive tests and labs in all kinds of hospital depts., I was recently diagnosed with EM (no underlying, primary systemic differential so far)and heavy cardiopathy due to untreated high blood pressure

I am at a stage, where I can no longer be upright for longer than a few hours a day without my feet exploding to the level of purple toes and outright blisters from the accumulated fluid. Sitting slows down the process, but only laying flat stops it. I thus at the moment seem to be able to manage the illness, even though I feel that slowly but surely the "active" time per day is reduced. Just walking 800 feet to the nearest grocery store will immediately result in swollen feet and purple toes. One of them oftentimes feels numb as if I was suffering from severe hypothermia. Other than that I manifest pretty much all the symptoms you'll talk about (flares, burning, pain,nighttime glowing feet, cold water relief etc.)

I also experienced in parallel to the development of EM strange symptoms at the very same time (loss of sight, total exhaustion, jet lagg like fatigue and vertigo.)

The doctors here in Switzerland tell me, that there is no cure. The specialist actually prescribed vaseline and keeping my feet warm at all times (N O cold water baths and certainly no ice).

What is the progress of this disease? (Amputations of toes and limbs?)

What's with the terrible itching and the brown spots on both hands - part of EM?

After just a little walk, stiffness, swelling, numbness rises up to almost hips... is that normal with EM?

How bad can this get?

I manage so far barely, but am borderline incapacitated, as, while I write these lines, my feet are visibly swelling up and my one toe is already numb. If this degrades anymore, I might as well put a bullet through my head, as I do no longer know, which symptoms are attributable to EM and which to 15h/day having to lay down.

No doctor here seems to be willing to give me a straight-forward, honest answer as to the progress and possible worst case scenarios. I can accept, if there's no cure, but, I need to know, what I am facing.

Anyone out there, further down the progress of this truly annoying condition, who can give me an honest, realistic outlook, would be highly appreciated.

My heart goes out to all of you - this truly is a shit sandwich...

2

Hi Stone this is truly a horrible disease to have and i hate to say but there really isn't any right or wrong answer for you questions....we all react different to it. I have had it for almost 5 yrs now and and now on disability, had to quit school and stop doing the things i had planned for my life. EM started in my hands and about 3 yrs later my legs and feet. some days i can barely walk or use my hands. i finally got my doc to approve a handicap licence plate for my car. and i use a wheel chair when i need to. we all have to find ways to cope or we will go crazy. giving up is not a option.

3

Hello Nikki,

How kind of you to respond. Btw, my name is Michel (in the US Michael), Stonewall is my pseudonym under which I am known as a political bloviator...

Anyhow, if I understood you correctly, you are one of the poor sods who got it early in their life, hence likely as a primary condition.

What a shame indeed. I lived a pretty adventurous life myself, and can hence certainly not complain, even though I had quite a few things left on my bucket list. So much for early retirement, eh? (Humor is, if you laugh, even if the joke is bad...)

My impression is, that, while the root causes for the disease (primary or even more, if secondary) are legion, hence the diagnosis and therapy seem to be in their early stages of reasearch, the symptoms however seem to be pretty consistent. What I have learned here and on other boards, leads me to believe that we all very much suffer from the same symptoms, albeit to varying degrees, horizontally as well as vertically. (x amount of symptoms (horizontally), various amplitudes (vertically).

I wonder, if you minded to tell me about your progress of the disease from early symptoms to the level which forces you now to use a wheel chair at times, so I know what to prepare for. Please do not force it, take your time and most of all do it, when your hands do not hurt. I have a strong feeling that this might help a lot of people like me, as only sick people understand, that the cold hard truth is much preferred to false hope and disappointment. Along the line of ripping a bandaid off quickly, an end to the terror instead of terror without end.

As far as I am concerned, I must be still in the early stages with almost uniquely my feet being problematic. My fngers look like wieners ( sorry, Anthony, no pun intended), my hands itch like hell at times, but I can still type away on the keyboard like a dervish. But those darn feet force me to lay down for most of the time and I wonder, if that forced upon inactivity causes now these strange other problems....

What did the doctors tell you? Are the feet going to swell up and swell down until at one point the circulation breaks down completely? I have this nagging fear that a few of my toes are close to the stage of having to be cut off, if I only once miss the deadline of laying down in time for them to recover......which isn't condusive to plan any outing farther than 1 mile.....

Are your symptoms worse during (hot) summers? Are you more mobile, when the weather is colder? Has your illness reached a point of stagnation or are you still getting worse? How do you manage the illness?

And now for the motivational bit - Hell yes do we not give up. No way, no how. That's unamerican, right?. So we find ways to occupy our busy intellects. Take trips in our minds (God bless the internet too). You are still able to drive every once in a while. Please take a trip for me down my beloved PCH and have a toast on my in Paradise Cove. (If you live in SoCal)

If not, keep on going to the most beautiful places you love in your area and enjoy every darn minute of it. We live, we breathe, hence it is our obligation, our responsibility and our debth to make the very best out of every single minute. Uahh!

Big hug and tap on your shoulder from a stranded American.

Michel