Not Diagnosed Yet - Rheum Dr. Visit in a Few Days

Hello, new to this site/forum, 33yo male from southern New England.

As background, I have not been diagnosed with anything but I for awhile have experienced Reynaud -type symptoms often when exposure to cold where fingers or toes completely lose their color. Never really hurt - never thought of it as anything more than slightly amusing. Also a couple of winters I have gotten very painful/sensitive bumps after exposure to cold that seemed to be indicative of chilblains.

Over this winter, started to get swollen hands, more on right side. Have visited primary care doctors and left with a couple of ointments including some very strong ones. They have done nothing - if anything just make me feel worse as well as slimy.

The doctors originally thought it was eczema, and said to wait until the weather got warmer and use said ointments.

Within the last month or so, the symptoms have changed from a consistent swollen state and dryness/cracking being the worst issue to now the on and off red, burning, inflamed hands. This happened significantly on the two hottest days when I was outside for awhile. But it also happens on and off while I am inside. Just comes in a matter of moments. And yes the cold water provides temporary relief. We’ve had a cool spring but on the two warmest days (Easter and then about 10 days) ago we hit low to mid 80s and my hands flared up (red, swollen, etc.)

I’m trying to get as much information as I can through the help of these forums, other sites, and YouTube videos like from Mayo Clinic. When looking at different possibilities, EM seems to match my symptoms most yet no doctor has mentioned that and we will see what the Rheum doctor thinks later this week. My PCP thought it was psoriatic arthritis most recently and I thought that might make sense, but I do not feel joint issues at all. The burning/itching/redness is 98 percent of the issue.

I had two main questions that I haven’t been able to find information on:

  1. With EM, are your hands or feet (for me its hands) ever “normal”? Because in my case, my fingers are significantly swollen, particularly the right one, all the time. They are never normal sized as they were prior to December or so.

  2. Would it be normal/heard of with EM to have had a period first of 2 or 3 months where there were other symptoms disruptive enough to cause doctor visits but the flaming characteristic did not really start until about 3 months in.

I have tried to attach a flare picture with no real obvious cause below. I almost feel like me hands get even more red at their worst than a lot of the other people who post their pictures. Yet, I cannot really say I’m experiencing what I’d call pain…inflamed, burning, itchy, swollen, and bizarre but not really painful.

Thank you for reading!

I will reply to your two questions with what happened to me.

  1. Yes, I did have swollen fingers all the time, but I do have rheumatoid arthritis so it’s confusion whether it’s the EM or my RA.

  2. I also had symptoms before the redness, but pain affected by heat.

That looks very intense. Are your fingers swollen there? I can’t really tell. Any swelling is much more modest than the redness.

To answer your questions:

  1. Prior to treatment my affected area (which happens to be my knees, not my hands or feet) was almost never normal. I do not get swelling, but the erythema was almost always present in some form.

  2. Yes, I had disruptive symptoms prior to the onset of the erythema that caused me to go to multiple physicians.

Thank you both for your responses - they are helpful.

Yes, in that picture my fingers are swollen. I normally have relatively thin fingers so the swelling might not seem overwhelming in the picture. But really the swelling is there all the time and then increases only a fraction during a flare-up. The redness is what comes and goes depending on whether I am having a flare-up or not.