Feeling Hot, Hot, Hot

Just when I think I'm managing my "new normal" something unexpected and significant interrupts my well-being.  My hubby asks, "when are the locusts arriving?"

This past spring, my toes, feet, fingers, and hands began to behave in a most unusual way:  they would turn red, swell up, and itch like crazy.  It starts with a tingle, then the tissue would rise before my eyes.  Remember those pieces of cardboard that turn into sponges when dipped in water?  

The first couple of months, the swelling would occur in one limb for a couple of days and then disappear, only to "re-emerge" in another extremity.  It was unpredictable and painful.

I was put back on prednisone because it's considered "the gold standard" for inflammation.  I was in so much pain that I agreed to take it despite my previous experience (a full-year of me becoming an irritable, annoying, and extremely overweight insomniac).  I was desperate!  
I tried it for 3 months;  at first it seemed to reduce the swelling, but after a couple of months it made no difference. We had to try something else.

I share these pics with the following disclaimers:  Yes, I know that I need a pedicure.  Yes, my feet could easily make Time magazine's "Ugliest feet in America" award.    

The foot tissue swells, itches & burns.

See the difference between the swollen right foot & the unaffected left foot?

Side view of both feet.

The inflammation seems to bounce around from foot to hand to foot to arm.  When my feet are inflamed, walking is extremely painful.  

Now, take a look at these ever-attractive hands:

Ring finger swells into hand.

 

Top of hand swollen, but not red.  Weird!

Hand & fingers so swollen I can't hold anything.

Right hand swollen & thumb burning red.

    

Right hand & joints swollen and sore.

When both hands are inflamed, major ouch!

In addition to the tissue inflammation, the joints became involved.  When the joints in my hands, knees, and feet are involved, my mobility is severely limited.  

Thus began a six month journey to find out what the heck is going on and what can be done to make it stop.  

I was tested for Rheumatoid Arthritis (because the inflammation had a symmetrical pattern on the extremities) and that came back negative.  Gout was also ruled out.

My rheumatologist confirmed that these symptoms are not at all related to the Behcet's Disease (auto-immune).  My Behcet's symptoms are well-managed with regular infusions of Remicade.  I also learned from others living with Behcet's that this is not one of their experiences.  

Through the great world wide web of support groups for people living with Polycythemia Vera and other MPNs, I was encouraged to pursue a line of questioning for Erythromelalgia (EM).   I brought the information (and photos) to my internist for consideration.  His research confirmed that these symptoms can occur as a result of the PV.  

The Erythromelalgia Association (www.erythromelalgia.org) provided some helpful information and links to other resources, including EM patient groups.  Once again, here's  a rare, odd chronic health condition that has no clear treatment.  What works for some doesn't work for others.  They confirmed that the trial and error path I'm on is par for the course.  

At the doc's suggestion, I apply lidocaine patches to the areas at the earliest sign of inflammation.  This helps to mitigate a full-blown inflammation for the area covered, but sometimes the swelling occurs above or below the patch.  I've also been taking antihistamines (both H1 and H2 blockers) and Colcrys (the now-expensive colchicine, an anti-inflammatory med) all to no avail.

After five weeks of continual swelling of hands, knees, and feet, I was ready to jump.

One day when my hands were swollen, I drove past a Chinese foot massage shop and decided to check it out.  Foot reflexology can be relaxing at worst, and curative at best.  Using my smart phone, I checked out the reviews of the foot massage place.  I decided to give it a try.

I must say, after the one-hour reflexology massage, I was relaxed and in less pain.  I went back the next day for more.  It didn't cure, but it does feel good!

When I showed these photos to my niece who is a chiropractor and acupuncturist in California, she said that they are signs that I have too much heat in my system.  I decided to find an acupuncturist in my area who could help me with this. 

I had my first appointments last week with Leena Sikand-Cook of Healthy Body and Soul clinic in Lawrenceville.  Leena explained that Chinese medicine is about keeping the body in balance.  She read my pulses and indicated that my blood has too much heat.  

Here are a couple of pics my friend took of me during my second appointment.

Please ignore all my chins!

These needles don't hurt a bit - really!

She also pricked the tips of my fingers and toes to get a few drops of blood to escape.  I'm going to give this some time to see if it will provide some relief.
Stay tuned...