WHAT IS FELTY’S SYNDROME?
Four years ago I was diagnosed with Felty’s Syndrome. I was sick for a long time before I finally received my diagnosis.
At the time, I was being treated for a car accident that I had in 2009. I was sore all over my body, especially my left arm and neck, and originally I was diagnosed with a strain.
After I went back to work, I began to have even more problems. One day my feet would be sore and swollen and I would secretly take off my shoes to work. That was hard to do as a mail carrier. The next day my hand would be swollen or it might be my shoulders.
I was then diagnosed with Fibromyalgia. I tried physical therapy, acupuncture, medicines, etc. but nothing seemed to work. It got so bad that I was no longer able to work at a job that I loved.
I couldn’t drive because I could not raise my left arm and I become extremely dizzy when I had to look over my shoulder. I was under the doctor’s care, but it seemed that I was only getting worse. I finally gave up and for over a year and a half, I was pretty much bed-ridden.
I remember one night I was home alone and I had fallen out of bed and I was unable to get myself up. I laid there crying and struggling and somehow my dog made it in between the nightstand and the bed and “helped” me get up. It was amazing and something I’ll never forget. I lost him just two months later in an accident.
Things were happening in my life that was very stressful:
- my son was serving in Afghanistan,
- my husband’s business closed,
- my daughter graduating from high school,
- and both of my children getting married.
Everyone kept telling me I had “to fight this” and I don’t know how many times I heard that it was “all in my head”. All I know was I felt very sick. I couldn’t eat, my stomach was so swollen. I quit having bowel movements.
I went on this way for so long that I honestly felt that I was dying. My husband finally talked me into going to the ER to see what they could find. They ran lots of tests my blood counts had bottomed out. I don’t remember a whole lot of what happened at first.
I remember a doctor telling me I was very sick and that if I had waited another two hours I would have died. I was given three blood transfusions and put into the ICU Unit for two weeks while they ran, as they explained to my husband, every test from A to Z.
I had eleven doctors total. This is when I was diagnosed with RA and I first heard the words Felty’s syndrome, among other things even though it wasn’t completely explained to me then.
My body had slowly been attacking itself killing off my white blood cells until it was almost too late. I admit I was just glad to hear that it was NOT all in my head.
At first, the doctors didn’t think that I would survive, they called my family in. My siblings from SC and FL soon arrived. My son was stationed in Japan at the time and the Red Cross flew him home. I will always be thankful for that.
Felty’s syndrome is a complication of patients who have had rheumatoid arthritis. It is diagnosed by the presence of three things: rheumatoid arthritis, an enlarged spleen, and an abnormally low white blood cell count. Patients with Felty’s syndrome can have more infections than the average person and they can also develop leg ulcers. Felty’s syndrome is uncommon. It affects less than 1% of people with rheumatoid arthritis medicinenet.com
FS is typically associated with severe erosive joint disease and deformity. Rheumatoid arthritis in patients with Felty’s syndrome (FS) almost always appears first and typically has been present for at least 10 years before neutropenia is recognized. Infrequently, however, neutropenia and splenomegaly appear before or simultaneously with the onset of arthritis uptodate.com
As you can see, I did survive. I spent three and a half weeks in the hospital. When I was released we packed everything up and moved to SC to start a new life. My husband had a new job with medical insurance, even though I was considered pre-existing for that first year.
My life is so very different now, it has to be. It is imperative that I stay healthy because my body can no longer fight off infections and that alone makes me more prone to getting them.
My hands, feet, and legs are the worse and sometimes by late afternoon, I can no longer walk across the room. My joints swell up, they become inflamed.
For the last couple of months, it’s become quite an issue again. My counts are running at about a 1.4 when normal is 13.0 (that’s white blood cells).
I’m on heavy doses of steroids trying to pump them up some while I wait for another round of Infusion Drugs to be administered on the 9th. We’ll see how well that works.
One thing I have learned is that it could always be worse. I’m very lucky to have found great Dr’s who not only saved my life but have kept me functioning relatively well these last 4 years.
I can’t run a marathon or mop a floor, I can’t lift heavy objects or open jars. But what I do have is an amazing life with a wonderful family who loves me no matter what and
I do have the determination to fight through it as best I can and rest when I can’t. I have found that it is all in the way that you look at your life.
If you only see a world full of “I can’t” then you’ll always be stuck right where you are at, but if you see a world full of “I can try’s” then you will move forward even if it’s just a little at a time.
It took me quite a while to figure all of this out, but I am so glad I did.