My Journey with Psoriatic arthritis
The Early Years
Looking back on my childhood, I am confident I had psoriatic disease since I was a small child. There was not that much known about PsA back in the 70’s, so getting a diagnosis at that age was was impossible. I remember odd pains throughout childhood and adolescence resulting in many trips to the doctor’s office that were said to be growing pains. Little did I know, this was beginning of my long journey to diagnosis of psoriatic arthritis.
Red scaly patches of skin which came and went and thought to be eczema or pityriasis. Around the age of 8 or 9, I experienced excruciating pain where the rib meets the breastbone. I now know this was costochondritis.
Costochondritis is inflammation of the cartilage that connects the rib to the breastbone. This pain and the red scaly patches would come and go throughout my childhood and teens.
Later in life, I learned that my father also had psoriatic disease that was never diagnosed. The many years without treatment, to control his inflammation, took a toll on his cardiovascular system. We lost him at age 69 due to a massive heart attack.
My Teens and 20's
My teens and 20’s were filled with many activities including graduation, starting my career as well as getting married and having babies! Along with all of this busy life, my symptoms continued to mount. By this point, I was experiencing severe IBS issues, neck and cervical pain and swelling.
At eighteen, I was diagnosed with GERD and bleeding stomach ulcers. The cause was never found. In addition, the neck and cervical spine issues I was experiencing was attributed to an injury at age 28. While carrying my two year old daughter, I fell down a flight of stairs. Who knows, this may be the cause of the spiraling number of symptoms resulting in my PsA diagnosis in later years.
What I do remember is spending countless hours in and out of gastroenterology and chiropractic offices trying to get to the bottom of my many health issues. This time period was the beginning of my chronic fatigue syndrome.
As I moved in to my 30’s, psoriasis decided to rear its ugly head! Being a new single mom, working a full-time job traveling and taking care of household chores put me under a lot of stress. I developed plaque psoriasis on the back of my head just above my hairline as well as my elbows. I avoided wearing dark colors because I was so embarrassed of the constant flaking.
And, it hurt! Under the care of my dermatologist, using every kind of medicated cream you can imagine along with injections the psoriasis persisted. It stayed with me until I was 40. One day, out of the blue, for no apparent reason, it just went into remission.
BOOM! The joint pain was on!
During this period, I was suffering with severe chronic fatigue. No matter how much sleep or rest I got, I never felt rested. The need for a nap plagued my mind every single day. Most days, I wondered how I would make it through the day.
The Joint pain and stiffness began
In addition, I was beginning to experience arm pain and numbness on my right side. My forearm hurt so bad I had to wear a brace for what they thought was carpel tunnel. My middle and ring fingers had become trigger fingers and I was seeing an orthopedic doctor quite often. They just couldn’t put two and two together.
My 40’s came with new lease on life! A brand new marriage to the love of my life, John, and I became a Maw Maw to two beautiful grandsons. Don’t get me wrong, this was the happiest time of my life. But, the symptoms continued to mount.
A multitude of joint issues including continued my suffering including my lower back and hips. However, my regular blood work was coming back fine. No one thought to check further.
To help myself, I decided to start exercising regularly. On the very first workout and about three jumps into P-90X, I tore the meniscus in my left knee, which resulted in surgery. Fast forward one year, and I tore the meniscus in the right knee with just a slight turn to walk one day. In addition, I also tore the MCL (medial collateral ligament). This time it did not go so well. The doctor explained that I not only had these injuries but I also have stage 3 cartilage damage, osteoarthritis and bone fragments floating within the knee. He cleaned it up during surgery and explained I would eventually need a knee replacement.
But, I would have to wait until I was 60!
I’m thinking at this point quality of life was much more important!
Was there hope....not so much
The hope was that it would heal like the left knee. But, I was not so lucky. The first few months were routine healing. By the fourth month, the pain and swelling became unbearable. I went back for numerous visits getting cortisone shots every few months that finally stopped working. His next suggestion was to try a Synvisc injection. Synvisc is a thick gel that they inject into the knee cavity to help cushion the joint. Desperate at this point, I agreed to the procedure.
IT WAS A HUGE MISTAKE!
My body rejected it and they kept telling me that it should get better. It was exhausting, frustrating and a feeling of hopelessness. I hobbled around on this knee for another year until all HELL BROKE LOOSE.
My 50's and finally a diagnosis
In January 2017, one week after my 50th birthday, I was driving back from the beach and felt unwell. It literally felt like the flu! My body was aching, every joint in my body hurt, my vision was blurry and I could not think clearly. I thought I picked up a bug while on vacation. The fatigue was unlike anything I had ever experienced, and I was barely able to get out of the bed for about a week. When I would rise to stand my body was beyond stiff, I could hardly walk. My feet and hands felt like they were being crushed and the pain in my lower back and hips was excruciating. My middle and ring fingers on my right hand and the last three toes on my right foot were so swollen that they looked like fat little sausages.
Needless to say, I was terrified!
And then came the wait
I scheduled an appointment with my family doctor so they could run some tests. Upon examination, she thought I had some sort of rheumatic or immune issue. She ran a specific set of blood tests to start ruling things out. After a few days, the tests came back and I was negative for rheumatoid arthritis, gout and a host of other diseases. However, the inflammation levels in my blood were extremely elevated and she suggested a referral to a rheumatologist. It took me three months to get an appointment. In the interim, she put me on a prednisone pack to help with the inflammation and pain.
During this three month wait, I was in absolute misery and struggled to get through my daily routine. Showering, putting on makeup and even attempting to hold a hair dryer exhausted me to the point that I had to make changes with how I went about things just to make myself presentable for the day. My normal wake up and makeup routine that typically took an hour had now turned in to three.
Finally, I was able to see the rheumatologist, and it did not go well. By this time, most of the inflammation had subsided although I was still experiencing pain and fatigue. Without active psoriasis or visible inflamed joints, she would not diagnose me even with my history of having psoriasis. She told me she would put me on Methotrexate for three months and I could prove her wrong. She never asked me one question about my health history. As an FYI, you CANNOT take Methotrexate when you have a history of fatty liver disease! It was the worst doctor visit I had ever experienced, and I left in tears feeling yet again fearful and hopeless.
Taking control of my health
At this point, it was time to take my health in to my own hands. I began changing my diet and taking supplements to keep the inflammation at bay. It helped some but after much research and knowing in my heart and mind that I had psoriatic arthritis, I knew I had to seek real medical attention. Although diet, supplements and exercise do help with the symptoms, there is no cure for psoriatic arthritis. It is critical to be under the care of a doctor who can properly diagnose you and treat you with the proper drugs to keep the disease from progressing.
I basically had what I call Flintstone feet!
Frustrated and scared, I scheduled a new appointment with my orthopedic office to see if they could help with a brace. One look at my feet and ankles and I was advised to see a rheumatologist, yet again.
I shared my story with the PA, she made a few calls and booked an appointment a month out. This time I went to my appointment well prepared and still concerned I would not get help. Prior to my appointment, I documented and faxed the doctor my medical history since birth, a symptom list with a timeline, family history, all related medical records and x-rays. Thirty minutes into the appointment, I was given a formal diagnosis of psoriatic arthritis, fibromyalgia and chronic fatigue syndrome.
This was not the end of my journey with psoriatic arthritis but the beginning of my new journey to find the right treatment.
Please feel free to share your journey in the comment section below. Sharing our own individual journey can help others understand what to expect.