My Life with Palindromic Rheumatism: August 2009

The sorted tale of my diagnosis is not half as long as some peoples, but it was an agonizing journey. It took 6 months from the time that I actively started searching for an answer, that I finally found a doctor that could help me. I was called crazy so many times that I began to wonder if perhaps I was losing my mind, and that's one of the worst things that can happen to someone searching for a diagnosis.

It all started one afternoon as I was standing up from my desk at work. I hadn't moved around much for a few hours, and so I expected to be stiff when I stood up. What I didn't expect was the pain. My right knee hurt with a dull pain, but the weirdest part was that it felt full. Almost like I had a small grapefruit under my knee cap. I started hobbling immediately, holding on to my husband who had come to pick me up that day. Right from the beginning I was concerned, considering that sudden pain is generally not a good sign. But it was during the next day, when I stopped being able to walk at all, that I really started to get scared.

I started looking up places to rent a wheelchair near by, and my husband and I went to pick it up. As I sat down into the wheelchair I felt relief and agony. I felt relief from the sharpness of the pain, but the last time I had been in a wheelchair was about 5 years previously for a near fatal car accident that left in a wheelchair for nearly half a year. I was not a fan on wheelchairs and I probably never will be. I hate feeling pitied by people, and the absolute worst is when people won't look a disabled person in the eye. I grew to hate the confinement previously, and I was not thrilled about being back in a wheelchair again. But why was I in this wheelchair?

I started researching on the Internet, which is a past time of mine with some many health issues. I had spent 6 months researching another mysterious ailment about 2 years earlier, so I was well versed in the pros and cons. There's so much information on the web that can suck you in. You go searching for answers, but often times you are left with nothing more than a list of questions or worries longer than when you started. It's agonizing, but allows you to feel as though you are doing something to help yourself. I spent weeks in a wheelchair suffering from sharp pain, internal joint swelling (couldn't see a whole lot on the outside), and periodic red splotches that were hot to the touch, on my knees. I knew enough to know that the redness and heat over my joint signaled "inflammation", but I didn't know why.

In my searching I discovered several diagnoses that explained my symptoms, all of which were part of the autoimmune inflammatory arthritis family. I looked at pictures of deformed hands and horrifying x-rays, and became terrified that I was going to lose the use of my hands and become crippled at 25. As soon as I could get in to see my doctor, I did. My mother came with me as moral and physical support. My doctor referred me to a rheumatologist, who could not see me for months. I got a complete list of rheumatologists from my doctor and started calling everyone on the list. No one could see me, I would have to wait for a month at the very least.

I made an appointment with the first doctor that would see me (1 month wait). In the mean time I did more research, and prepared myself for my big appointment. Because the redness was an obvious symptom, but seemed to come and go, I took high resolution pictures which I burned on to a disk. My plan was to describe my symptoms and give the doctor the photos just in case my knees were not red at the time of my appointment. 1 month passed.

Both my mother and my husband came to the doctors appointment with me 1 month later. I had the disk and a clear cut list of my symptoms. I was still in the wheelchair, unable to walk without help and a great deal of pain. I explained everything to the doctor she examined my hands, my knees, listened to my symptoms, and then left to look at the pictures on the disk. When she came back she told me that the pictures were not clear enough to see anything and that I wasn't really showing signs of anything, but that she wanted to run some blood work. When I cam back a week or two later for the results of the blood work, she told me that my blood work was completely normal and that there was nothing wrong with me.

Sitting in a wheelchair, unable to walk, I was stunned at her pronouncement. I asked her if nothing was wrong then why was I in a wheelchair. "Perhaps it's psychological" she said. I felt numb. We left. I tried to make a follow up appointment immediately with my regular doctor, but he was out of town for several weeks, so I settled for another doctor in the office. I just needed to see someone, and have them tell me that I wasn't crazy and obviously there was something psychically wrong with me. A week later I had my appointment.

My mother came with me to this appointment as well, since we were both very upset with the way the last one went and needed to now face this together. I talked with the doctor about my previous appointment and my symptoms. He briefly looked at my knees and the blood test results from the other doctor, and said that he had something that would help me. He started talking about a new drug that helped with joint pain, a drug that sounded so familiar in name but that I couldn't immediately place. Then it came rushing back to me as I remembered the commercials on TV. The drug he was prescribing me was, Cymbalta, a depression medication.

I lost my cool, and the sound of my voice raised ever so slightly. "Why are you prescribing me a depression medication?" I asked getting angrier and angrier. Tears started to well up in the corners of my eyes. I couldn't believe it, no one believed me. I was in a wheelchair unable to walk because of a sudden crippling pain, and no one believed me. My mother reassured him that I was not depressed, as did I. He wanted me to just try it, because studies had shown that it helped with joint pain. "Joint pain due to depression" I told him. We left, and I felt completely defeated.

I stared at the prescription for a long time, but could not force myself to take even one pill. I knew that I wasn't depressed. I knew what depression felt like and this was not it. I was absolutely certain that I was not depressed.My mother-in-law who has dealt with multiple autoimmune diseases (one of which is rheumatoid arthritis)referred me to the doctor that had diagnosed her years earlier. He was an extremely experienced doctor who had a waiting list of 4 months. But considering the difficulties I had gone through so far, I was willing to wait for the best. I made a resolution that if this doctor thought I was nuts then I would start taking the Cymbalta, and make an appointment to see a psychiatrist.

I eagerly awaited my appointment, and when the day of my appointment finally came I was escorted my parents, to make sure that I had all the support I needed. I took another copy of the pictures, and the blood work test results. I was so nervous that when I met the doctor I stumbled over my words. I explained what had happened leading up to that day, and all of my symptoms. He asked me more questions then either of the other doctors and carefully inspected my knees. They took x-rays of all of my joints, and I awaited the doctor to return to my exam room after. When he returned he was carrying a giant text book, and said that I had Palindromic Rheumatism. He had looked at the pictures and said that he could see redness in the pictures, and upon exam of my knees there was obvious swelling around my knee caps. He stated that I was a text book case, with all of the symptoms and none of the joint damage or positive blood work.

He described the difficulties surrounding palindromic rheumatism, and the current understanding that it is an atypical presentation of rheumatoid arthritis, and in some cases the condition progresses to the more traditional variation with increasing joint destruction, and in some cases it cycles with no underlying joint destruction. He said that typically they recommend aggressive early intervention with drugs so as to prevent it from ever progressing further. He wrote me prescription and sent me on my way.

I am sure that there are many out there that have experienced the same difficulties. And it is so scary to question your sanity simply because your in pain and no one will believe you. I spent 6 months thinking about nothing else. I couldn't concentrate, and I was glued to my computer searching for answers. The only answers I could find were because of people just like me sharing their stories through blogs or forums. And that is why I am here...sharing with you.

Do you have a similar story? Please feel free to comment and talk about your own personal difficulties in getting diagnosed. None of us are alone.

My Life with Palindromic Rheumatism

Thursday, August 27, 2009

My Diagnosis

Wednesday, August 26, 2009

Welcome!

Subscribe via email

About Me

Blog Archive

Followers