The Young and the RA

One thing I found really interesting when talking to others with RA was how some people are diagnosed almost right away while others are diagnosed quite a while down the road. I ended up asking my rheumatologist about this, and he gave me a few different possibilities: 

One, not all doctors know a lot about RA. Not even all rheumatologists specialize in RA. So if you have a doctor or rheumatologist that isn’t familiar with RA, they may first be looking at a diagnosis they are more familiar with before realizing you have RA.

Two, some people with RA don’t show the classic symptoms of RA. Those classic symptoms include:

• “Stiffness: The joint does not move as well as it once did. Its range of motion (the extent to which the appendage of the joint, such as the arm, leg, or finger, can move in different directions) may be reduced. Typically, stiffness is most noticeable in the morning and improves later in the day.
• Inflammation: Redness, tenderness, and warmth are the hallmarks of inflammation.
• Swelling: The area around the affected joint is swollen and puffy.
• Nodules: These are hard bumps that appear on or near the joint. They often are found near the elbows. They are most noticeable on the part of the joint that juts out when the joint is flexed.
• Pain: Pain in rheumatoid arthritis has several sources. Pain can come from inflammation or swelling of the joint and surrounding tissues or from working the joint too hard. The intensity of the pain varies by the individual.

“These symptoms may keep you from being able to carry out your normal activities. General symptoms include the following: 

• Malaise (blah feeling)
• Fever
• Fatigue
• Loss of appetite
• Weight loss
• Myalgias (muscle aches)
• Weakness or loss of energy” (eMedicineHealth).

Additionally, most people with RA (not all, however) are positive for the rheumatoid factor:

“Rheumatoid factor is present in 80% of adults who have rheumatoid arthritis but there is a much lower prevalence in juvenile rheumatoid arthritis. The incidence of rheumatoid factor increases with duration of disease in rheumatoid arthritis: at 3 months the incidence is 33%, while at one year it is 75%. Up to 20% of rheumatoid arthritis patients remain negative for rheumatoid factor (also known as “seronegative rheumatoid arthritis”) throughout the course of their disease” (About.com)

Looking for the rheumatoid factor is a common way that doctors diagnose RA, problem is that not all people with RA have it and not all that have it have RA. So while it is a good indicator, it isn’t conclusive.

Diagnosing RA isn’t an exact science at this point, which is why it can take so long for some people. So give your rheumatologist a break if s/he was late on the pick up.

Until next time,

S.P.

I know my diagnosis story, which I shared with you previously, is very unique. A lot of people are given the run around for quite a while before finally being diagnosed. I talked to one woman who what told by a rheumatologist she was a failure for not responding to any of the medications. Yeah. Not that the medications were a failure, she was. Ridiculous.

I also heard people have been referred to psychologists by doctors who think it is all in their head. Turns out, however that one is not quite so bogus:

“Psychogenic pain is a term that was used to refer to real physical pain that is caused by a psychological problem. It is now known as a pain disorder associated with psychological factors. Some types of mental or emotional problems can cause pain. They can also increase or prolong pain. Headaches, muscle pains, back pain, and stomach pains are some of the most common types of psychogenic pain” (University of Iowa).

Many people feel pain that they have internalized based on a psychological problem. The pain may be real, but there is no physical reason for the pain. If doctors can’t find a solid physical reason behind your pain, they may refer you to a psychologist to see if there are any psychological reasons behind the pain. This does not mean they think you are imagining the pain! It just means that there may be psychological reasons behind it.

Another reason that you may be referred to a psychologist is because seeing one can help a person handle psychical pain, especially when doctors can’t find a cause for it. It can be such a frustrating experience not to have any solid reason for your pain.

Even if you are diagnosed with RA, it can help to see a psychologist to help you cope with the reality of having a chronic illness. It is a scary thing. A lot of people become depressed and have trouble dealing with the realities of being diagnosed with RA. It can be even worse if the medications don’t work for you. I highly recommend talking to a therapist. I’ve seen one, and she helped me a lot. It gives you someone to talk to that can help you put everything in perspective. So look into it if you are having trouble and need an understand ear.

Until next time,

S.P. 

I thought it was about time that I told you the full story of my diagnosis. Really, it all started with a finger. The middle finger on my left hand to be exact. It was the summer before my freshman year of college. I was working at a summer camp and just enjoying the idea of the upcoming freedom I was about to experience when I first felt pain in my finger. At first I thought I had broken it, and I just kept it bandaged up in a finger splint for a while.

Then I started having problems with my feet, but I attributed that to walking around in flip flops and on hot sand all summer. (I’m from southern California and spent most of my summers at the beach.) Halfway through the summer I went to visit my future college for “Summer Welcome” (a program the school put on where it brought all the incoming freshman together to learn about the university). It was during that trip that I started experiencing pain in my left arm and shoulder.

That is when it became too much. I knew something was wrong, and talked to my doctor about what it could be. He advised taking a large dose of Advil and thought it could be a viral problem. I was leaving for my university so soon, however, that there wasn’t much more my doctor could do. Instead, my mother took action (have I mentioned how amazing she is?) and set me up with a rheumatologist at school. Unfortunately, the appointment wasn’t scheduled for quite a while.

When I first got to school, I got swept up in sorority rush, meeting new friends and getting use to being on my own. Within a few days, however, I started to feel it. I remember going to one sorority on one of the later days of recruitment and being in so much pain that I was a complete jerk to the girls I was talking to. Needless to say, I was not asked to join that house. (Luckily, I did find an amazing sorority to become a part of and met some amazing people through it.)

Looking back on it, it is a bit silly what took me to get to doctor.

One of the guys I became friends with in the dorm ended up having to go to the emergency room due to a not-very-serious problem with a toe that became swollen, so I decided to go with him. Kind of as an afterthought. Yeah, I said it was a bit silly.

So when I went there the doctor gave me some mild pain killers (not much better than my Advil) and told me to go to the university’s health center ASAP. So I did. And they drew blood, gave me some drugs for the pain and soon after I was diagnosed with RA (and my rheumatologist appointment was moved up through some pressure from the health center).

I remember getting the call saying my blood work had come back, and I had RA. Part of my kind of knew it was coming, but part of me was really scared. I remember calling my parents in a sort of shock and telling leaving a message on their answering machine. My mom kept that message on the machine for a long time (she may actually still have it; I’m not sure).

At that point, my parents thought I was going to come home from college. But as hard as it was, I knew I couldn’t leave. I couldn’t return home to just sit in my room. I knew I wasn’t going to let my life be ruled by my diagnosis. I had RA, but I also had a lot more. I had made friends at school. I had one of the most amazing roommates. (So many people have horror stories about freshman year roommates, but mine was the best roommate I could ever imagine. She was so understanding about the exhaustion that came with RA and helped make my life so much easier. I was really lucky) I had joined a great sorority. I was going to one of the most beautiful universities in the U.S. And I was in some incredible classes. I knew I had to stay.

So I did. They had me on prednisone for about nine months (read my post about prednisone to learn more about my experiences with the drug), but I eventually was able to get off it and was just on Enbrel and methotrexate for a while. I am now on methotrexate, Humira and Imuran.

I went through a lot while my doctors worked to get me on the correct drugs, but I know I am lucky I had such amazing rheumatologists, and that so many people have had such worse experiences trying to get diagnosed. But no matter how it happens, finding out you have RA is no picnic. That’s one thing I know for sure.

Until next time,

S.P.