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Rheumatoid Arthritis is a complicated disease. I am not speaking of symptoms, medications, and lifestyle changes. I mean mechanically speaking – on a molecular level. It is complex and multi-level in its schemes.
That is one reason that experiences vary so greatly between RA patients: Which joints are affected? How many joints? How quickly does it spread through the body? Which other body systems are affected? How much destruction is there in the joints? Are additional autoimmune diseases involved? How does the Rheumatoid Arthritis initially present (what I call the “onset story”)?
What is typical Rheumatoid Arthritis?
Last year, my rheumatologist began to say that my Rheumatoid Arthritis was beginning to look atypical. I did not understand that since the only RA that I knew was my own. Around that time, I began to dig in to investigate what is the typical Rheumatoid Arthritis experience.
I wanted to do the research for myself. WHAT is typical? I read everything I could find.
I have read several books and what is called “typical” differs from author to author. But, I also began to scrutinize narratives of RA’ers all over the internet. And I also have connected with many one on one. What I have seen and heard from hundreds of RA’ers has not fit nicely into the neat categories or descriptions of any author.
Questions need answers
Every little thing that I learn raises more questions. If you have been reading this blog, you have heard me raise some of them. Can Rheumatoid Arthritis be understood or cured without answering any of them? I do not believe so.
To read a few of the questions that I have already raised, see The Four Courses of Rheumatoid Arthritis, part 1 , Is This the Best Time to Have Rheumatoid Arthritis, part 3 , and What Makes Diagnosing Rheumatoid Arthritis So Difficult?
The only thing that I am certain of is this:
If there is any discrepancy between the experiences of people with Rheumatoid Arthritis and those who academically describe and define this disease, it is the descriptions that are wrong – not the RA’ers.
It is not that they got their symptoms in the wrong order. Shame on them for not doing their RA right.
It is not that they have fallen short by missing a symptom on the list. How could they be so negligent?
It is NOT that the patients have failed the blood tests. The blood tests have failed the patients. The tests have failed to sufficiently demonstrate the presence of the disease. That is not the patients’ fault.
Why is it so typical to have atypical Rheumatoid Arthritis?
This week, I have driven across three states hoping to find one small part of the answer.
7 comments:
Love this line "Shame on them for not doing their RA right."
I will be interested in your adventures with the new dr, how you found them, etc
How long will you be gone?
This is another frustrating thing about RA. My doctor often scratches his head about me. I am not a typical RA sufferer. He is sure that I have it because of the overall signs. But I wish it were a little more simplier.
My theory is that not everyone's RA is the same because there are other factors that play in to our lives such as exercise, what type, what type of meds and what point in our development of RA, work, stress, accidents, previous injuries, ability or lack of to take meds, get diagnosed early, ability to rest when needed. I think even some factors such as family support helps a lot. I do notice a huge difference in pain based on stress and anxiety, abilty to rest or not rest and now that I am horseback riding again which I hadnt in years and was SO painful to start doing again now makes me feel amazing though I still have the usual symptoms that I always do I feel a bit stronger and more confident because of it and less stressed. Sorry for the rambling I am not very good at being cohesive and straight to the point esp since it has been storming all day which means extra meds. Take care and be safe on your journey.
Kelly, thank you for all of your time and effort put into this. I enjoy and have learned a lot since finding your blog.
I often wonder how I would be doing today if my RA would have been properly diagnosed earlier. My best guess is it was approximately 3 1/2 years after I began hurting and was finally diagnosed.
Terry
Terry: I completely agree. I was originally diagnosed with reactive arthritis when I was a child approx the age of 8 though suffered since I was three yrs old. I was not finally properly diagnosed with Ankylosing Spondylitis until Spring 2003. Keep in mind I was born in 1983. That was a long time of symptoms prior to diagnosis. I think that you and I and so many others would have had our RA under control more quickly we would have less damage however with the recent meds that have come out, we would probably would have experienced less pain but still had damage. Who knows, its just a part of our story and we are lucky to have a diagnosis and live in an age of so many scientific discoveries esp in meds! Best of luck to your in your journey I hope it is pain free.
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GREAT BLOG ! VERY INFORMITIVE !I loved it.
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