Kelly at RaWarrior put this topic up for a blog carnival. I really wanted to participate in the Carnival but this topic left me scratching my head. How do you diagnosis something that is poorly understood, variable, and unpredicatble?
I woke up one morning disabled. The doctors kept asking me if I hadn’t had symptoms before and I kept telling them NO. Now it is 20months later and I have learned a lot. My answer now would be YES. Over at least 5 years I had what I called my “wandering pain”. Pretty much something hurt everyday, but not the same thing more than 1-2 days in a row. I wrote them off as getting older, slept wrong, pulled something, etc. A few times I did see my PCP for more severe pain, or longer lasting. She always ran lots of tests but we always had more questions then answers. I now know she was looking for RA then but I didn’t know. ESR and CRP was always elevated, sometimes a little, and sometimes a lot. I didn’t show RF and my pains were NEVER symmetrical. Eventually, no matter how bad the pain was I wouldn’t go to the doctor. As a nurse the worst thing I could imagine was being labeled a drug seeker/attention seeker. At one point I worked for 6 weeks with a broken hip because to me it was just another wandering pain.
In listening to other peoples stories, I know that I am not alone. Frequently “the wandering pain” visits those of us that end up diagnosed with Autoimmune Arthritis. Often times symmetrical is not how it starts yet that is a defining characterisitic of rheumatoid arthritis. Blood tests aren’t conclusive, x-rays don’t show til late, MRI’s are too expensive and limited by most insurance companies and PAIN is a four letter word.
Link to the blog carnival: http://rawarrior.com/rheumatology-blog-carnival-2-how-can-diagnosis-be-improved/
Yeah, I am going through the early stages now. I had extremely elevated sediment... rate. (inflamation) For the first 3 or 4 visits. Now, my last visit, everything is normal. Only slight elevation in inflamation .
ReplyDeleteSo now I am left wondering, Do I have RA or not? This is very frustrating. I have pain in my hands, but not at the same time. Same with my feet. Only one knee really bothers me and I had a bought with my one wrist that lasted almost a year. But I swear my Rheumy doc didn't believe me cause he couldn't see the swelling, yet it was so clearly there to me. Also, now I have a X-ray that shows the swelling. He wants to see that. Only with me will he see it, this way I know he looked at it. It's to bad you have to be sick in order to have a dx.
Great post! Keep speaking up about it and we can get there!
ReplyDeleteTanya, Thanks for sharing this. I have never really thought of it, however, looking back now I would have to say yes! Yes, I did have odd pains that kept me going to the Doctor. The age of 30 came many health changes....first allergies to so many things. Yet, at times, I blame my accident when I was six years old. I was hit by a car, had a fractured skull and badly banged up legs. One caan never tell which trauma could have brought it all on....or, is it genetically predisposed?
ReplyDeleteAfter my sudden allergies appeared, I had a bad reaction to prednisone which left my right leg with Avascular necrosis, both the Femur and Tibia. I wore and large funky leg brace for more than a year which took the pressure off the bones allowing them a chance to heal on their own. If they did not, then bone marrow transplant would need to be done. Luckily for me, the leg brace did the trick!
Funny, once the allergies improved.....RA hit fast, hard and suddenly! It took a year to get diagnosised. So mmany events could be regarded as my RA trigger. One thing is for certain, We need more research.
Cindy Souza
It's very difficult to know if you are going through the early stages of anything until you are diagnosed. Catch 22 of the worst kind. Fine blog. Best wishes.
ReplyDeleteMark
Tanya,
ReplyDeleteThanks for participating in the carnival. You brought up some good points. In response to the comments as well, it seems that part of improving diagnosis will be sorting out signs, but another part is listening (believing) the patient.
Rheumatoid arthritis is a systemic disorder in which immune cells attack and inflame the membrane around joints. It also can affect the heart, lungs, and eyes.
ReplyDelete