Waiting, still not sure

I've had progressive pain since the birth of my son 2 years ago, waiting for a rheumatologist appointment, 2 months away. I hurt all day, in every joint, stiff achey, low grade fever. I don't have tender to the touch joints, and I am able to move them freely, they just hurt no matter what I do. And laying around makes it worse. Does this sound like I have ra to anyone? My rh factor was 28, but I don't understand what that really means. I am tired of not knowing, and hurting. What does it feel like in the beginning stages of ra?

Hi Marrie,

It can really vary from person to person but when I began to have pain and symptoms from RA it was initially in my tendons and connective tissues. So for instance my achilles tendon hurt badly, to the point I couldn't place any weight on my foot what so ever. Also my wrists, shoulders, feet and fingers all would become swollen and hot. I ran a pretty consistent low grade fever much of the time.

For me activity made things unbearable pain wise. The only thing at that time that gave me any relief was being totally sedate and using ice on the area that was inflamed to numb it into submission.

At the time I was in heavy construction. I would wake up super stiff, sore and swollen but manage to get to work, near about first break time I was DONE. As an example I set alot of rigging for lifting various things and it would exacerbate my already sore shoulders and wrists to the point that I would struggle to lift the hook about an hour into my day. My boss was a great guy and knew there was something genuinely wrong and would have to send me home. It was pretty hard for me to digest that at the age of 26 and in really good physical shape. I could barely drive home afterward the pain was so great that having to move at all was agonizing.

As time went on I began to have massive flare ups. The first bad one was my hips and I had to scoot across the floor on my behind to get to the bathroom for several days. Next came my middle fingers swelling so badly that I could not bend them at all. For me when I had pain or swelling on one side it would affect the joint on the opposite side as well. My regular doctor was completely baffled by this and kept sending me to physical therapy. This actually turned out to be a good thing because while I was there they would measure my inflammation using beakers and jugs of water. This gave them accurate measurements to report back to my physician regarding the flares. It wasn't until I had a real bad flare up of my knee (think grape fruit sized swelling on the back of your knee) that they were able to draw fluid and found the positive RA factor.

I was 3 years into this journey at that point.

So my experience getting to the point of actually being diagnosed with RA was pretty long. I hope that you do not have RA but if you do it does not take as long as mine did. During that time my entire life was turned upside down by it and I had a very hard time handling it physically, mentally, and as well spiritually.

I want to tell you to try not to worry or obsess but I know how frustrating and hopeless feeling it can be to not know what is wrong with you and have to wait such a long time to see someone. I really hope you can get in to see the Rheumatologist sooner than 2 months out. You may want to ask about being able to get in to see them on a cancellation of another patient. This has worked for me quite a few times over the years and has been a Godsend when I have had bad flare ups and not had pain medication available to help. You do have to be ready to go at a moments notice though.

I know that it is unsettling and worst of all it is hard to believe that others understand what you are going through. One of the hardest things for me to digest at least initially was that I LOOKED fine to others at least some of the time yet I would be feeling horrible. Totally fatigued, mentally in a fog and worst of all depressed. I was suicidal at times and I think that this was because I felt so hopeless.

Please, if you can look into taking a class on dealing with chronic pain. I was stiff necked about taking advantage of simple things like that and what I have found over the years is that if I would have done some of these simple things it very well may have helped me to manage my pain better. Also, I would urge you to consider things like meditation and prayer if you are so inclined. For me, prayer and meditation has all but alleviated the hopeless, helpless feelings that I was overwhelmed with in the beginning. I'm not saying that I don't have them but they are much easier these days to get through and in the end its all about making it through the day and seeing what we can feel good about. Sometimes its the smallest of things that can really make a difference.

Sorry for the novel but RA is a complex disease. There is alot more than simply the physical symptoms to take into consideration in terms of treating and living with it day to day. I hope and pray that you find the answers you are looking for and have a pain free day!