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Okay when it time to give up?
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micbrewski posted:
Hi everyone,
I post on here from time to time, hardly ever get any responds. So I will try this once again. My Rhumey thinks I have Fibro. But I know RA is in my Family. I have morning stiffness, joint pain and some swelling, I hurt all over. Hips,hand knees, back, neck stiffness. She ran blood work, all came back normal. I have seen 3 different Rhumey over the last two years. The first Dr thought I was crazy,she didn't seem to care or listen to me. The second Dr said I have RA. And now my current Dr says I should have some kind of inflammation that show up in my blood work. I still believe there is more going on. Are there any other test I can request? Do I stop and give up on find out what else is going on? Anyone have any suggestions? Is she right about inflammation showing up? I just don't understand why I feel this way and all comes back normal. My fingers were swollen when I went to see her and she put me on Cymbalta to help with the swelling. It's swollen finger inflammation? Sorry I am just at a loss. She also told me that my swollen Thumb were not apart of RA, that would be osteoarthritis. Well if she said that isn't there inflammation with that? I guess my question is do I let the possibility of not being treated correctly just because of the normal blood work? Any suggestion work greatly be appreciated.
Soft hugs to all, Roxann
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xperky responded:
Hi Roxann, I understand very well how confusing this all is. Sometimes it takes a few years to let our bodies tell us in more clear ways what we are suffering from.

My story is kind of like yours. I was diagnosed with FM a couple years ago. The symptoms all matched up and treatment was moving along OK. My rheumatic blood tests were negative. Over the next year I started getting swollen toes, like red sausages, and lots of foot joint pain in the same places on both feet. Still negative blood tests, but an orthopaedic dr said I could have early RA and started NSAID treatment with success.

Then the NSAID stopped helping much and the sausage toes came back, along with hand joint pain, redness and swelling, the same on both hands and both feet. These specific joints on me are the typical RA joints. (I also have some OA in typical OA joints.)

I have yet to test positive for RA, but some were high-normal and my anti-ccp was elevated from last time. So I am like you in not showing inflammation in my blood but definitely on my body...Doc says it's RA and will start MTX.

I'd say the way I feel lately is much worse than a couple years ago. My fatigue is huge and I hardly do anything without paying dearly in fatigue and pain the next day or more. My knuckles are large and boney looking, my pinkies are sticking out and up too. Really weird. It hurts to do normal things in the kitchen or bathroom. Knees are beginning to be trouble daily too.

So, to summarize, if your body is like mine, you will start to know for sure. However, as you know, some people have very little symptoms and yet have RA damage happening! OA can be very painful too, of course. I did a lot of reading about OA and RA online. I found out which joints are usually affected by each, and how both sides of the body are usually affected by RA.

My understanding is that about 20 percent of RA patients don't show positive blood tests. Online you will find lists of criteria that doctors use to diagnose RA. A patient must have a certain number of these findings to receive the diagnosis. These include visible/palpable joint changes, image tests like xrays or mri's, stiffness for more than 30 mins in the morning, joint fluid tests, etc. as well as blood test results. (You might also show your doc phone pics of your worst days of swelling.)

I sympathize with your worries about not getting treatment before damage is done. Then again, I wouldn't want to get treated for something I didn't have! I hope the Cymbalta improves your symptoms soon. Be patient with the whole process, and keep being pleasant with your doctor if you can...LOL! I hope some others chime in with their thoughts too.
 
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micbrewski replied to xperky's response:
Thank You. I guess I really don't have a choice but to hang in there. Take it one day at a time.
 
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An_247970 responded:
Hey,I was like you when I first became Ill. All I knew My left hand was four times the size it should and it thrones like crazy. I went through every kind of test they could think of and still did not come up with a whole lot. My dr. Sent me a second opinion and that is were I got some answers. That dr.said she went into rheumatology because each case is such a mystery. She validated how I felt and listened to each symptom and did not make me feel crazy .She started me on treatment right away and I was told that I had a very aggressive kind of RA.,fybro,and chrons. My RA test did not show positive for 2 years but the bone scan and mris were positive. It is very important to have a good dr. I recently moved out of state and I am seeing my new one next week. I wish you luck . And yes your thumb is part of your RA. If you don't have a good relationship with her then maybe it is time to change.


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