I need answers to my hand/foot pain!!!!!

Question

I was diagnosed with Lupus when I was 19. (ten years ago). I was diagnosed with Hypothyroid in 2006. My lupus was controlled right away and so was my thyroid. I felt great after being on medications for both. About a year ago though, I started getting horrible hand and foot pain and swelling. I cant walk at times because of the pain and even button my shirt or brush my daughters hair! Ive been to sooo many doctors and no one will give me answers because my bloodwork comes back normal. I need answers and help! im a 29 yr old mom who wants to live her life and enjoy her children. not be bed riden and in pain 24/7! what could possibly causing the pain and swelling in my feet and hands and I often get itchy and fatiqued as well. Im on Methotrexate injections, Plaquenol, prenisone, aleeve, and levothroxine. Nothing is helping this horrible like arthritis pain. and doctors say they see the swelling in my joints but seem to blow me off after they see my blood work is normal! I feel alone and need answers!

carolanivey · Answer

RA is diagnosed with  a variety of tests - blood work, xrays, and a qualified rheumatologist listening to your symptoms and laying hands and eyes on your joints. RA can be present even if your blood tests are negative, so if your doctor only looks at blood tests and blows you off, FIND ANOTHER DOCTOR.

Gabbync11 · Answer

I have similar issues and NO ANSWERS!! I'm not sure RA is diagnosed via blood tests. I have swollen hands, fingers and my shoulder burns at times. Some days I have to shake my fingers to check for numbness-I get scared. I'm 36 and feel 66. Fibro? Not sure I'm a believer in chronic pain for just no reason. They threw Cymbalta at me and Meloxicam... for what? I'm not depressed, so that's not helping now. This morning I woke up at 4am with my pointer finger swollen. Don't know either... Maybe we can research vitamins or other alternatives for joint pain? I'm so sorry you are in pain. My heart goes out to you too. :-( -Gabrielle

mollyadelaide · Answer

I'm not an expert by any means. But a cyst on your finger joints (a rheumatoid nodule) seems to be possibly indicative of Rheumatoid Arthritis. Or at least suspicious of it.  Have you been on a steady amount of prednisone for awhile? It's not fair, but I think doctors sometimes don't take you serious unless you really demand it so to speak. Have you thought about a second opinion? What I meant before is that a flair is not necessarily reflected in your bloodwork. 
I have a confusing diagnosis and still waiting to hopefully get answers. Originally dx with RA 16 years ago. Anyways that is to say my experience is that my joints inevitably always flair every season change to some degree. (Or weather change on a smaller level.) Rheumys have always nodded or even said that is typical. 
I hope you get relief!

bigsissie · Answer

I was just diagnosed in Feburary with hashimoto's so I do not know alot about all of this but you may want to post in the thyroid forum to get the best advice. Everyone there is very helpful. 

Best wishes, Sissie

kryslanae · Answer

well I went to my Rheumatologist in early May and he put me on the methatrexate injections. before I was just taking plaquenol and prenisone. But I haven't seen a difference at all. Its sooo strange to me that for ten years now, Ive had lupus and never did I have these symptoms, and all of a sudden I have sooo much joint pain only in my fingers and toes and the balls of my feet. I even have a cyst growing on one of my finger joints. I wish I knew what was making me flare and makes me wander if it really is even my lupus or if its another unknown illness going on in my body. my ana looked fine, my white blood cells looked fine (which is always low) and my thyroid looked fine. kidneys fine, everything looked great! He even tested me for inflamation and that was normal and he could even see that my toes and fingers were very swollen!!! I just dont' get it. I need some relief and be able to be active again and be able to live a normal life. its been a year of hurt and the worst pain of my life.

mollyadelaide · Answer

I have heard that the goal of treatment is to get your disease under control therefore the labwork should reflect that and be "normal" if the treatment is effective. I don't think bloodwork always gives an accurate picture of what your body is currently experiencing. About 6 years ago I was having tons of scary lupus-like symptoms but they didn't diagnose me b/c my labwork was normal. Now I'm not having nearly as much trouble but my labwork shows an ana of 1:1280, etc. I have heard others say a good rheumatologist will treat your symptoms not just your labwork! Maybe they need to switch some of your meds around b/c it is possible for your body to build up a tolerance to some medications.