I have a history of severe Headaches. For years I have taken triptans during these spells but I have always thought there was an underlying problem. I have fatigue that is beyond words during these spells when the headaches are the worst. About 18 months ago my joints in my hands began to swell, first on my right hand and then on my left several months later. Now both hands have knots on the knuckles and hurt, especially when they become red and inflamed. I have always complained with y neck and a couple of months ago broke my collarbone and during the visit the doc told me that I had some pretty significant Arthritis in my neck c5. I have several blood workups where they checked for autimmune issues and NOTHING came back. When I go through these spells the ONLY thing that helps is Steroid shots. Lately I have had confusion, big time pain in my ankles and feet and I have developed several cysts on the tendon that controls my big toe in my left foot. Every doctor wants to look at these problems individually and nobody has given me a diagnosis. Can you have RA and your bloodwork come back normal? My mother had RA and died at an early age. I am beginning to become desperate for some answers. A life filled with pain and even worse pain that is dismissed by doctors and loved ones is hard to live with. Can somone help me to make some informed decisions that might lead to a diagnosis. This is a inflammatory process of some kind going on in my body. Just to have an answer, no matter what it is would be a jooyous event in my life, atleast then I would know what it is that I am fighting.
Q: Need Some Advice...Cannot get a diagnosis.
Wow, your story sounds familiar even down to the first symptoms, the headaches. My headaches were so severe that I didn't even notice that my fingers were beginning to swell up like sausages. What I would recommend is to not give up, or let any doctor tell you that nothing is wrong. The fact is that nobody knows their body better than themselves so if you feel something is wrong, many times there is. Like I said earlier your symptoms are so familiar and definitely sound like it could be rheumatoid arthritis. I would recommend that you find a rheumatologist to run tests again, and again if need be. With your symptoms and your family history I'm a little suprised that they aren't testing you every couple of months. Many people get diagnosed before their blood tests prove they have RA, and even if their blood tests don't prove they have RA based on symptoms and family history. A good place to start your search for a rheumatologist would be the arthritis foundation who can help you find one in your area. I do beg of you to continue your search for a diagnosis. It took me two years, years that caused me so much damage, to finally get someone to listen to me, test me, and diagnose me. Please don't give up because the sooner you get a diagnosis, the sooner you get treatment. I know it can be scary and frustrating, and you may even start to question if all this is just in your head. But you know your body best, so don't give up! So many of us have had to fight hard to get someone to listen to us and diagnose us, so please know you are not alone and we are all here with you. Please keep us updated on how your fight is going and feel free to ask any question you may have, this is a pretty awesome group of people. And remember, we are all just a click away! Good luck and best wishes!
Holly
I presume you have seen a rheumathologist. Did you have an MRI scan on your hands or feet ? It may not show up in the blood if it is inactive at the time. I had blood tests for RA and it proved inconclusive. It was only when i had an MRI scan that i got a proper diagnosis. If you fingers are red and knuckled that is a sure sign you have Ra i would say. I also had terrible pains in my hands, it was unbearable, and i ended up having to go to a psychiatric ward the pain was so bad. About three months later , the pain is only slight and bearable after taking the meds. I'm not sure about the headaches, but my guess is fibrimiaga. Do'nt take my word on it. You should arrange to get an MRI scan on your hands and feet and take it from there.
Wow! That sounds like me 2 years ago! My pain started in my left wrist, the joint had become so swollen that I couldn't move it and thought it was broken! I went to the dr and they said that I had a "traumatic wrist sprain," which was hilarious because I hadn't fallen or hurt it in any way. I did have a low grade fever and a rapid strep was taken.
Long story short, my pain continued for almost 2 years. At first is was migratory, going from joint to joint, then it was symmetrical. Like you, my PCP said that is was basically all in my head or caused from stress. All of my blood tests came back normal. This July, I changed insurance plans and had to find a new PCP. She was absolutely amazing! Within about 15 minutes, she had diagnosed me and said she was going to order blood work, including: CBC, Comprehensive Metabolic Panel (to check kidney and liver function, electrolytes, etc), Rheumatoid Factor, ANA, Sed Rate and something I had never heard of called an anti-CCP. She said the anti-CCP was a rather new test that had proven to help diagnose people with what seemed like RA symptoms when all other blood work was normal. The test took about 12-14 days to come back but she had already scheduled me to see a Rheumatologist.
I was officially diagnoses with RA in July and was started on prednisone and Plaquenil. As a nurse, I was not too crazy about taking prednisone (it has nasty side effects) but anything was better than nothing. I was weaned off the prednisone in September and started on sulfasalazine. Although my sulfasalazine dose has been tripled, I am happy and pain free on most days. I also try to eat a low fat, healthy diet and exercise frequently. Foods high in fat release inflammatory markers that can cause flare ups, so lots of fresh fruits and veggies are my thing (fortunately, I love them anyway!).
I know how frustrating it is to be told over and over that nothing is wrong with you, that it's all in your head, your being dramatic, or are just stressed. The best advocate for yourself is YOU, so don't be afraid to do what you need to do to keep yourself healthy and pain free. It took me a long time to realize that it IS possible to live life without pain. Best wishes and God bless!!!
Oh my sounds like me. I can't get a diagnosis and feel that my NP is beginning to think its in my head. They have checked my RA factor in the past and tell me its fine. 3-4 years ago they said I have fibromyalgia. But now my feet feel like I'm walking on broken glass all the time, they get extremely hot, sometimes feeling like they are wrapped in hot coals, and some swelling. The pain I've been in over the last 4 years is driving my crazy. it all started with 2 hearniated disks in my neck and surgery for that, since then its been all downhill. I need help on which way to turn to find a diagnosis of some sort other than that I'm crazy. Cause sometimes it just feels that way.
My blood work came back normal as well. I'm not even surprised anymore. Last week my RA Dr. explained 4 classifications of the 7 which do not require blood work. They are as follows.
1. Symmetrical affected areas.
2. Joint stiffness which lasts 2+hours.
3. More than 3 affected areas.
4. Joint swelling in the hands, specifically the middle knuckle, and wrist.
5. xray changes. ( I haven't had any of these yet!)
that is all I have been told. Good luck, keep us posted, in a strange way it is a relief to know there are others out there who have neg. labs, and we know it isn't just in your head! Happy Thanksgiving. :)
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Thank you, I am trying to keep striving for a diagnosis. I have had my doctor tell me that there is no clinical reason why I am ill, he was in a round about way saying that it is in my head because he cannot figure it out. Doctors today, unfortunately, are more concerned with quantity than they they are with quality. If they cannot figure it out in your allotted five minutes or if it does not show up on a blood test then you are out of luck. Unfortunately for me my disease process has not followed a script. I have been told that it could be this or it could be that only to have my blood work come back within normal limits. It is so frustrating. When I broke my collarbone a few months ago I had a doctor tell me just how bad my spine looked and I began to look at RA. It made sense and I called my doc. He said that he had done all of the RA screening tests. But it is the ONLY thing that it could be. I have a Rheum visit scheduled for Dec 7. Is there a criteria for a diagnosis other than bloodwork? what do I need to ask or do you have any suggestions. Have you ever had anyone tell you that they actually hoped that it came back positive? I know how serious RA is but to put the correct face and name on what torments me and my family would be a milestone. I have suffered for so long that even death does not scare me, what scares me is life in my current condition with no treatment. Thank you for your help!