healthjourney

Rheumatoid Arthritis

I battled for 3 years to get answers as to why my joints started to hurt, and hurt so bad that I would have tears streaming down my face. It took many trips to many different Dr's and specialists some of which blew me off and told me nothing was wrong. One of which was down right abusive to finally get the diagnosis of seronegative RA, lupus and osteoarthritis. I was ANA positive but docs decided it was a false positive even though I had all the symptoms. It has been a very frustrating journey. The docs would often change their minds with what I had or didn't have as well, so you can imagine the roller coaster ride I was on. I've been through and failed all the DMARD's and Enbrel. The DMARD's added extra complications that have never resolved hence sending me to now more specialists.
Presently, I'm on Humira and it has been the only medication that has helped me. So far I've had no side effects. If you know in your "knower" that something is wrong, don't give up looking for answers. The medical world knows very little about autoimmune diseases and you know your body better than they do. Research the meds. Some are very dangerous with horrible side effects and permanent long term damage. Docs don't tell you what to expect with either the meds or the diseases. Had I not researched I would have been way more terrified with everything. I should mention that my GP finally took me seriously when raynauds showed up in front of him while I was at an appointment because my jaw was locking. It seems they need visible proof to believe you.
It's very sad how much of a battle it is to not only get docs to take you seriously, but to get a diagnosis. Blood work is non-definitive but it's what they choose to go by more often than not. I should mention I lost my bladder to IC many years ago. Last year docs told me they figure lupus caused the IC. I also have epilepsy which now docs are telling me could be lupus caused as well. I was diagnosed with epilepsy when I was 13. I'm now 47. So I've had one or both of these diseases for many years but no one caught it. I wish you all the best in your battle. Don't be afraid to stand up for yourself. Dr's work for you.
Carrie Godard
  • Blog Topics: Rheumatoid Arthritis
  • 2017: Lupus, Rheumatoid, Arthritis, Osteoarthritis

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Pain that started in a few joints and spread like wildfire to every joint. It took three years to get docs to take me seriously because blood work wasn't showing it. I saw three...