Rheumatoid Arthritis

Okay, I guess mostly I just need to vent. I feel so alone right now. I was just saw a rheumy for the first time last week due to pos. ANA and elevated SED, and was given a preliminary dx of RA and fibro, but may possibly be lupus. He did a ton a lab work and an MRI, but I haven't gotten results back yet. Started on Plaquenil and Naproxen.

I think my symptoms started maybe 10, or even 15 years ago. I'm 33 now, but for as long as I can remember I've had symptoms: pain in various joints (from shoulder, wrists, fingers, toes, hips, to feet) - attributed to "tendonitis," horrible sores in my mouth, extremely painful knots in my muscles all the time - especially my back, pleuritic pain with no apparent cause, stage 4 endometriosis. The most striking is that the smallest stressor will have me exhausted or all out ill.

Looking back, I can see the pattern. Everytime I go on vacation I come back seriously ill – once even with meningitis. I’m always sick during holidays. Living through a hurricane really did a number on me. Seems like anything out of the ordinary just does me in.

I have a very poor work history. On the surface it appears that I take a job and quickly get lazy or bored and quit. But the reality is that after a few months the stress or rigors of the job get to me and my body just runs out of gas. I don’t think I’m a quitter or lazy, but I know it appears that way.

My husband says I just can’t regulate myself. He says I go 300% on everything I do and then I crash and burn. But I don’t think that having a job and raising 3 kids is going 300%, because I know so many other women who do it, and don’t collapse. Just mowing the grass or cleaning house will have me in the bed for two days. When I was working I had to call in sick nearly every Friday, because by the end of the week I just collapse!

The really difficult thing is I look just fine. I am thin, pretty, apparently in good shape. My husband points out that my joints “look fine.” I don’t look sick.

I think that getting a dx is giving me permission to accept that there is a reason for these things happening to me, but I don’t know. Am I lazy? My husband is Asian and doesn’t really buy into doctors and medicine and has an enormous work ethic. He thinks he can “fix” my pain in my wrist by breaking my wrist – he’s not kidding – and no, I would never let him do that!! But getting him to understand this illness is going to be difficult. He is a sweetheart and wonderful to me, but I worry that he just thinks I’m making this up or just lazy.

Sorry so long, I’m just really confused and scared and feel so lonely! Thanks for listening!!

I was diagnosed with RA in July after almost 2 years of excrutiating pain. I had been to my family physician of almost 10 years with the same complaint: migrating joint pain, joints so stiff I couldn't move them, low grade fever, and fatigue. All of my blood work always came back negative and he attributed my symptoms to stress. I'm a nurse, which can be quite stressful, but I knew in my head and in my gut that this wasn't due to stress.

I changed insurance in July and scheduled an appointment with a new PCP. Within 15 minutes she had practically diagnosed me, sent orders for a bunch of lab (Sed Rate, Rheumatoid factor, anti-CCP, etc) and had scheduled me to see a Rheumatologist the next week. By this time, I could barely walk because my feet were so swollen and hurt terribly. I met with my Rheumatologist the next week and was officially given a diagnosis of RA. My doctor was absolutely amazing! She spent almost 2 hours with me and was very good at explaining everything.

The diagnosis of RA is just now sinking in, almost 5 months later. I was happy to finally be diagnosed instead of someone just telling me that I'm "stressed." My Rheumy started me on Plaquenil 200mg 2x/day and prednisone 10mg 2x/day for the first 6 weeks and fortunately, my x-rays showed little joint damage. Prednisone is NOT my drug of choice, it does a wonderful job with minimizing joing swelling and pain, but it has horrible side effects. I was weaned off of prednisone at my 6 week follow up and started on sulfasalazine 500 mg 2x/day. I've had a little pain and swelling but have increased my dose to 1500mg 2x/day which seems to have helped.

As a nurse, I would tell you the best thing that you can do for yourself is learn everything you can about RA from reliable sources, trust your gut, and don't bottle things up. Don't be afraid to ask questions! If you think of questions after an appointment, write them down!

I'm very fortunate to have a supportive boyfriend. He's stood by my side since this whole thing started 2 years ago. Best of luck to you and try to remember that this is very new to your husband. Nick would get frustrated with me before I was diagnosed because he didn't understand why I was so tired all the time, why I had pain, mood swings, and why I was so frustrated. My Rheumy gave me lots of useful information to take home to him.

Best of luck!!!