intro, vent and ???'s

Hello all! I really need some friends in my boat!

Okay, I guess mostly I just need to vent. I feel so alone right now. I 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. Completed a medrol dose pack, cortisone shots in left wrist and right fingers, started on Plaquenil and Naproxen a week ago, but still in immense pain and living on Lortab (which masks to pain long enough for me to overdue it and then leaves me exhausted.)

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 (back pain so bad I sometimes can't breath), pleuritic pain with no apparent cause, stage 4 endometriosis (partial hysterectomy in 2004). 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. Something as simple as a sinus infection might require two rounds of antibiotics and cortisone.

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 just resigned from my dream job last week after 5 months because I had to keep calling in sick and couldn't hack it anymore. I don't know what's going to happen to my health insurance now. I was only able to get it cause I was working - hubby is a small business owner with no insurance. 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 (13, 11, and 8) 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. Some days I can run a 10K, other days I can't drag myself to my kid's soccer game. I know I look inconsistent (which is terrible when parenting).

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. He doesn't understand how I can have ankle pain on day 1, be fine on day 2, have shoulder pain on day 3, want to sleep all day on day 4, and so on.... It looks "fishy" to him, I'm sure.

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

Hi RN, Jo is right it can be a long slow process to get your disease under control and it is really frustrating for all of us. Plus lots of denial along the way.
Unfortunately it can take time to get symptoms under control but fortunately these days there is quite a lot of different treatments available to try out.
Hopefully you'll be one of the lucky ones, but you have to be patient it takes time for the meds to build up in your system and for you to get full benefit.
Husbands are trickier, maybe take him with you to your next rheumy visit? Mine has come to accept theres no going back to the old me. I don't know if I fully have yet, but he is much more understanding now if I tell him I can't manage something. He's seen what happens if I push myself.
Its a horrible disease, please feel free to rant anytime you want to and welcome, golitho