Recently diagnosed with Sjogren's & possible MCTD

[DowntheRiver]

Hello all,

Seeking any other nurses who have been diagnosed with Sjogren's and/or Mixed Connective Tissue Disorder, or similar autoimmune conditions. I was definitively diagnosed with Sjogren's 2 months ago and probable Mixed Connective Tissue Disorder pending some more blood tests and MRIs. It is debilitating, to say the least. I'm a 10 year cancer survivor - I had Hodgkin's Lymphoma and a pericardial effusion, so health issues and pain are nothing new to me. However, this has really knocked me down and I'm having a hard time adjusting to my new limits, particularly since I consider myself young-ish (early 30's).

I am full time and have adjusted my schedule to 3 days a week.

Some questions for y'all -

How do you manage activity time with your spouse/significant other?

What works for you as far as jobs go?

If you went on disability, how long were you able to work before it became too much?

[bluegeegoo2, LPN]

Hi! I'm sorry to hear what you're going through and have been through.

I have a lot of autoimmune symptoms and have positive labs that strongly suggest as much. I have a rheumatology appt. soon, so we'll see. Current diagnosis is Fibromyalgia from my GP.

Some history: I quit nursing (again) earlier this year, and took an outdoors job. I assume that being in the cold exacerbated sx because I had a flare bad enough that I could barely walk and needed help to stand up. I was down for 3 weeks. I had to quit that job, sadly. I also never fully recovered and made the choice to go back to nursing (sob!) for the ability to make decent money on a reduced schedule. I, too, am working 3 days/wk now. I simply can't work more.

As far as my job goes, I got super lucky and landed a weekend op position in LTC (Friday-Sunday) 8 hr day shifts that pays obscenely well. I make as much in 3 days as I did working a full 40 hrs before in nursing. That allows me to maintain a sleep schedule that helps a bit with how I feel, plus allows me 4 days off a week to spend with my spouse and family and to recover some from the work days.

The units I work on are surprisingly laid back and staffing is fantastic for a LTC facility, which is immensely helpful. However, I still have a significant amount of pain and stiffness toward the end of shift and after work. If I had to work a more common LTC scenario, I'm certain that I would be unable to do so physically and mentally. I walk/sound/look and feel like an arthritic 80 yr by the time I get home.

I wish that I could offer hope, but I'm looking for it myself right now. I am also having a time trying to adjust to the new physical limitations I'm experiencing. It's hard and, to be perfectly honest, scary.

The only hope that I do have is that I'll receive a diagnosis(es) that is treatable and that some function can be restored.

If not, us humans are fairly adaptable creatures and I'm sure, given time, we'll adjust and learn to accept our new reality. Life isn't all sunshine and rainbows, but they are out there. We just have to look for them, right?

[caffeinatednurse, BSN, RN]

I'm also youngish (27 years old) with several autoimmune disorders. I have Hashimoto's thyroiditis (autoimmune thyroid disorder), fibromyalgia, systemic lupus (SLE), and inflammatory arthritis. I was diagnosed with fibro, SLE, and arthritis shortly after graduating from nursing school. I currently have three specialists who work really, really hard to keep everything in check. I'm lucky that a majority of my symptoms are effectively managed with my current medication regimen. I've been able to continue working in nursing in spite of my doubts.

During a previous flare, I worked in LTC. I worked eight hour shifts, and was able to sleep as much as I needed to. I made more money than I did at the hospital. Shortly after I was hired, I became a supervisor and was effectively off the floor and in an office during the remainder of my time there. But the stress level was really high.