Life with Sjogren's and Fibromyalgia - Just Keep Swimming...

Good morning!!  I’ve decided to use my blog not only to writing, music, and other facets of entertainment, but, also to share my journey. I’ve had significant health problems for almost two years. Initially, my rheumatologist diagnosed me with systemic lupus (SLE) on June 19, 2013. However, the medication wasn’t working and I kept getting worse and developing new symptoms. So, after second, third, and fourth opinions, my neurologist believes instead I have fibromyalgia. 

Thank you for listening, each week I will have a new installment chronicling my journey. Please, please feel free to comment, write, share. I hope to use this forum as a help to all of us, no matter what pain you are experiencing. You may also send stories to me via finlessbook at gmail dot com. I will respect your privacy and maintain your anonymity, if you so desire.

Hugs for today …

The update today is a third consult with a rheumatologist. I needed someone in my local area as my primary rheumy and just not sure the first one I had is the right choice. But, I think I found my medical “home” yesterday.

After taking a lengthy history with the nurse practitioner, I met with the doctor. She ordered labs to check levels of blood and urine. The doctor gave me the diagnosis of fibromyalgia, Sjogren’s, https://www.sjogrens.org/  and possible pre-lupus. I can deal with this and it seems most logical for the correct diagnosis and treatment path. 

Pre-lupus? It is possible that all the symptoms of extreme fatigue, muscle aches, foot and hand pain, and dry skin/hair/lips (can someone hook me up with a lifetime supply of Burt’s Bees?) are actually just Sjogren’s and not lupus at all. Sjogren’s is also an auto-immune disease.

Unsure what pre-lupus would be, I once again set about on the internet search for such a thing. Fortunately, most of information reveals that a person with lupus may develop fibromyalgia, but, usually not the reverse. So, that’s a blessing.

The doctor also added Cymbalta 

Cymbalta Link

 to my daily dose of pills. I took one yesterday and one today, cannot yet tell how this will affect me. I will say I feel an element of calm that I haven’t felt before. Not sure what that is- whether it’s the Cymbalta or just a mood thing for me. I’ll monitor. I return to this doctor in 3 weeks for the lab results and an update on the new meds.

Something she did tell me, as did my neurologist. People with fibromyalgia MUST EXERCISE! Painful or not, those muscles must be worked to avoid atrophy and maybe even further damage. You cannot sit life out in pain and do nothing if you expect to feel better. A pill won’t do it, you must move. Take yoga, pilates, the dog for a walk, dance a little bit. But, please do something. My body yells at me every day for moving, but, my brain is the boss of this train. Once I’ve moved around, I do actually feel better and less constricted.

Something else that I know now for a fact works wonders is a massage with focus on myofacial release. I know it’s expensive and not covered by most insurance, but, I found a blessing with massage! I actually had more flexibility in yoga just one day later! I was so excited. I also found a massage school convenient for me in the Dallas area and the prices are so affordable. I can cut something frivolous from the budget to afford regular massages at the school.

Well, time to go more work to do, books to write, books to read, and reviews to finish.

Hugs for today!