Sjogrens - but rare symptoms - CNS

[Dublin]

Hi all

I wondered if there were many people out there with similar symptoms, which are different to the more usual symptoms:

I'm a male (47 years) diagnosed with Sjogrens, but with inflammation on CNS (upper spine and brain) and symptoms are extreme torso tightness and pain which flares up very easily. When I have a flare up I am housebound due to the pain/tightness in torso. I have been off work for 7 months. I can't walk for more than 10 minutes at present or else it flares up. I have recently finished an IV course of both Rituximab,  and also Cyclophosphamide with the aim of suppressing the immune system to allow the torso nerve damage to repair itself - progress is very slow and is up and down. I also have a lot of axonal neuropathy with numbness over large areas of my body - I know it's axonal as I had a nerve biopsy. My diagnosis of Sjogrens was after having had a lip biopsy and electrical testing and nerve biopsy and blood tests which were positive. I am currently on 450g lyrica per day.

Is there any others out there with these symptoms and how are you doing now? Did you get back to work?

Many thanks everyone

[SunshineDaydream]

Welcome to the board, Dublin. I don't have the symptoms you described, but maybe someone who does or did will chime in. In the meantime, your inquiry reminded me about this chapter about nervous system disorders that are common in Sjogren's patients and I thought you might be interested in reading it. http://www.painful-bladder.org/pdf/ch8.pdf

[Joe S.]

Welcome. I do not have any good news or management options for you. I can have a similar effect if I have a bad episode of PTSD. A bit of green butter on a cracker with cheese to cover the taste will give me release in about an hour.

[Sooki]

Back and neck pain is the worst.  I'm so sorry you have that.

Sjogren's can come with some nasty parts.  That said, be sure to pursue treatment (and possibly diagnosis) for the back/neck CNS stuff.  It's possible it's caused by some other condition with different treatment approaches.

And be sure your doc is treating the Sjs aggressively to keep it from progressing.

And be kind to yourself!