Q: I have had Sjogren's Syndrome for at least 8 years now and have had insomnia for
most of those years. Is sleeplessness a true symptom of SJS even when you are
not in a flare? Ambien helps me, but my primary doctor doesn't want me on it
anymore. I tried telling her that I believe it is a symptom of SJS, but she
does not agree. I'd love to know your thoughts on this matter.
A: Insomnia does seem to be a problem for many with Autoimmune Diseases, particularly Sjogren's. Multiple things can affect ones sleep pattern, like very dry upper airways, so it is hard to design a research study that would focus on one variable like brain specific source of the insomnia.
Information you may find helpful is included in a blog post by a Sjogren's patient on Sjogren's and Sleep:
Also if you go to www.sjogrens.org, the foundation staff may be able to point you to a previous article in the Moisture Seekers newsletter or the Sjogren's Quarterly that has dealt with Insomnia.
I agree that if you never had insomnia before the Sjogren's began, then it does suggest a possible association. Research is needed in this area - as improved sleep would be beneficial.
Any of the prescription sleeping meds can be drying.
Ambien is particularly hard to get off of. A very slow taper is needed to prevent a rebound of insomnia or worse insomnia.