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Sleepless with Sjogren's

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.

dr c

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  • Brought to you by the authors of "A Body Out Of Balance". Sjögrens Forum features blog posts by Ruth Fremes and Dr. Nancy Carteron. You can also ask Dr. Carteron questions about living with and your treatment of Sjögrens.

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