So frustrated

I am new to this site and I am at my wit’s end. I have Interstitial Cystitis that is refractory to treatment other than instillations of methylprednisolone, sodium bicarbonate, and lidocaine. I have had sinus surgery after going from 0-100 in a couple of months and had to go on antibiotics till the surgery was completed. I also had a right knee replacement. And I have been diagnosed with Reynaud’s Syndrome. Recently, I have rapidly been drying up like a prune. I have bilateral ductsl plugs and now am on Restasis. My Schirmer’s test was 5. My ANA is elevated, but all other tests are negative. My nose is always red with sores in it. I have rashes on my skin and can only use Clobetazole and it barely keeps thing at bay. My dermatologist is the only one who addressed the possibility of Sjogrens, but only diagnosed me with Sicca Syndrome and did not do more tests. My rheumi says i have “fibromyalgia” and instructed me to do daily repetitive exercise only (I have no trigger point pain that comes with fibro). I followed his advice for six months and did the exact same exercise routine and ended up with repetitive motion injuries. I now vary my yoga routine and I no longer have joint and muscle injury. And my lady bits have rapidly become a complete desert. My primary doc says this is all related to menopause. I have been on Osphena and now Premarin and have had no success. My cousin has Sjogrens and now since my dermatologist brought this up I did some research and now I am worried. The rheumatologist is completely dismissive and has never ordered any testing and my primary doc thinks it is only menopause. (She did testing a couple of years ago and only my ANA came out 1:600 and speckled). My dermatologist thinks it could Sjogrens but has ordered no testing and said that if I were to go on Plaquinil my rash would probably clear up. I don’t know what to think and I do not want to sound like I am self-diagnosing. Has anyone else had this problem? I just turned 57 and I feel like I am 90!

Welcome Bernadette! This is why diagnosis can sometimes take time, which is very frustrating. In the meantime, there is no reason to not get treated. Menopause certainly complicates things, as it can cause dryness of its own. That said, it certainly does sound like you have something going on. I would encourage you to keep good track of your symptoms over time,as well as how you respond to any treatments. Work with your gyn and your primary care.

For your nose, which can be very frustrating, there are different ways to deal with this. Again, you can talk with your doctor, but a saline nasal spray can help to keep things moist and more comfortable.

There are meds to treat oral/nasal dryness such as evoxac, which you can talk to your doctor about.

Anyone else have tips for Bernadette to help her through this phase?


So sorry to hear what you are going through. It seems to me that the doubt and confusion are coming from your rheumatologist, who is the very doctor who should be putting the puzzle pieces together for you. If you haven’t had your ANA checked in a couple of years, it’s definitely worth re-testing. Although mine seems to stay quite stable, one of my daughters has acquired new antibodies in the 14 years her rheumatological has been monitoring her. Anyone with a positive ANA and substantial symptoms should not be dismissed by a doctor.

Another daughter has recently been diagnosed with interstitial cystitis and I have a sneaking suspicion it also stems from her autoimmunity issues.

If possible I would visit another rheumatologist and be sure that all other doctors (ophthalmologists, dermatologists, dentists, etc) send reports and test results so he/she has all of the pieces to work with. A disease like this which can affect so many organs in so many ways is not always the first thing doctors think of, but once the evidence is gathered it should be hard to dismiss.

Please keep us posted.