Sjögren’s Syndrome: how do you manage the symptoms?

I’m sorry you had to endure an appointment with such an unfeeling doctor. Hope the next one turns out to be better!

Thank you
My next one in a month is at a large highly regarded hospital I probably should have went to anyway. Someone recommended a specific doctor and I was lucky I got a appointment so soon because of a cancelation.

Hello a doc (neurologist) that I saw at Mayo diagnosed my Sjogrens. I have joint/muscle/bone pain and he said it was sjogrens arthritis (not fibro). Sjogrens is a vicious disease in my opinion and some docs still refer to as a little dryness. It caused my small fiber neuropathy and dysautonomia/POTS. I did not initially have dryness but still had a positive lip biopsy. Mine started with the POTS/dysautonomia/SFN brain fog and dropping items. I found that at larger teaching hopsitals docs are more informed concerning Sjogrens.

I hope you find some relief soon. The following has helped me deal with my symptoms. I was diagnosed with Primary Sjogren's in March of 2013 at the Mayo Clinic in Rochester. If you are just starting on this journey make sure you know some key things. Do you have Primary or Secondary Sjogren's? Know your CRP level. The C-Reactive protein test tells you your level of inflammation. Like most autoimmune diseases, Sjogren's is a disease of inflammation. Learn to control your inflammation levels and you will reduce symptoms. My CRP level before my diagnosis was 124. It took several years to get it down to the 3-4 range that I now maintain. In 2014 I started the AIP diet ( http://www.autoimmunewellness.com ). This was a life changer for me. I was able to put away the two walking canes that I used to get around and within 4-months was able to walk a mile without pain. I have maintained this diet since 2014. For other ways to deal with symptoms, I have cool mist humidifiers in my living/dining and bedroom. I use Refresh preservative free eye drops 3-4 times a day, use Systane preservative free night time ointment, and Biotene dry mouth products. I have my teeth cleaned every three months and my eyes checked every six months. I have been pain free and stable for years. You'll probably experience flares every now and then. I'm the first to admit that the AIP diet is not an easy one to stick to but for me it works and I've just developed my lifestyle around it. Hope you find something that works for you. My experience is that Sjogren's is not a disease in which you can take a pill and hope everything goes away. The choices you make about diet, exercise, and drugs/no drugs, will help you develop a path to wellness that works for you. It takes time but you can do it. The Mayo, Cleveland Clinic, and John Hopkin's websites all offer information about Sjogren's.

For reputable info about Sjogren’s disease look up Sjogren’s Advocate. Fibromyalgia is often a subset of Sjogren’s and not a separate entity.

I like your protocol for handling symptoms. Regarding exercise, some days I just hurt to much. Do you push yourself through on those days or do you just take a day off?

For me, exercise helps reduce the pain of inflammation. At the beginning of my healing process I would pull back on exercise when inflammation caused pain. At the beginning of all this, when my inflammation was so high, I used canes to help me stand and walk. I'd walk one block, rest and try for another one block later in the day. Succeeding at even a small amount of exercise is a great boost to your psyche. If one block is too much, walk in your home for 5-minutes. It does get better. I've been living with Primary Sjogren's for a long time and now have a routine of walking 1-mile a day with a 5-8 mile hike once a week. I'm in my 70's now and have added a weekly exercise routine to increase bone strength. Start small, keep moving, believe that you will get better. You may find that you are stronger than you think you are. Healing takes time.

Forgot to mention how I cope:) I exercise 5-7 times a week. Initially I had to start very slow due to the POTS. Once I started on Plaquenil/exercise some of the joint pain subsided. I have resigned myself to living with some pain. I was using a humidifier until I saw a pulmonologist at National Jewish Health. Interstitial lung disease is a risk factor, so she said no humidifiers, hot tubs, birds, down clothing.....all that said you have to decide for yourself what you can live with and without. Sjogrens affects us all differently so partner with a knowledgeable doc and do the best you can:) My disease has progressed, and we are still trying to find a drug to slow it down. I had an infection in the fall of 2018 which started this autoimmune cascade (sjogrens plus other AA diseases). Before that time I did not have autoimmune disease or if I did it was subclinical and I was symptom free. For dry mouth I use products with xylitol in them and I have some for night and some for day. Dry lips I use products with lanolin. I use autologous eye drops and steroid drops in my eyes daily. I drink 2-3 liters of fluids daily. Take care with meds that make dryness worse, I stay away from fans, stay out of the heat, take meds daily, watch my diet, and exercise almost every day (gentle exercise).

It sounds like you've found a way to live with Sjogren's. Like most diseases, this is a disease that progresses. Your rheumatologist will help you watch for signs of extra-glandular manifestations. This is when Sjogren's moves into other parts of your body not just the moisture producing glands. A word of caution for readers of this post, don't panic, this happens to a small percentage of people with Sjogren's, I think it's less than 5%. I now have a Sjogren's related kidney disease, some heart manifestations and new pain in my cartilage and bones. I have scarring in a large part of my left lung from radiation treatment for breast cancer. Doctor's, during last year's check-up, initially thought that I had developed Interstitial lung disease but fortunately it is just scarring. For the small percentage of people with Sjogren's who are exhibiting extra-glandular manifestations lung disease is one of several risk factors. This is a good illustration of doctor's providing different advise based on the needs of the individual. I work with a pulmonary doctor who is monitoring my lungs. Since I'm living with compromised lung capacity, the use of the cool mist humidifier at night helps control the Sjogren's dry cough manifestation is the most difficult part of Sjogren's for me. Keeping my healthy lung moist helps stop the cough. I hope you find a solution to your new symptoms. It's frustrating monitoring new symptoms and looking for solutions but it sounds like you've created a good base of medical support and that's a big step.

@shiprock Your comments are so positive and helpful. They inspire me to get busy and not let my autoimmune disease get me down. Thank you!