Still waiting to be formally diagnosed. Test results are back but don't really confirm Sjogren's, but my symptoms certainly do. I feel like the Sahara Desert. It was the slow motility that got me to the doctor first. After the 3rd doctor asked about my chronic constipation (that I have never had until 2 weeks ago) I thought I would lose it. Each doctor just passed the buck to someone new. It was a rectocele and cystocele that started me down this path. It is amazing what having no water will do to your pelvic floor. Then suddenly I couldn't swallow well and my eyes were so dry and miserable..... EVERY mucus membrane is affected. I find myself just rolling with grief. I have a fantastic diet, I am a runner, I drink 1/2 my body weight in ounces of water daily. I feel like I will never be normal again. Still waiting to see the rheumatologist and praying for some answers. Suppose to leave for vacation in 45 days to Mexico. Nightmare.
I feel for you- can't offer anything but sympathy though..... I'm in a similar situation- I have very dry eyes and mouth, and tiredness, but my blood came back okay. I'm in the UK so NHS is different. I used to be quite fit- I could cycle up to 30 miles, do aerobics, but none of that now as I have a neck problem too. I'm wiped out if I do a long walk now.
I hope that you can get to see the rheumy soon, and get some help. Sending you a hug, and God Bless.
Thanks Jules! Good to know that I am not alone. I ran a half marathon in September… Have high hopes that I can run again soon. Concerned that I will continue to get worse while waiting to see the “specialist”. Surfing the internet for holistic approaches. Anyone have any thoughts as to how I would fair in Mexico? Is the sun an issue? Salt water? I literally had to tell the ER doc what tests to order. OY!
Welcome to the group
I hope you have your appointment with the rheumatologist soon. I went to Mexico years ago and had a wonderful time. Listen to your body and don't over do it. Glad you have joined us.
Thanks PB! The thought of canceling our trip is too much to bare! Any issues with the sun? Normally a sun goddess (with 50 SPF of course).
I have lupus and very seldom go out in the sun. I usually walk around the yard and sit on the porch before or after the sun comes up or goes down.
How did you manage in Mexico. I don’t really have any symptoms of Lupus other than the +ANA. I have every symptom of Sjogren’s! Literally the Sahara Desert. Looking back I can see mild symptoms for years; occasional vaginal dryness, dry eyes (stopped wearing my contacts about a year ago because they bothered me), restless leg syndrome (apparently a lot of Sjogren’s folks have this too), and Eustacian Tube Dysfunction. Now I have everything all together and my mouth and throat are awful…dry!!! Drink 70 oz of water daily (weight 130) and still needed IV fluids this weekend. Nobody seems terribly concerned!
I have lupus and SS. A few summers ago a friend wanted me to go with her to a resort in Fla. During the summer. It was a brutally hot weekend. I was not able to lay out in the sun with her. So, I just sat in the shade, but somewhat briefly. I did do other fun things…shopping and interesting restaurants. I think if it was a different time of the year; more moderate in temperature, I would have been able to wear suntan lotion and a hat, etc, and spend more time at the pool. I too find PACING MYSELF VITAl as well as lots of water intake, avoiding sugar and other good eating habits… extremely important for getting along fairly well with these potentially very difficult illnesses.
Before I was prescribed Excovac ( for decreased lacrimal gland function) I choked and coughed at every meal. Restasis and punctal plugs have made my life livable for my eye involvement. Before Restasis I had ulcers on my eyes and was so miserable.
Keep your spirits up and you can get through this!