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Sjogren's Syndrome Support

About the New Member Checkin category

If you are a new member, sign in and say, “Hi,” introduce yourself, and share your story. We are a group of fellow Sjogrens sufferers, who are all in pursuit of improving our lives and better controlling our disease. We have all become friends and partners. Start your forum experience here.

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I am a new member, suffering terribly and looking for answers. I have all the reglular symtoms of Sjogrens, dry mouth, very dry eyes, hard to swallow, affected my gums and teeth, stomach problems, major fatigue. But now I’ve developed terrible rash and terrible itching which is driving me crazy. If anyone can share with me if they’ve had this rash and itching problem, I’d like to hear from them. Pleaseeee get in touch with me.

Hi All, I’m Cher, new member. Three days ago I didn’t know what Sjogren’s syndrome was. I thought (as does my primary Dr.) that I was a hypochondriac, crazy or both. I went to Mayo Clinic in Jacksonville, Fl (6 hr drive) for salivary stones, hoping I was a candidate for sialendoscopy. I’m not, need open surgery to remove gland (s). After Dr. went over my medical history, he asked if I had an autoimmune disease. I said “no”. He said I needed to be tested for sjogren’s syndrome. As soon as I got back to hotel room, I looked it up on my laptop…BAM!!! Every symptom I have was on that list! First I cried, I’m not crazy. All of these seemingly unrelated symptoms could be braided together and had a name. Of course, I haven’t been tested yet and I know that there are over 80 autoimmune disorders, many with similar symptoms, but I have a starting point. The one big question I need to know…I have dry eyes, especially my left, which is blind from a detached retina (symptom?) but I also produce copious tears at times, almost like an autonomic response. If I see something touching or sad on TV, I get goose bumps and the tears flow. Does this rule out sjogren’s? I have so many questions and am so thankful to find this forum.

Hello Everyone, I am a new member from Idaho. I have had Sjogren’s about 5 years, but have had joint symptoms and vasculitis for more like 15 years! Besides the dry mouth and eyes (which is tolerable), I have neuropathy in my legs and feet, and joint pain. Fatigue is not a problem for me if I routinely get 8-9 hours of sleep each night. I take Plaquenil, Cymbalta, Gabapentin and Alpha Lipoic Acid for all the symptoms. I feel that I am in fairly good control. At least, I don’t let any of the symptoms stop me from doing what I want to do! I took Imuran for a couple of years, but it started wreaking havoc with my liver, so had to stop. The side effects are so scary that I would rather suffer than take it. I am 71 years old and a retired RN.

Hi everyone! I’m Daya. I was diagnosed with RA, Sjogren’s, and Raynaud’s back in 2002. I tried the drop route but had so many side effects and then given drugs to deal with the side effects that before too long I felt worse than when I started. I then began weaning myself off all drugs, did a detox fast, changed my diet, and started moving more. That was a really good program for me up until just recently. I stayed away from a rheumatologist until last year because I did not want to go on any drugs and there was not much else that they could help me with. Last year I went to see if there was any new discoveries out there, but alas no. I did find that my RA numbers were down by about 1/2 ( although still high), but my Sjogren’s numbers went up. Just recently, I lost about 40% of my hearing in both ears, ( came on suddenly), and am having considerable trouble taking a deep breath. The severity comes and goes and so a doctor has yet to resolve the problem. I see a pulmanologist in a couple of weeks. Any way, that is a brief summary of my story. Thanks for listening.

Hello! I’m Jamie. I’m a middle school Intervention Specialist from Ohio. I’m married with a teenager and trying for another baby. For fun, I garden, exercise, and hang out with my board gaming group.
I spent most of my life dealing with dry eye issues. About 6 years ago it got really, really bad. I couldn’t stand to open my eyes because the pain, grittiness, and dryness was so bad. As you use your eyes for most things and the annoyance and pain was unrelenting, daily life was a struggle. I finally saw an eye doctor who suggested I be tested for Sjogren’s. Instead of the typical eye drops (I had been on Restasis for years with nothing changing, and tear duct plugs with minimal results), he suggested a medication (cevimeline) for dry eye. The medication worked! 3 times a day every day, but it makes a huge impact on my life.
I had a lip biopsy (which was really awful) and the results came back inconclusive, with some of the markers coming back positive and others negative. So I’m continuing treatment.
Besides that, my husband and I are trying to conceive, and my rheumatologist is concerned about the effect cevimeline might have on a fetus. There are no definitive human test results. So I was wondering if anyone has gone through this?
Also, when I went off of birth control pills for the first time in a decade I started experiencing major hot and cold flashes. I’ve read that this can be a symptom of Sjogren’s. I was wondering if anyone else has dealt with this and how they dealt with it?

Not sure if this is related but, I have just been diagnosed with SS last week. Have been suffering for the last 2 years with lots of symptoms and initially given a UCTD diagnosis. Well about 6 months ago, I started getting these welts thay were red, itchy and painful. They would turn into circular scaly spots. No one knows what they are. My skin was biopsied and the results were Prurigo Nodulares. I have tried phototherapy, topicals, methotrexate, all to no avail. The only thing that has worked for the itching is benadryl cream on the site and a prescription for pills that tame the itch.

Hello everyone, I am newly diagnosed with Sjogrens. I live in central New Hampshire.
I have been extremely exhausted for just about one year. I have never experienced such ongoing exhaustion. Previously, I was a very active person,hiking, camping and bike riding. In addition, I have joint and muscle pain in my legs, especially my knees. I am thankful that my primary care listened to me and ordered a variety of blood tests. Then she sent me to a rheumatologist who diagnosed me. He started me on hydroxychloroquine. I’ve been able to take the medication without side effects and feel a tiny bit better. I still have the leg muscle & joint pain and fatigue but I am hoping as time goes by that will improve. I do have dry eye & mouth and have difficulty swallowing bread.
I am at the beginning of trying to figure things out. I am going to see an acupuncturist this week for the first time. I am hoping I will find some relief there. I am interested in hearing from others with the diagnosis. Thanks

Hello. I am Bar, a new member in California. My goal is to live my best life after Sjogren’s, Lupus (SLE), Lichen Planopilaris (LLP), Autoimmune Thyroiditis, and Vascular Disease diagnosis.

As with most everyone, I do experience the majority of SJS complications. It is a juggling act to recognize, assess and effectively address continuing changes, and disease progressions that occur in my body. I am grateful for the exceptional medical professionals who assist me to that end.

After a medical emergency in 2009, a ruptured Brain Aneurysm
and two Aneurysm coiling surgeries, my Autoimmune issues began to present. I am thankful for the many resources available.

With much assistance from on-line tutorials, and YouTube videos, I receive direction and encouragement. On-line videos are especially relevant in the instruction and demonstration of corrective make-up application, as I also live with Hyperpigmentation (Lupus, LLP).

Did I mention the Cicatricial Alopecia diagnosis?
LOL! No really!
I am sharing here because I feel that I can.

It would seem unfair to share ALL of this with a friend, or family member that does not have a point of reference. And, I don’t want them to really feel the pain.It is overwhelming for me at times, and I have lived with it for 9 years.

On the up side, bad hair days are a choice. I always have a fresh look…on the days that I choose to go out. LOL!

Music, Art, collaborative Design projects and my Faith inspire me.

This was cathartic!
Thank You!

Hi Bar… sorry to hear you are dealing with so much but it sounds like you are keeping your sense of humor in tact. It really is our best defense some days.
And yep…this is the place you can say anything you like. Its nice for me that we can vent without either feeling like we are burdening our family or end up having to explain stuff to the about what we are dealing with. (and no a nap won’t help. LOL)
Looking forward to seeing you around here…
Lori

Hey Lori,
THANK YOU for the email!
It is my 1st (and only…it’s not the quantity but the quality, right! LOL!)
Also, it has been a while since I have been on the site.
Thank you also for your compassion.
Before I got to your msg I was reading your comments on CBD oil.
A friend and I have just made the same “discovery”!
The first product I tried was CBD Living Water that we purchased at a Natural Foods Store.
www.cbdliving.com
A 16.9 FL oz bottle cost $4.99 (not the sale price)
I am encouraged.
The “Living Water” can be sipped thru the day. I noticed less anxiety (pain induced, I’m sure), and it helped me prepare for better sleep.
My plan is to expand into the CBD oil for under the tongue. I know better sleep will help w/ pain and inflammation.
Then, we’ll go from there!

Thank you for listening!
I hope you find JOY in this day…
Bar