Hi! I’m a 35 yo female. I have dry eyes, dry mouth, painful feet and hands, extreme fatigue, and mouth sores. My symptoms cropped up after the birth of my second son on 3/26/16. I had no motivation to do anything after he was born. I suffer from anxiety and depression so I thought I had the baby blues which is why is was sooooooo tired. But then I began to have very dry, itchy eyes. Being an RN I have heard of Sjogren’s. I started putting the pieces together and when I read the symptoms it was like I was reading a description of myself over the last six months (it’s now been a year). I made an appointment with a Rheum at the clinic where I work and she seemed really convinced that I indeed had Sjogrens. My mom had lichen planus, my maternal grandfather and uncle have ankylosing spondylitis, my maternal aunt has Crohns and my maternal cousin has RA. So, I had EVERY lab and they all came back negative. The rheum just dropped it and said my glucose was slightly elevated (109 non fasting is not high) and that could be causing the dry mouth and the meds I take for depression could be contributing. I’ve been taking those meds for years, by the way. Anyway, I went to an ENT about the dry mouth and the sores and I was just told to take a multivitamin and that my mouth sores were caused by a virus. I have had no less than 6 sores in my mouth at one time for the past year. Anyway, I’m trying to find a reliable rheum in Tampa or Orlando to get a second opinion but have no idea where to look. I tried calling and e-mailing the Sjogren’s support group leader of Tampa but got no response back. I just looking for guidance because I would like my physicians to treat me with a little more respect and believe that there really is something going on. I’m just so, so tired all the time. Thanks for letting me be a part of this group.
Welcome! Being seronegative doesn’t mean that you don’t have Sjögren’s and you may or may not develop the antibodies in the future. I’m seronegative yet have two autoimmune diagnoses. That’s so frustrating. Can they at least treat your symptoms? The real game changer for me was when I started using Evoxac to manage my dryness and sores. I also had to increase my folic acid supplementation, needed because of other meds that I’m on. What about the nerve pain issues? Are they treating that? Have you considered seeing a neurologist for that?
A second opinion would be useful.
They didn’t offer me anything. My PCP wouldn’t even address my symptoms. He directly referred me to rheum and after she got the lab results she pretty much brushed me off. The ENT said my dry mouth was probably due to my meds or lack there of. She said I needed to take a multivitamin and Co Q 10 and possibly an antiviral for my mouth sores. I throughly explained everything to all of them and yet the just blew me off. Never thought about seeing a neurologist. They would be just like the rest. I have a good reading since I work in the clinic all my doctors work. That’s why I’m trying to go to a larger city and hopefully a more seasoned physician. Thanks for the advice, Stoney!
Here’s the thing. . . .even if it was due to meds, hormones, or whatever else, why not offer you a trial on it?
On your own, have you tried Biotene or anything similar?
I do eye drops and I have the biotechnology spray but I’m constantly drinking. I don’t go anywhere without a drink. The fatigue is what really gets me. After working 8 hours a day to come home and take care of my two sons is exhausting. And my husband tries to be understanding but I’m sure he’s fed up with my “laziness” plus he thinks I’m depressed all the time.
This stage of the process is really hard. There are some meds that can be helpful, but without a diagnosis it’s hard to convince anyone to prescribe them to you. And of course, some of them can take time to work. Keep your chin up!
I’m trying to stay positive. Doing the best I can to manage my symptoms. Thanks for the support!
How about a post with the title "Can you recommend a good Sjogren’s doctor in Tampa or Orlando?"
That may garner a bit of attention from people in those areas.
Seenie from Moderator Support
Hi…I am also seronegative. I had the lip bx. It came back positive. I had my bx on 4/14/16 & got my official dx on 4/24/16 so I have not quite been dx a year yet. I have an appt with a new Rheumy on 3/28 and I am hoping she wants to start all over! Minus the lip bx (I am NEVER doing that AGAIN!!!) lol
I have Bipolar, OCD, Anxiety (social & generalized), I started my mental health journey 14 years ago. And My Psych Dr put me on a new med a week before Christmas 2016. And right as the calendar flipped to 2017 my SJS symptoms hit…severe dry mouth & fatigue. Which I contributed to the new med. But it turned out to be SJS. My PCP did check my A1C and it was on the lowest side of normal (can’t remember the actual result).
As I stated earlier, I haven’t been dx a year yet and I feel like SJS has hit me HARD!!! I have been having a myriad of “mystery symptoms” that have been going on about 9 months now. They relapse/remit of course…I have a Neuro consult on April 5th (my anniversary) so MAYBE…I can get some answers???
Welcome aboard and I wish you all the best! Hang in there. This autoimmune journey is a VERY frustrating journey, as I am sure you are already aware with you being an RN
Looking forward to getting to know you…
Thank you Lisa for sharing your story. I’m wondering if my symptoms kicked into high gear because I had just given birth. Plus, I had always been on the birth control pill but switched to an IUD because I thought the estrogen may have been promoting my anxiety. I honestly felt like the worst mother ever and still do sometimes because I’m so exhausted. I truly think if they did the biopsy it would be positive but I don’t know if I should just outright demand it or what. Thanks for the support!
There just might be something to the hormone theory and SJS IMO. And I know EXACTLY how you feel about feeling like you’re the worst mother ever. Even tho my boys are older…Lane is 19 & Lance graduates HS in May & turns 18 in June, they don’t need me as much anymore. I can’t keep up with my housework (OCD) and I don’t cook supper like I used to, i just don’t feel like ME ANYMORE!!! And the fatigue is sooooo severe some days! I still haven’t come to terms with that.
I beat myself up still for taking a nap. And some days I have taken 2 naps by noon!!! That is REALLY hard to accept! I have so much hope that my new Rheumy can get me feeling better. I think part of my problem is that I have gotten very poor medical care from my last Rheumy.
Do you have dry eyes? You can go to your eye Dr and even your dentist and they can help you get started with getting an actual dx. Even tho my lip bx was horrendous, yours may be a piece of cake!
If you ever need anything…just holler!!
I do have dry eyes and I talked to my opthamologist about it but she said that since I live in Florida allergy season is pretty much all year round and that’s what she thinks my problem is and then I should just use over the counter allergy eye drops. So that’s what I’ve been doing for my eyes and I just constantly drink for my mouth and use the Biotene spray. I just recently was at my dentist and I have a bunch of cavities however, he didn’t seem too concerned about my dryness or my stores or the cavities other than the fact that I need to get them filled at some point. I feel like nobody’s really listening to me and as a nurse I put all of the symptoms together for them and they still don’t want to listen. I would hate to be the average person that can’t even do that.
That happened with my blood sugar immediately following the birth of my daughter, that crazy fast change in status. And when my son, my second, was about nine months old I started with joint pain and swelling and extreme fatigue. It was very challenging with such a young child.