Systemic Sjogren's or Full Body Involvement

[Shadowlake]

Hello ~ this is my first time to really post anything on this board but I've finally gotten around to it on this sunny Tuesday afternoon. I've known I've had Sjogren's through biopsy for about three years now but have known (looking back) that my body has experienced the symptoms for too many years to count.

I've had surgery after surgery and each was necessary but all were pretty much guaranteed to "fix me up in no time". I had the surgeries and each one prevented a really bad situation further down the road but did nothing in the meantime to allow me to prosper physically and on a healthier cerebral plane. These were all before my Sjogren's diagnosis.

My husband actually read something on a Sjogren's forum about a woman who was unable to breathe on her CPAP machine because her nose, mouth and sinuses dried out. My husband read about the condition of Sjogren's and called me to tell me he thought he might be onto something.

We first went to Baylor and finally on to the OU Medical Foundation's Sjogren's program where I was again tested/biopsied and received a positive diagnosis for Sjogren's. My sister went with me a few months later and was also confirmed as having Sjogren's.

I'm learning to accept a new "normal" now but I'm doing so slowly. There isn't a part of my body that hasn't been impacted by Sjogren's. My vision is not good. My gall bladder went south due to  disease and I've had several sinus surgeries in addition to a Nissen Fundoplication on my LES valve which was supposed to fix all my digestive problems. None of them made me better.

I work on keeping a good outlook but it is difficult at times especially due to brain fog and flares. About the time I think I'm on a roll and might actually be getting better I'm hit with a flare and feel as if I've lost my last friend and been hit by a truck.

I have a very loving and patient husband who, in helping out with cooking, cleaning and shopping, says he's merely doing his part for all I'd done as a stay at home mom and homemaker. I'm grateful for him every day and for other friends and family who do try to understand what living with Sjogren's is like.

I'd enjoy hearing from some of you if you're working on having as normal a life as possible and if you're trying to put your emphasis on the bright side of things.

Shalom!

[finallyadx]

Hello Shadowlake - welcome to the forum.  Sorry you have been plagued with sjogrens but so glad you found the forum - you will find members to be supportive, kind and knowledgeable.

Yes I do try to have as "normal" a life as possible, but normal is no longer what I once knew as normal.  Every day, every week and every month can be a different, new normal...but I personally try to enjoy each day as much as I can.  On the good days I do what I can to try to make up for days that I cannot do as much.  Surround yourself with supportive people - sounds like your husband is a gem!  Friends may not understand what you are going through - the spoon theory online is a great read for those friends who are having difficulty understanding your "new life" and your limitations.

You do not list any medications - are you taking any for sjogrens, such as plaquenil, evoxac, anything?  Have you found any improvements at all? 

I do not work but have three children who range in age from 10 to 5 so for me, it was a tough pill to swallow being diagnosed almost two years ago now...how will their lives change and be affected by my illness and "new life"...I have tried to make it as smooth a transition as possible and have been somewhat clever in finding ways to have them still enjoy being children on my bad days - watching movies, playing board games, reading together. 

For me, I think, most days, I have accepted my life will be different now - I am just trying to make the best of it.  There are many other members who will offer some great advice.

I hope you find some peace and some relief in symptoms.

Sending positive thoughts your way.
Please keep us posted and welcome again to the board.

Kim

[Carolina]

Hello Shadowlake (also Shalomi?)

And welcome.

Yes, it's a "LONG STRANGE TRIP" for all of us.

We need to know diagnoses,symptoms, medications (see  my signature line at the bottom).

That helps us know what you're up against...but it's all pretty familiar to most of us.

THERE IS HOPE and THERE IS HELP and RELIEF.

We have an arsenal of pills and sprays and creams and lotions, humidifiers and neck wraps, socks and you name it!

And we understand.  Believe me we understand.

So ask you questions, tell us what's on your mind.

Also Sjogren's Syndrome IS FULL BODY INVOLVEMENT for most of us.  For the majority, no, but for those of us here, you bet.

Hugs,  Elaine

[Chris]

Welcome and thanks for sharing your story!
I too, have had a few surgeries (sinus, tonsils, gallbladder). I was dx in 2011 but believe I have been sick for MANY years!
There is hope! It took many docs and meds but I do feel better today than I did at diagnosis.
A good doc is key to your well being .
Each day will be filled with new "surprises"?
There are wonderful books on the subject and the Sjogrens Foundation is a good source of info.
Hugs
Chris

[Shadowlake]

Thanks for the kind welcome! After three years of knowing I have Sjogren's no part of the illness seems particularly new to me. We spent too many years knowing what my symptoms were but unable to find a diagnosis. My children are grown, thanks be to God, but I don't think they have a real clue as to what people with Sjogren's actually experience. My children are both male and busy with lives of their own and have only heard bits and pieces here and there about what mom is going through. My critical symptoms didn't start until about 15 years ago but my boys knew we were always trying to find out what dragged me down so much of the time.

It's really hard to know for sure if I'm better than when I started all the medications about three years ago or not. To begin with, I hate medication and wasn't taking anything at all when I started "getting sick". It hit me like a ton of bricks and continues to do so today.

I have a good rheumy who seems to listen but I don't think I get to see him often enough. If I happen to see him on a day when I'm feeling better he'll move my next appointment out by month or two - for instance my next appointment after my recent one was moved out to 8 months away. That's too far away. I think about finding a doc who specializes in Sjogren's if I'm going to have to wait this long between office visits. But then I'm leery of anyone who claims to specialize in Sjogren's since I've read of some who claim a lot they are unable to back up.

In answer to your question about meds, here goes. I was first put on Neurontin which didn't help till I reached 900 mg per day and I continue on that dose. I also take Plaquenil 250 mg (I believe) once daily. Evoxac BID, Vitamin D 50,000 IU's every two weeks. Nexium 80 mg even after Nissen surgery. Wellbutrin 200 mg, 1 mg daily of Ativan as a muscle relaxant. Trazodone 25 mg for sleep at bedtime.

I'd say besides the ever-present weakness and lethargy, my biggest complaint continues to be the problems with my digestive tract. The rheumy says the whole system has been impacted and eating has become a real problem. Most of my life breakfast has been problematic - not feeling it "set well" with me so I've avoided it most of my life. Since my Nissen Fundo surgery, I've become unable to eat lunch since I swell up, bloat, have gas, pain and general feeling of being ill. In the last few months the evening meal has started to become problematic and now it's something I don't look forward to either.

I have lots of alternating constipation and diarrhea and a feeling of heaviness in my esophagus all the time now. I'm up to date on all my scopes and scans and I just continue to get worse. My vision has gotten so bad I'm having to see a Cornea Specialist and I read with one eye closed because there is such disparity in my vision.

The newest thing to happen is my Alkaline Phosphatase levels have been increasing so I was tested for Primary Biliary Cirrhosis and the test was negative. I do have a friend with Sjogren's and PBC and she has urged me to stay current with the test for PBC since I could be going into it but haven't reached the levels where the test would be positive.

I'm writing more now than I usually would but I want to share what's going on so maybe I won't feel as "different" as I do in my regular community. I have a half dozen really close friends and family members whom I trust enough to share on a regular basis about what's going on in my day to day life. That list is exclusive of my dear hubby who is literally God-sent and I wouldn't know what to do without him.

I'm a writer. I'm a newspaper columnist. I'm a decorator. I am a member of my high school reunion committee and also the person who keeps our class members connected via Facebook. I've been extremely involved in church activities.  I love to travel. I've been very physically active until the last three years and in general I'm a very positive, busy and outgoing person. That's why the downward trend in my health has been such a shock to my system.

We sold our beautiful new home where we'd hoped to live out our lives and have settled into a 1400 sq foot condo which is very nice but is not what we'd planned on. Due to arthritis of many years, sciatica, peripheral neuropathy, tendonitis, fibromyalgia and others I have very little strength or energy and this is after being very active until about six years ago. I also have problems with acid reflux after surgery to correct the problem and have chronic stomach inflammation which makes eating a real problem.

Well, there you have it in a rather large nutshell but it's what's going on in my life on a daily basis.
Thanks for listening.

Shalom!

[Katybarstool]

Hi Shadowlake

You certainly have more than your fair share of symptoms. And your digestive troubles sound horrendous. I'm so sorry that you can't enjoy eating any more. Hopefully, members with similar problems will be along to see if they can help you.

I've been diagnosed about 8 years now, but have probably had SJS since my teens, and I'm 57 now. Like you, my boys are grown, and have children of their own, for which I'm truly thankful. I can't imagine having to look after young children full-time with this condition. I need to spend days recovering after looking after my grandchildren overnight, which makes me feel a wimp, but that's how it is.

I look forward to getting to know you.

Kathyx