Hello All

[powderpuff]

Hello everyone,

I have been reading this forum for some time trying to find answers. I am happy to be among people who know what I am going through.

I am 51 years old and newly diagnosed with Sjogrens and my rheumy is trying to figure out what else I have and is calling it undifferentiated spondyloarthropathy. Recently I tested positive for the SSA ro and SSB la antibodies and ANA. This was not my first positive ANA as I was tested several years prior.

My first symptoms started in 2006, swollen left foot, nerve sensations, iritis, scalp psoriasis, and sinus problems that were so bad I had to have surgery in 2009. The rheumatologist at the time tested me for MS, Lupus and Lymes disease. The ANA performed back then was positive, 1:320, speckled pattern; however he did not feel I had enough symptoms to do further testing and sent me on my way without follow up. Between 2006 and 2012, I developed several ailments, pre-diabetes, HBP, high cholesterol and kidney disease, increasingly worse back problem, stiffness, soreness along with the same symptoms I had in 2006.

Fast forward to 2012, I suddenly developed dry eyes, stiff sore hands, neck and pelvis and many other ailments. I also noticed difficulty talking for periods of time, waking up coughing, as my mouth was getting very dry. My biggest fear is that I should have been treated in 2006 and the doctors should have delved deeper into what was causing my symptoms and now it may be too far gone. I hope that is not the case here.

I am happy to have a rheumatologist now who listens and wants to get down to the bottom of my many symptoms. I recently fired my primary doctor because she would not listen, did not accurately document my symptoms, did not want to refer me to a specialist, and was just plain dismissive toward me.

I have only been on the meds for 4 weeks and am not sure yet if they are helping me. I hope they help because I cannot imagine this pain long-term and I want to get my life back as I had to quit my job a few months ago.

Again, I am happy to be a part of this forum and look forward to sharing.

Generic Plaquenil, 200mg twice daily, methotrexate 2.5mg/4 tabs once per week, folic acid, HCTZ, stool softener, 81 mg aspirin daily, probiotic daily.

[quietdynamics]

Hello powderpuff and welcome,

It is good to hear that your finally have a Rheum who is treating you.

"I have only been on the meds for 4 weeks and am not sure yet if they are helping me."

It does take time to feel the full benefits of the meds.
Just as your symptoms increased gradually...so too the benefits will present gradually.

Keep a short journal to track the differences, and to learn what are the triggers that cause you to feel unwell. There are life adjustments that you will probably need to make...meds alone do not do it...sorry no 'magic bullet". Learning to pace yourself, etc.
The journal will help you and your Dr. at your follow-up appts. as well. (Better to be precise, then make guesstimates as progress.)

[Joe S.]

Welcome Powderpuff,

While I am glad that you found us, I do not like it that anyone else should have to deal with this health challenge. I am more frustrated when I see younger people with this illness understanding that there is so little that is being done to help us. I believe that the medical model for Auto Immune disease is wrong. I use alternative therapy because of bad reactions to Plaq and MTX.

Sjogrens: Dry eyes, dry sinuses, dry mouth, dry skin, and dry bum.

You may or may not be faced with other health challenges related to this disease that the doctors do not tell you about. Auto Immune (AI) diseases love to bring their friends. If you have one, eventually you will have more than one.

I like also suggest that people with AI diseases read Spoon Theory on the web. It helps to explain how our lives have changed and helps us understand how we can manage the changes to our lives.
http://butyoudontlooksick.com/navigation/BYDLS-TheSpoonTheory.pdf

1. Do not Panic: Anxiety can make your symptoms worse. I suggest that you read and practice the exercises in the book Feeling Good by David Burns. The book is on Cognitive Behavior Therapy (CBT). It has information on dealing with depression, grief and other mental health issues that you may face in living and managing this disease.

2. Breathe: For as long as you live always remember to breath. When we are in pain, our muscles go into a splinting action. I know that it is hard but we must remember to breathe through the pain.

3. Meditate: Meditation can help you deal with pain and symptoms. When you can do it for 15 minutes you will be at that stage. Here is a very easy meditation technique that will help you as it has helped me. Find a safe comfortable position and close your eyes. With your eyes closed, look to the top of your forehead. As you breathe in, think I am as you breathe out, think calm. Repeat as needed. Meditation can be as good as sleep.

With Sjogrens we tend to have a lot of infections so wear your polar fleece mumps scarf to bed. This will help your body to fight these infections. This link will help with the gland issues: http://www.chakraforce.com/Tonations.html#228.

Omega3, D3, C, Multivitamin, Probiotics seem to provide general support to our bodies when we are facing AI diseases. I like to add an 8oz glass of carrot juice every day to help my body generate endorphins.

I take what I call the Fabulous Five supplements and I wish I had known about them when I got my first AI disease. They are Alpha or R Lipoic Acid, Acetyl-L-Carnitine, Biotin, PQQ, and Co-Q10. As with any drug or supplement, do your own research and consult with your healthcare professional.

Sip-Swish-Swallow are the three Ss of Sjogrens.

[slccom]

Powderpuff, you need to explore disability income. Talk to your former employer, and see if they had any kind of disability insurance that you are eligible for. And Social Security. If you get better enough to get back to work, great. If not, then you really need to jump on this now.

Hugs, Sharon

[powderpuff]

Thank you all for your replies and kind words. I know this will be a place where I can learn more about this awful disease.

Sharon, I have pondered the possibility of disability and the fact that I may never work again. I have heard horror stories about Social Security and do not wish to go through my employer at all. I suppose I need to make a decision soon.

Hugs to all and have a wonderful evening.

[Cassi307]

Powderpuff I understand getting to the point where you can't work anymore. When I weighed disability vs early retirement I chose to retire. However, I have a teenager to support so I needed part time work and got lucky to find an employer that is flexible. This comes in handy now that the Sjogren's is acting up. The downside is no sick days.
Still, check out your options and when you feel up to it you can always get a new job. First of all take care of yourself.

[deeindiana]

I hate to welcome you to the "club" but at least know that the people here are always kind, quick to offer support, and willing to share their own experiences. Hang in there. I've found that my symptoms come and go, so I try to enjoy the good days and tolerate the bad.
Welcome!
Deb

[SjoDry]

Hi Powderpuff,

Welcome to the dry spot where we all gather, support and share with each other.
Sorry you had to find us under your unhealthy circumstances. There is so much great information here.
I hope your meds will be helpful and get you feeling better quickly.

Take Care.
SjoDry

[SjoGirl]

Your story is a familiar one. My PCP, other docs and I chased symptoms for three years. In part it's because these disease take time, as my rheumy says, to declare themselves. Also, symptoms are not the same from person to person.

Like you I saw someone several years ago who should have realize that my high SSB, weight loss, aches and pains, mouth ulcers, etc. were symptoms of Sjogrens. It took time and patience of a caring and persistent PCP before I was diagnosed.

As noted, medication takes time to work, up to six months. If you are on generic and it is not helping or having bad side effects ask to be put on the brand name. As also mentioned, other lifestyle changes need to be made and can help (I stopped eating gluten, sugar, no alcohol, started doing yoga, etc).

I changed so much in a few years I proposed to my husband a few months before our fifth anniversary and asked if he would marry me again since I am so different from the person he married (he said yes and I cried tears for the first time in a year when we renewed our vows last December).

Try to remember SjS being chronic means its a journey. I'm in a much better place than I was, though still take detours into darker places when I have flare.