Newly Diagnosed with Sjogren's Syndrome

[HB33]

Hello,

I have just been diagnosed with Sjogren's Syndrome in May 2013. I have been dealing with Hashimoto's Thyroiditis for 2 years now. I have been on Synthroid for 16 months. In March of 2013 I started having pain and stiffness in my hands and knees. In April, the pain and stiffness spread to my feet, ankles, hips, shoulders, wrists, elbows, and knuckles in my hands. My tendons had started to make clicking noises around the joints in my ankles, wrists, elbows, and shoulders. I also have had the dry mouth and eyes along with blurry vision.I went to my PCP and my rheumatoid factor was 310. I was sent to a rheumatologist who indicated that I might have lupus. I was put on prednisone and then I began to experience a different type of pain. This pain is a burning pain at my hips, but it is strongest along my spine, left elbow, and shoots through both my hands. I went back to the rheumatology department and was told that this was nerve pain and that I may have fibromyalgia.  I tested positive for lupus but the doctor I saw said that I was either just beginning to have lupus or because of my history of having an autoimmune disease I tested positive. That had something to do with my ANA level. I was wondering if anyone can tell me if after having a flare in your joints you suffered nerve pain? Is it possible to have damaged nerves from the joint inflammation? I am wondering if the prednisone uncovered the nerve damage that had been done. Or could the joint pain lead to fibromyalgia? I would appreciate any help that could be given on this. This is all new to me and I have never had any kind of persistent pain like this before. Thank you. HB33

[Bucky]

Hi HB33 - welcome! 

As it has been with my Sjogren's, you will find it to be a roller coaster ride . . . . never really knowing what is just around the corner and up the hill.

It is my understanding that Lupus and Sjogren's are kind of "kissing cousins" if you will.  Several of our members have both Lupus and Sjogren's.  Plaquenil is the usual drug of choice for both diseases.

I would suggest you see an Ophthalmologist for your eyes so they have a baseline exam since Sjogren's affects our eyes with all the dryness.  Especially, since you mention blurriness - that can have several causes, one being dryness.  Do you currently use any type of eye drops?  It feels so good when I put drops in.  Many members also have gotten punctual plugs for their eyes which helps keep moisture in your eyes when the drops are applied.  I had some plugs, but they fell out (which is not uncommon).

Unfortunately, there is no black and white Sjogren's blueprint.  Each of us is different and have different symptoms.  What affects me, might not affect you and vice versa.

The key is to find things (lotions, eye drops, treatment, medicine) that helps you manage Sjogren's.  There is no cure for Sjogren's, but it can be managed.  Find a team of doctors that will work WITH you, and that you feel has your best interests in mind, to manage your Sjogren's.  You have to be your own health advocate - no one else can do it for you.

When you get a chance, read "The Spoon Theory" - it can relate to us too.

If there are certain topics you are interested in, put those word(s) in the search box to the top right of this page and it will take you to previous threads about it.  If you can't find what you're looking for, by all means, you can start your own thread on the Living with Sjogren's board.

I hope you find this site helpful to you on your Sjogren's journey.  Please remember, when you come here, we "get it" - as we are all on this same journey too.

Bucky

[HB33]

Thank you both for your replies to my post. I will be seeing a rheumatologist tomorrow and I hope to get some more insight. I am glad to know that there is a place online where we can all discuss and learn more about what we are all going through. I am sorry that you both are affected by Sjogren's and I wish you and everyone else the best of health. Thank you, HB33

[Velcro]

HB33, sorry, somehow I missed this post.  I have nerve pain quite often.  What you described with the joint pain, clicking, etc. is exactly what has happened to me over the last six months.

I get sharp, shooting pains down my left arm (where my linear Morphea is) all the way into my fingers at times.  I also get it on my legs.  It ranges from feeling like little electrical shocks, to last night, it felt like a bee was stinging me in my right thigh for about 15 minutes.  My PCP says it's nerve pain but I'm not sure.  I do know it has gotten worse the last month since I have been tapering off my Lyrica.  I want to come off of it, and the Rheumy said to try tapering it down and see what happens.  Lyrica is for nerve pain, and although I didn't feel like it was doing much....it very well may be doing more than I thought.  I'm down to 50 mg a night, and when I quit it, I want to see what happens.

My muscles hurt a lot, but the stinging, electrical shocks are the worst.  Fortunately, they are short lived.  Definitely tell your Rheumy tomorrow and see what he/she says.

[Carolina]

 Hi  HB33,

All of these immune-mediated conditions are related in many way.

What I find they have in common is:
fatigue
pain
depression

And of course a much longer list of 'possible' co-conditions.   

Not everyone with Sjogren's or Hashimoto's, or RA or Lupus, or whatever, develops other immune-mediated conditions, but it is fairly common for those of us posting here.  If our lives were simple, we would probably manage without help from the angels here.

But the angels who post here are 'the solution; for me for coping with my life. 

There is wisdom, science, sympathy, humor, and more on this forum.

For most of us the keys to living with chronic immune mediated conditions include learning coping methods, self-care techniques, and learning acceptance, patience, and tolerance, and developing a sense of humor (even if a bit weird).

We live in a world of human beings, and most of the time the people in our lives just won't understand what we are experiencing, or how to help us.  Sometimes we don't even know how to 'help ourselves'.

No question is too odd, specific, general, or personal.  No experience is too unusual or scary.  This is truly a home for those of us who have spent far too many hours in waiting rooms, filling out forms, having blood tests, getting conflicting answers, and having diagnoses that we don't even understand!

Welcome

Hugs

Elaine

[DolphinLuver61]

Hello HB 33, I can very well relate. I joined just recently and finally have been been diagnosed myself Monday with Sjogrens, I also have Lupus. But what I also found out on Monday is that I have  PKD (Polycystic Kidney Disease) and knew that there was something going on with my body when I was hospitalized in April. My prayers are with you, of course I know it's frustrating going through pain, lack of people understanding, but of of course it takes alot of strength, patience, and having the support and understanding of positive people who care and who are there for you. Most of all continue to love yourself, and ask questions, self educate, and don't give up.
Hugs,
Michelle

[Joe S.]

Welcome HB33,

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.