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Sjogren's Syndrome.... I need your help with treatment and Pain Management

By Expert HERWriter April 9, 2009 - 4:09am
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I was talking to a dear friend of mine yesterday and she was telling me about one of her best friends, who has been diagnosed with Sjogren's Syndrome.

Her friend has been to multiple doctors (25!) and was treated for MS for 6 years before they discovered she actually had Sjogren's Syndrome.

This poor woman needs your help.......If you have Sjogren's and can help answer some questions below, it would be so helpful to her and to everyone who's trying to advocate for her.

She is simply not able to get her pain under control. I don't know the whole story, but it's something about the doctors not wanting to give her pain medication??? She is clearly suffering and needs pain management.

These are the questions I was wondering about:

-What is typically prescribed for severe pain for Sjogren's patients?

-Is there a diet she can follow that will help her?

-Ever heard of IVIG?? It's a drug to treat Sjogren's.

-Anyone being infused with IVIG? She has to have infusions every two weeks and it costs $8,000. Per treatment.

-Any other drugs you or someone you know is taking for Sjogren's?

Ladies, this woman is one of us. This was a woman who was on top of the world. Then she got sick, couldn't work anymore and is now in a very serious situation, physically and mentally. She may have to move, give up her place and a city she's loved. And on top of all of that, she continues to battle with her insurance company every single day over her infusions.

Honestly, we all think this could never happen to us.... But guess what-- it does.

If you have any advice, tips or can share your own story about Sjogren's Syndrome, please feel free to post back to me. I know my girl friend would be most appreciative, since she's trying to advocate for her friend. There is nothing worse than having a dear friend who's sick. I know all too well as I lost my best friend to lung cancer. And trying to advocate for her was one of the toughest things I've ever done.

Any information you can offer will be greatly appreciated. It sounds like she's in desperate need to get her pain controlled and to try and keep her life from totally unraveling.

Big hugs,


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EmpowHER Guest

Hi! I feel so badly for this poor woman, and I do know what she is going through...I am 55 yrs. old and was diagnosed with Sjogren's about 12 yrs. ago. I also have Fibromyalgia, Osteoarthritis and a skin condition called "Lichen Sclerosus", which affects the whole vaginal area and is, in itself, a totally miserable disease!
My husband and I have custody of our granddaughter, Cailey, who is 11, and we also keep her sister, Ashlyn, who is 8 about 3 nights a week while my daughter works. (Ashlyn still lives with my daughter)
We have a lot of stress in our lives emotionally, physically, mentally, and financially. Our family situation is very dysfunctional, and my daughter continues to cause all of us a lot of grief and worry. This makes the auto-immune conditions so much worse. My husband has Psoriatic Arthritis and takes infusion treatments of "Remicade" which cost us a fortune, even with insurance. I lost my job at the bank in January, so now I have no insurance and neither does my granddaughter. We can't afford to go back on my husband's insurance, as it is way too pricey.
I never know from one day to the next which symptom of which disease is going to be aggravating me. The symptoms range from diarrhea, heartburn, nausea, headaches, dizziness, itching, burning, on some days, along with aches, pains, fatigue, and dryness of everything, EVERYDAY! I pray all the time, and I know the Lord keeps me strong and helps me get through it, but it is not easy! I always just want to sit or lay down, but then there is the insurmountable laundry in heaps and piles and the dirty, messy house, that never seems to look any better!
There are some days it is a struggle to just take a shower or even fix myself a sandwich. I don't even want to get out of bed, but of course, I HAVE TO! I have to make myself keep on going.
In addition to the other conditions, I have severe Scoliosis, which
I know is playing a part in a lot of the back pain now. The doctor said I have arthritis in my spine, as well.
I need to exercise, because it would help me to lose weight and also to feel and sleep better, but I hurt so much that I never can seem to make myself take a walk or do anything else physical.
I am on the go constantly with the girls and I love them so much and want to do things with them, but most of the time, I feel like crying because I am so exhausted and everything hurts.
Does anyone else feel this way? Thanks for listening. God bless! Tina Blackwell, Columbia, SC
P.S. I don't even go to a Rheumatologist anymore, because I can't afford it, and I am so allergic to so many medicines that I can't take anything they give me other than Tylenol for pain, and Zantac and Imodium for the stomach. Also, eye drops and nose gel.

May 4, 2009 - 7:00am
EmpowHER Guest

I too was diagnosed with an auto-immune disease at 20. I was told I had Rheumatoid Arthritis & would be in a wheelchair w/in a year. Intense pain and disability. No cure. Just pain meds that made me sick... Cortisone shots, 13 aspirin a day... etc.

Here's what I've learned...The best doctors in the entire world don't have all the answers. God has all the answers... there's a reason we go through these seemingly impossible things.

I turned it all over to Him and asked what he was trying to teach me with all this pain and suffering. I didn't think I was supposed to be in a wheelchair but I was willing to do whatever He wanted even if it meant in a wheelchair. I didn't believe that my body was made to self-destruct.

I went to a chiropractor that helped my body get back in balance. I started to feel alot better. I got off all of the medicine which was poisoning my body. I felt so much better. I started to take a serious yoga class. Did yoga twice a day. Over time my body began to heal.
I quit smoking (hard to believe I ever did that!) Quit drinking soda, improved my eating habits.

Got so much better, I became well and decided that was what God called me to do. I learned that the actual name of a disease is not really that important. It's why are you breaking down, why are you sick. What's the total picture.

I am now 56 and been on a continual life journey of wellness for myself and for my patients and family. No one has all the answers, but there's alot of great alternatives to naming a disease and treating it with pharmaceuticals. Look for the cause, and find balance. Look for a trusted experienced alternative health care provider. Look for a licenced gentle Chiropractor, acupuncturist, naturopathist. A clinic with all three would be ideal. God Bless your journey.

May 1, 2009 - 6:46pm
EmpowHER Guest

I really enjoyed reading your comments--so much to learn and

to my fellow nurse--

you are right
a positive antibodies result can or cannot diagnose anything anymore.

Must really confuse everyone?

For every test I have had when the results come back wether they are

positive OR negative

the Doc reply is always

""well that doesn't mean anything it could be a false negative or a false positive.""
....it is almost comical--so really how do all these tests help?

They make $$$$$$=I would rather they put unto research.

When I went to Boston to Bringhams-the specialists told me I was positive for sjogrens secondary to antibody results and the eye tests and lip biopsy-all positive,'

Like most /the docs have assured me there is a secondary disease process as well--
you can take you pic from a long list of diagnosis.

I always tell people this is not a pissing contest to see who is worse etc...
for me it was when I STOPPED looking for what was wrong--
a title-
-a name-
-an explanation--
a million tests--
-a million meds--
-and focused on ME!!
That my life took on a more positive direction.

-how am I going to live with this?

Who will help me if I need it-

-I can't work anymore and I was tops in my career

I have lost most of my friends......

I just kindof stopped asking all those questions and became ''friends'' with my pain.

It is a HUGE part of my life.

It doesnt NEED a name anymore for me.

I just treat the symptoms.

I went to rehab once to see if they could help and I laughed because everything they were teaching me I had already figured out myself!

Probably like most of you! You learn how to do certain things differently.

Doesn't do to much to complain although we all need to have a session of crabbiness from time to time.

I DO NOT want to BECOME this disease.

Learn to live one day at a time--it is sooooo true-if you try to do more you fail.

You have to work hard at it.

Get rid of the negativity around you as much as you can.
Which is difficult--
I know--
mine was my best friend from childhood.

Don't laugh but I tell every one who can to get a dog......
My dog makes me exercise when I don't want to--comforts me--never talks back haha.....

April 28, 2009 - 12:12pm
EmpowHER Guest
Anonymous (reply to Anonymous)

I and a 28 y/o male and have painful sensory neuropathy, vasculitis, hyperthyroidism, muscle spasms, fatigue and depression to name a few of my Sjogren's complications. All you can do is to take it easy, stop going to doctors and stop trying to prove to doctors, friends and family that you "really" are sick. Live one day at a time, enjoy every single second and don't give yourself the luxury of having time to think what "might" happen. I tell you. Anything might happen. To anyone. Just live you life, do what you like and don't do what you don't like. Take care.

January 13, 2011 - 9:55am

Anon, thank you so much for writing. Your journey is interesting and I know you will help others who are reading this because you related it so carefully and in such good detail -- and that's what EmpowHer is all about. Here's wishing you the best of luck with the medicine; I hope you feel like your "normal me" again very soon!

April 27, 2009 - 10:01am
EmpowHER Guest

Hello, I'm learning about Sjogren's. AGAIN lol. Little background....I was never sick growing up, athletic and very fit for years. Had odd little symptoms here and there, just enough to think - hmm, that's odd- then it would disappear. Started a family at 25, toxemia problems with both pregnancies, then became very very ill after my second child. Thyroiditis, allergies, asthma, fatigue, horrible brain fog, aches, pains, painful intercourse for a time, etc etc. Maintained exercise routines til 36 when I had to have a kidney removed due to a birth defect (left kidney malformed & dying in my right pelvis).

Anyway, a rheumatologist diagnosed me with fibromylagia & sjogren's. Put me on plaquenil in the autumn of 1999. Fall 1999 to Fall 2000 are very clear. I felt normal, had energy again, weight was falling off a pound every other week, pain was gone,sex was good again. Then things started slipping here and there.

I never went back or mentioned sjogren's again because I didn't understand it and no one told me to be concerned about it. So I went on my merry way. I stay busy so I have no time for doctor visits.

I had a surprise pregnancy at the end of 2005. Things went well, DR took me off thyroid medicine. Baby was born healthy. About 4-5 months later Jan/2007, I thought I was having panic attacks and DR said it was post partum depression. very high blood pressure, couldn't sleep, then exhaustion for weeks. Nothing worked. Long story short....it was thyroiditis again. I eventually started repeating the same process as in 1996. But this time I have very dry skin and my elbows and knees feel like they are becoming dislocated.

Superbowl Sunday, Feb 3, 2009, I had the flu. I was oddly sick about every 6 weeks since October 2007 and kept having a deep dry cough sounding like a seal. But this flu was extremely painful from the hips down. Even prescription painkillers didn't work (vicodin & darvacet). Then off and on kidney/flank pressure. I only have one kidney so of course I was concerned. I ended up in the hospital August 28, 2009. The pain was so painful all over, my kidney pressure was horrible, blood pressure all over the place (and my normal BP is 110/70 or 100/60). Worst of all, I felt like passing out and tried lying down only to have my heart race where I was having trouble breathing and became scared with pain & tightness in my chest.

March 3, 2009, misery took me to my old family physician. I paid out of pocket instead of using my HMO PCP. Bloodwork is indicative of Sjogren's again. HMO PCP won't refer me so I'm working with my old DR. (Great lady by the way.) I'm back on plaquenil now. First week, no side effects and hoping it will work like last time.

In retrospect, I feel I may need a maintenance dose after I settle things down. I'm 42.

I don't know of anything to relieve pain. Would suggest a massage therapist and soaking in a tub along with a sleep aid. Rest has done me more good. Even if it is just 4 hours......but its 4 straight hours of steady sleep. Moving around, walk.

as for diet.....I can only suggest eating the way your mother made you eat when you were little lol. Fresh fresh fresh. eggs, toast, bacon, fruit, yogurt......real meat, not processed, salads, milk.......lately studies have shown blueberries to be a wonder fruit. i do remember one recent summer being very happy and healthy and ironically was eating blueberries all summer because my mother didn't want to waste them. So I bought a 4 lb bag of frozen berries. Great half frozen on yogurt in hot weather.

This is my experience, sorry I could not help your friend in such great pain. You may want to enquire about a hyperbaric chamber. Maybe spinal blocks or cortizone shots. Morphine? They gave me morphine in the hospital for fear of a heart attack since enzymes showed up in the bloodwork. Took all my pain away.

April 26, 2009 - 9:50pm
EmpowHER Guest

Am glad you found some help.
Your statement regarding the positive anti SSA and SSb is incorrect. A positive result does not mean that it can only be Sjogren's, nor does a negative result mean that it is not Sjogren's.

And for some reason that I don't understand, there seems to be a high number of nurses with Sjogren's diagnosis. I don't think we are more likely but, I do think we fight longer and harder to find the cause of the myriad of illnesses and symptoms that are part of this syndrome. Most of us, myself included, have a long list of documented diseases. Mine is a full page single spaced list of diagnosis.

I wish Lynn and the friend with the diagnosis the best, we must be our own advocates to address this.

April 13, 2009 - 11:49am

Lynn, thank you so very much for writing.

I am very inspired by the fact that despite your journey of the last seven years, you have found a pain medicine that is working for you and you are doing yoga and counseling. When you said this:

"This disease changes you, you have to change yourself in a good way to survive it all,"

it tells me just how much strength you have.

Just wondering, I know you said that the gluten-free diet did not bring you relief, but did you ever try going without all grains?

April 13, 2009 - 10:03am
EmpowHER Guest

I am a nurse
I have been out of work for 7 years due to pain--so bad i cannot get out of bed sometimes.
Bad headaches/swollen joints with pain/swollen face(where your parotid glands are)-dry eyes dry mouth etc....

I have multiple diagnosis about 10 I think--no one is really sure,I have had every test done known to mankind-even went to the specialists and hospitals in NYC and Boston.

I have been told I have

I have Rheumatiod Arthritis





ankylosing spondylitis

vitamin deficiencies

Lyme disease

I could go on and on

Pain????? yes and I went to 4 different pain clinics trying to find something to help.

That is hard to do when you are in crazy pain.

I took every NON narcotic known to mankind and will still try every new one that comes out.

Once I found the right pain clinic

I was given MS Contin--that didnt work

Vicodin didnt work

Then one day Kadian SR (a form of morphine)

since then I am up and walking my pain is more under control than it has ever been.
I thank God every day for this medicine.

My blood work is always a mess but never anything definative

although both my anti bodies for sjogrens were positive/which means I have it.

sed rate is high/arthritis

tests have shown osteo

Being a nurse I study all I can,,,,,,and I am hearing things in research about

''maybe it is viral''

''that all autoimmune diseases are really one in the same combined with different parts of that illness showing up differently on each individual.""

I had to learn to stop worrying about ''what it is''

and just try and keep the PAIN under control.

Hot packs on my face when the glands swell up

eye drops

optician every 6 months

special tube of oint to make saliva in my mouth

lotion to my skin

Dentists for cleaning every 3-6 months

Make sure your friend has been tested for Celiac antibodies-
and they don't do them unless you ask for them------
this disease has the same symptoms
and if you are positive
you go on a gluten free diet and usually that takes care of it.

My docs said to try a Gluten free diet even though my tests were negative just to see if it worked.It didn't
But everyone should try it.

The only medicine I have ever been given is plaqunel--which I had a reaction to and lost some vision from permanently.

That is another issue--never in my life have I been allergic to anything--now everything is an issue--sjogrens brings with it many allergic reactions,

God only knows what it is doing to the inside of my body? It affect major organs kidney/heart/lungs.

I was healthy all my life until this mess-
I turned 50 this year and had 3 heart attacks in a row
followed by emergency Cardiac Quad Bypass.....go figure???
no signs of anykind.

After being disabled with pain etc---I started to train myself for meditation
started doing yoga
started counselling--just to deal with pain and disability

You have to be good to yourself and learn ways to appreciate small things in life

This disease changes you

You have to change yourself in a good way to survive it all

sorry this is so long I just know what it is like to be out there and no one can hear you!!!...........Lynn

April 12, 2009 - 7:15pm
EmpowHER Guest
Anonymous (reply to Anonymous)

Dear Lynn,
Over am overcome by tears... I was diagnosed with lupus 5 years ago. 9 years ago I had a deep veinthrombosis and was diagnosed with factor 5 laden syndrome. Since then it has been progressive.
My symptoms are as follows: raw irritated tongue, sores that heal in my mouth, cold sores, nose sores, horseness, difficulty swolling at times, electric shock pain in my eyes and chest. Fibromylgia throughout my body. Which my rheumatologist put me on cymbalta - helps a little. neuropathy, stabbing pain that throws me for a loop. Pain in my joints especially fingers, and hands. Swelling in joints. Dizziness. Headaches on the side of my head...Well the list goes on - my rhematologist pretty much says it is unexplained territory and he is honest about he doesnt know what to do. I work in Physical Therapy and it seems to be getting harder all of the time to work...My strength in my hands have decreased. I had a brain MRI a year ago and it indicated either MS and/or sjogrens. Many times throughout the year I hav to go in for iron infusions, also anemia....But being on coumadin for 9 years. There has to be some coalation between all of these factors..........My cousin has lupus, my sister has raynauds phenonmon. When I read that SSB affects all of your organs, even down to the possibility of cirrohosis of he liver, lymphoma it scares me! I had a patient who had a daughter in law that died from sjogrens, she was a patient at the mayo clinic, she lost of sensation from her neck down, so she was on a feeding tub and could not hold her head up. The doctors gave he mega doses of steriods and chemo therapy. But unfortunately it was unsuccessful. She was 40. There has to be more educations and better treatments. These autoimmune seem to have some kind of connection. Thanks for listening, your SSB/SSA/lupus/factor 5 laden syndrome concerned warrior for a cure. ....sheila

April 24, 2010 - 7:07pm
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