Sjogren's Syndrome Support Group

Sjogren's syndrome is an autoimmune disorder in which immune cells attack and destroy the exocrine glands that produce tears and saliva. It also associated with rheumatic disorders such as rheumatoid arthritis, and it is rheumatoid factor positive in 90 percent of cases.

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zerenitynow 07/31/2011

My dry mouth is pretty mild and I have never complained of dry eyes yet my eye doctor noticed my eyes are dry and recommended drops. The problem is pain in the jaw, sinuses, ear, back of the neck, lower back and sometimes nausea. NSAIDS are utterly useless against a joint pain flare up.

It seems like chewing gum helps if I have a flare in joint pain.
Swimming helps as does biking.
Sleeping on back instead of stomach has made nights restful.
Morning is better than late afternoon or evening.
Stress at work makes everything worse but I'm sole bread winner so quitting is not a desirable option there.
Studying for technical interviews - the intense concentration seems to make symptoms worse.

I would appreciate any tips for dealing with joint pain and fatigue associated with Sjorgren's. My Rheum appointment isn't for another three weeks. So I don't yet know details like if it's primary or secondary, if Rheumatoid Arthritis or anything is also involved. Would appreciate any tips that make you more resilient or anything that eases flare symptoms. Thanks!

At least I am grateful to have a diagnosis now 15 months after onset of symptoms.

deleted_user 08/01/2011

sorry to hear of your problems with sjs... we all know what you are going through. Before I started plaquenel, I used to take 4 ibuprophin to help with the pain... I was told by a dentist that 4 are equal to prescription strength, ibuprophin reduces swelling, and did help with the aches and pains. But stress is obviously, not good for sjs, it makes everything hurt so much more. I've been taking plaquinel for 4 months now and have begun to notice a lot of changes for the good. I didn't even realize, until now, how bad I was before... some people can't take the plaquinel but I would mention it to your rheum if he/she doesn't say anything to you about it. Good luck, hope this was helpful. ;)

zerenitynow 08/01/2011

Thank you so much for the reply! Mercifully the level of intensity has actually decreased over the last year so that I can usually make it until I get home around 6 or 7pm before a flare hits. But sometimes they just come whenever. When it started last year sometimes they would be unbearable - like a 9 out 10.

That is very hopeful to know that there is a medication that might help. I definitely want to go beyond NSAID therapy.

deleted_user 08/01/2011

Sorry about your symptoms. I use Advil for pain and my doctor is talking Plaquenil, as well.

I was wondering if it might be possible that your sinus/ear issues could be a seperate condition, apart from Sjogren's? The reason I ask, is that occasionally, I have some issues with sinus problems and the single best tool I've found is something called a "netti-pot" (there are actual demos on youtube.com on how to use it). The netti-pot resembles a gravy boat and you put a small amount of non-iodized salt (or you can buy the pre-measured packets) to warm-hot water and lean your head to one side and pour it into the upper nostril and it will stream out of the other, and vise-versa. The first couple of times you attempt it, you feel like you are choking half to death, until you get used to it, however, once you learn how to use it, it really can help clear out the sinus cavities.

Hang in there!

zerenitynow 08/01/2011

Well since you asked about sinuses :-) .. I had sinus surgery and nasal polypectomy in June of last year. We were thinking that the pain was related to the sinusitis and/or the simple the pressure of the nasal polyp. Anyhow those operations went great and I could breath much better. But the mysterious flare-ups kept occurring.

It would be interesting to know if Sjorgren's can cause problems with nasal polyposis (which I think brought on the sinus infection.) I am expert at the use of the netipot and the bottle squirter thingamabob. Anywho - my sinuses in terms on congestion and breathing have been excellent since the operation. Hardly a cold or anything. Now if I could just nail this darn joint pain.

deleted_user 08/02/2011

if pain killers arent helping ask to have your vitamin d levels checked. I had a lot of joint pain and turned out I was deficient in vitamin d which can cause joint pain - im now on a four month course of hi dose vit d - one treatment later and i feel alot better and pain is hardly there anymore.

I also use heat - hot water bottles etc when painkillers dont help x

deleted_user 08/02/2011

I was not able to use Plaquenil. Tried it twice but am allergic to it. I do use a pain med called Tramadol which helps me alot. By prescription only. It works on the same principal as a narcotic does but is not a narcotic and is not addictive. You can take up to 8 a day. So, I would talk to your Rhuemy about both Plaquenil and Tramadol. My Vitamin D levels were low also and I am on a bi weekly high dose now, but it really has not helped too much with muscle and tendon pain issues that I have. I do know it has greatly decreased sinus infections and/or bronchitis for me. They also have this anti-inflammatory gel. It is called Volteran Gel. Between the tramadol and that I get some decent relief and it does not require taking another pill.

Hope you find something that helps you with your pain. Good luck at your appointment.

zerenitynow 08/02/2011

The ENT prescribed me Tramadol. But I get really hit hard by it for some reason - although it's not supposed to be narcotic. I also had some side effects on the back end. :-) I can't imagine 8 times a day.

I tried the Voltaren gel directly on the skin over the jaw/partoids. But unfortunately it didn't seem to have much effect. I also tried Lidocaine patch on same area and likewise not the relief I was hoping for.

deleted_user 08/05/2011

When I was first diagnosed, swimming was my favorite form of exercise because it was so joint and muscle friendly. I'm not Micheal Phelps, but could "move" in the water which provided gentle stretching and improve muscle tone.

I've been lucky that my work involves a lot of sitting as a dental hygienist, but even then some days I'm coming home and have to rest for an hour before I could make dinner or change my clothes. Thankfully over time my current rheumy has been able to help me deal with sleep-robbing problems which means I'm more rested in the morning and can cope better with the stress of the day.

Getting on a disease modifier shortly after my diagnosis went a long way to reduce the joint and muscle pain as well. I took Plaquenil, 200mg twice a day for years. Currently I'm using oral Methotrexate after I developed some muscle complications with the Plaquenil. There are a bunch of other options to help reduce the severity of Sjogren's symptoms, and of course treating the associated problems with drugs like Restasis (for dry eye), Evoxac or Pilocarpine (for dry mouth) help improve the quality of life too.

deleted_user 08/05/2011

I meant to comment about the sinuses and nausea. When I have a lot of sinus drainage, it makes my GERD/acid reflux kick up and I end up nauseated and throwing up the excess mucus that has drained down my throat. Using the NeilMed sinus rinse system for the past two years has made a huge improvement in my GERD, and I'm not getting frequent sinus infections like I used to have. My new ENT guy showed me the red inflamed sinus tissues prior to the rinsing, and then after a month of twice a day rinsing, how normal my tissue looked in the sinuses. I was really surprised at the huge improvement. When my allergies aren't so bad, I used to flake out and skip some of the rinsing. Every time though I get another GERD attack with nausea and vomiting. I finally decided it's just not worth feeling that bad, so I'm much more faithful with the twice daily rinsing. I also like the NeilMed saline gel spritzer to provide moisture during the day. It gets the gel farther up into my nasal passages that the Ayr gel I used to use.

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