I've had shingles too - wow, what a pain they are! I was diagnosed with fibromyalgia way before SS was considered, probably because the muscle pains were more troublesome until the eye stuff became more prominent. As far as whether or not your pain is SS, or fibromyalgia, the question is probably not easily answerable, as I've found. Since I had fibro for years before more typical Sjogren's showed itself, I don't know if that means that they co-exist or they are just two manifestations of the same autoimmune disease. A really good book is published by the Sjogren's Foundation - "The Sjogren's Book" - and has a lot of info about all the various ways it can manifest itself. Good luck and welcome to the list.

I was originally diagnosed with fibro long before I ever received the diagnosis of ss. No doctor thought I had fibro except the one who was an idiot anyway.

A good rheumy is hard to find but I eventually did. I can't see him anymore because I no longer have insurance but was accepted in UNC's Charity Program. You have so much pain, etc. because of all the inflammation that is caused by the auto immune responses in your body. And, the inflammation can show up anywhere at any time. That is why so many of us experience what seems like new symptoms all the time.

Usually a drug called Plaquenil is the first line of defense against Sjogrens. It is an anti malarial drug but they found that it blocks inflammation. Next up is I think Methotrexate. With this you start getting into the anti cancer drugs which work more on your white blood cells and getting rid of some.

You may very well have fibro but I wouldn't be surprised if you don't. Also fibro is not auto immune from everything I have read. So, I believe the course of treatment would be different.

Good luck. You should get yourself a good rheumy if you don't have one.

I've also heard that some of the fatigue in SS and Fibro is caused by the body's inability to go into all the stages of sleep. I used to wake up feeling as tired as if I'd never slept, and also feeling like I was in a kind of twilight sleep. My PCP gave me a low dose of Zoloft, which seemed to do wonders for the fatigue. To get to sleep, I take 5 mg. of Ambien and my energy level is quite good most days.

Hi venice,

Sjogren's can most definitely cause joint pain, fatigue, memory problems.
As Janet said Plaquenil is generally the 1st line of defense, and while it takes about 6 months for it to kick in, when it does, it is very effective, and most people respond well to the med. For me, the intense pain in my hips, knees, shoulders has disappeared, improving my quality of life quite a bit.


I'm posting a link that has 5 articles that review the different body systems Sjogren's can effect, including Dry Eye, Mouth, Skin, Lungs, Joints, and Central Nervous System.

http://www.arthritistoday.org/about-arthritis/types-of-arthritis/sjogrens-syndrome/what-to-expect/sjogrens-syndrome-affects-body.php

I hope this helps...
Best, LuLu

Im taking plaquinel celebrex and just added lyrica yesterdsy. I woke ul this morning with the head fogging gone. What a wonderful feeling. Now tonight anxious and pain is back not able yo sleep again. Ugh! Im holding out hope for the right combo of meds. Only on plaquenil for 2 months. I keep reafing 6 months to full affect. The extremity pain and aches are crazy ridiculous.

Thank you for the responses, everyone! I literally had no idea that ss could have such a profound effect on the whole body and I am grateful to know that I am not alone. I was wondering a little bit about plaquenil, because I have tried it a couple times but stop the treatment due to an extreme migraine. Has anyone had that effect? Does it go away? It's so hard to be taking a medication that you know won't be helpful for months and is making some symptoms worse right off the bat. But I do suppose it's possible it wasn't the plaquenil, or it was the dose. It's been two years since I tried it. Is it worth it to try again?

Headache is one of the common side effects of Plaquenil, but if you are getting severe migraines I would talk to your Dr to see if the whole "Benefits Outweigh the Side Effects" thing is worth it for you, and if maybe some thing else can be RX'd to augment the migraines...maybe once your body adjusts the migraines will go away?

I know it is tough waiting for the Plaquenil to kick in...it was agony-my hips and knees were so painful, but if you can tolerate it, it does seem to be effective for many people.
A standard dose is 200mg per day.

I guess it can't hurt to bring the subject up with your Dr again...you can always stop the med if needed, and when you see your Dr, you could ask about alternative treatments?

I had the shingles real bad back in 1999. 2000 started feeling ill & fatigued. Then hot flashes every 30 minutes bad. Got the hot flashes under control with an Estrogen patch Viville Dot. I was turning 50 then. Then I woke up one morning with a severe stiff neck...that would not go away. Tried PT & shot injections, but nothing really helped except heat & ice. That lasted for a year. I do have degenerate disc problems but nothing that yells surgery. I had rib pain that doctors thought was nerve damage. Have been on Neurotin for 16yrs??? ( that's another story in the process of being weaned off of it.). Not sure if it's helping anymore.). Then over time things calmed down. I was able to do everything I did beforehand was feeling great until 2006 when I started with red bumps across my stomach,back & arms especially when I'm in a flare. Pain stated behind the knees. Panic attacks...wasn't able to sleep but one hour a night. Had all sorts of test done. Been to many specialists. They have ruled out MS, Parkinson's ., MG. I do have Hashimoto thyroid disease, Fibro, Sjogren's , & RA. I have weakness in my arms & legs. When I do a task or exert myself later I pay for it with, stinging/burning/tingling, pins & needle feeling. I get fatigued about 4-6 hrs from getting up in the morning. I walk every day even through the pain. I rest & nap in the afternoon. Most times when resting I get that burning/stinging feeling all over & my head shakes internally. It wakes me up in the morning too. My Sjogren's is dry eyes, really dry mouth, skin & itching (vaginal). I ache inmy joints & bones when I get up. Feel like I got ran over by a truck. For Sjogren's I take Plaquenil which helps some with my fatigue but not pain. I use artificial tears for my eyes. Lotion every day for my skin. Biotene toothpaste & mouthwash for the dry mouth. I drink lots of water. It's the stinging pain that scares me & the internal head shaking. Don't know what is causing that. Even my doctors don't know. They tried me on Lyrica but after 2 days of side fife st I said NO! I take 2 mg of Ativan a night to help me sleep.

As LuLu stated you might want to talk to your doc about the Plaquenil again. What happened two years ago may not happen this time around. And, as she said, if it does you can just stop the med.

Also, have you ever heard of the Shingles Vaccine? I don't know if it will help someone who has had the Shingles already. I had the vaccine as my father had Shingles so bad his doc wanted to put him in a medical book. So, I made sure I got that vaccine. You can ask your doc about that also.

I am losing all of my teeth due to Sjogrens. I take very good care of my teeth, never any plaque. But the past few years I kept losing yet another one due to no saliva for nutrition for my teeth. This past month I've had to have 3 extractions and more are already decaying!!! There is no point in getting partials because the teeth I have left are decaying too fast. :(


http://sjogrensworld.org/forums/index.php?topic=19467.0

Wow I really did not realize Sjogrens could contribute so much to my CP.
I have Rhuematoid arthritis & spinal problems.
Attempting yo learn more about SS.
When my pain management doctor seen my blood work results he made the comment you have Sjogrens?
Never fully understood why he emphasized on it.
I do have neuropathy or nerve pain which is spreading.
I assumed the inflammation from RA or spine but maybe SS is contributing in its own way.
Not a huge amount of detailed info out there on SS.
This helped me to understand a wee bit more.
Thank you for your post.
Sammy

Son-of-a....

When I was dx'd with Sjorgren's I was literally told my the doctor, "It really only causes dry eyes and mouth, that's about it."

And I thought, big whoop. I learned later that it can affect joints, but really didn't focus on it that much as being a primary issue.

Thanks for posting that article Lulu. I also have SLE Lupus - so I tend to focus on that as being the boogie man I really have to watch. But, after reading that article....alot of stuff makes sense now.

And..I scheduled an appt with my doc ASAP.