Hello, I was officially diagnosed in Jan. (though I've had the dry mouth for around 7 or 8 yrs). While I thought I would feel better with a diagnoses, ie there's a name to my issues. I found I'm still having a hard time accepting that it's true. On one hand I have or had had a number of issues that can be explained by Sjogren's (dry eyes, dry mouth, mouth infections, phenomena that but me in the hospital for a week). On the other hand I can't help feeling like a hypochondriac. Sometimes I feel pretty good, other times I have more joint pain and get tired very easily. I kinda feel like I'm going a bit crazy.
Thanks for the link, it has some good information.
I don't know if I have primary or secondary S. I have Hashimoto's Thyroid, but since it only affects the thyroid and not the whole body I don't know if that counts for secondary.
I have worked up to asking about lupus. I know he was considering both when he looked at my blood work for possible S.
Thanks agian Terri. I think I need a bit of an outlet. My friends don't understand and my dad worries so much I'm kinda protecting him some what.
I'll ask my rheumatologist about Lupus at my next visit.
My dad's great but if he really knew anything about S it would crush him. Though I don't have it as nearly as bad as some.
I read some of your posts. I wish there was something more the Drs. could do. How are you holding up?
Wow, you just have so much going on. I don't know how you deal with it all. I hope SSS and any other support system you have helps you through. If you need an ear any time let me know.
MrsCrary,
Thank you for your post! Judging myself seems to have become a habit for me lately. Your very lucky to have such an understanding and supportive husband. I have to say, I'm not real big on Crazyville. But I guess I have to get used to it.
This has been a hard month for me, but I think it's getting better!!
Josh
Terri,
Thanks for asking. Compared to many people here I shouldn't be complaining. But for me June has been a bad month. I have multiple joins that have been giving me sharp pains and a host of muscle aches.
I moved up my Dr. apt. and I was disappointed. After telling him about all my pains, stress, and anxiety, he basically said stress can increase my pain and I should do more stretching.
I'm not exactly sure what I was hoping for but I didn't get it. I'm trying not to hold it against him. He's the best Dr. I have and I really respect him. Plus, everyone has bad days.
He did say that he's already done some blood tests and asked me questions that all seem to rule out Lupus, so that's good!
Although it's been rough lately, I think it's getting better.
I'm a big believer in creating our experience. While I may not be able to control the things that happen to me I can control how I respond to it.
I'd forgotten about that and I've been remembering that the last couple of days. I've decided that I'm going to have a good day regardless of what happens. So far it's working out well. I'm still achy but my stress level is way lower and overall I'm not hurting as much.
How are you doing? Are you feeling any better?
Josh
Tez_20 said:
Hello Joshedu,
How are you since you joined, are you having much pain...please update we when possible :)
Terri,
Thanks for the 
and your post.
Today was a pretty good day all things considered. My spirits are improving.
My joint pain was one of the reasons I started seeing him in the first place. My primary Dr. initially diagnosed me with Arthritis. But my rheumo took a few X-rays when I first started seeing him. He said my bones looked great and there wasn't any evidence of Arthritis.
On really bad days I take OTC iburophen. It helps with the muscle aches but it doesn't seem to do much for the sharper pain. I'll ask him about RX strength next time I see him. I'll definitely going to try the swimming. I've been thinking about going swimming lately any way.
Thanks again, your posts have really helped. Feel free to vent anytime.
Here's to FIGHTING!!
Tez_20 said:
Hello Josh,
We all suffer what ever levels we're at so don't get thinking you should'nt be complaining....the reason for your joints aching now in June and it will be the same when winter comes, the weather and atmosphere affects we, causing bad aching besides swelling, it seems to me like you have secondary sjogrens if it's affecting your joints...do you have Arthritis involved with it because if you don't know that's another thing your rheumo should take notice of as it usually comes with sjogrens.
Your rheumo is right about stress besides being depressed it makes our symptoms alot worse but he could at least try you with some meds to help your pain as Iburophen do help besides....if you like swimming go swimming as it's the best for helping your joints besides muscles but i know how you feel having a right combination going on myself.
Well i am pleased Lupus as been ruled out because if you add that besides christ the two mixed are a total nightmare because they're A1 Diseases crossing one another in the blood and system.
Well if he's a good rheumo and you like him like i do mine ask for Iburophen to help you pain...my rheumo as put me on 1200mg daily until i see him in 3mths as i've more or less begged for methotrexate which sjogrens patients can take because like yourself the pain is way to much.
Josh it's all about fighting it and not letting it rule we mentally...i have my down days and my depression hits me out the blue and that's another fight but i look at life like this...there's more people out there in worser states who don't know one day to the next.
Keeping fighting mate and keep that positive attitude and i'm here for you anytime.
Terri,
Don't feel bad about venting!! That's what this site is all about. And you've certainly listened to me vent. I really hope your dr gives you the methotrexate. When your in extreme pain your quality of life really drops. Even some relief can greatly improve your overall situation.
The dr. did some blood work for Arthritis and all came back normal. I still think I have some kind of Arthritis though. My sharp pains are at joins but it's hard to determine if it's the joints themselves or the muscles that are attached. The sensation is like someone has stabbed me with a big knife and then they move it around as I try to move.
Josh
Terri,
No worries. Good luck, I hope your dr. cooperates. Have you ruled out Fibromyalgia? Here a link to an article from Dr. OZ on Sjogren's and Fibromyalgia.
http://www.doctoroz.com/blog/jacob-teitelbaum-md/why-theres-more-sjogrens-syndrome-venus-williams
Here's a site that lists some info on pain meds (look at the bottom of the page).
Here's one last site I found. This one talks about different types of medication for Rheumatoid Arthritis.
I know you've looked into a number or medication options and you can't take the normal one's. But who knows maybe there's one you haven't heard of yet.
Your right about my joint pains, they are definitely deep pains. I think that's one reason that ice/heat doesn't work all that well on my hips and shoulder. The temp. change isn't getting far enough into the body. I'm too tired right now to try to figure out what's behind it. But it's on my list. Thank's Terri.
8-)
Josh
Mrs. Crary,
It's good to know I'm not the only one with joint pains with neg. x-rays and blood tests.
I'm glad to hear your fibromyalgia is under control and not hurting you as much.
Interesting about the lactated ringers. I wonder if there is some kind of RX drink that we could take or a solution we could mix into a drink or something for home use. I know it wouldn't work quite as well as the solution going directly into the blood but I imagine it would be easier to get from a Dr. and easier to use.
Josh
Terri,
Thank you for your concern. All in all I doing well. Just tired and a little stressed.
I'm glad to hear you don't have fibro!! I know how frustrating it is to get drained so easily.
Thanks for letting me know about your Seronegative Arthritis discussion. I'll check it out.
Josh
Josh
I hate to say this but I feel better that there’s another guy going through the same stuff. I get heart palpitations sometimes, especially at night, that keep me awake. I’ve seen a doctor for them and I’m told they’re benign and nothing to worry about but its still stressful when it happens. Sjogrens is a tough battle. Most people have never heard of it and think you’re crazy or its in your head which makes it that much worse. Most docs don’t know much about it; just the few paragraphs they learned in medical school. Just take 1 day at a time. Somedays I feel ok others not so much. I have found that having something Inhave to do (like work) kind of forces me to get up and keep pushing forward. A lot of times once I’m up and at work I do feel better. Do you work?
Jeremy
Terri,
Thanks for your support. We'll see what the Rhumo says. I'm not sure he'll treat me any different though. He brought up physical therapy in one of my last visits. But that takes a lot of time and expense, plus I'd have to make arrangements with my office and that's problematic too.
Josh
Tez_20 said:
Josh,
I am pleased your doing not to bad but stress and depression makes symptoms worse and i alays tell members this as it's true the diseases thrieve off it and here's me a manic depressive.
I thought the seronegative arthritis you could always mention to your specialist...as i've saw on many discussions on google that it is arthritis but does'nt show blood wise and sjogrens usually as some form of arthritis with it, like i've mentioned before.
Takecare Terri :)
Jeremy,
I feel the same way. Sjogren's is not well known and because so many people who have it are women we tend to get forgotten. I haven't had any heart palpitations, but that would certainly scare me. I think most of my drs disregard my sjogren's, most likely because they know little if anything about it.
I work in an office full time. I agree that it's better that I have a job that get's me up every day. Otherwise I would lay around a lot more and that would probably make things worse. One day at a time seems to be the only way to go.
Josh
Jro1414 said:
Josh
I hate to say this but I feel better that there's another guy going through the same stuff. I get heart palpitations sometimes, especially at night, that keep me awake. I've seen a doctor for them and I'm told they're benign and nothing to worry about but its still stressful when it happens. Sjogrens is a tough battle. Most people have never heard of it and think you're crazy or its in your head which makes it that much worse. Most docs don't know much about it; just the few paragraphs they learned in medical school. Just take 1 day at a time. Somedays I feel ok others not so much. I have found that having something Inhave to do (like work) kind of forces me to get up and keep pushing forward. A lot of times once I'm up and at work I do feel better. Do you work?
Jeremy