New to Sjogrens

[kim77]

I was just officially diagnosed last month. I have been suffering from pain off and on for over 10 years. I had a positive ANA 10 years ago and was told by 2 rhematologists, at the time, that the positive ANA was a false positive. 3 years ago started having pain and severe fatigue, went back to the rhematologist more tests performed and no dignosis given. I was just told to return the following year. In August, I started having severe pain and my primary physician thought that the muscle and joint pain was do to a side effect from Tricor. I have been off of the tricor and had no relief from the pain. Went back to the rhematologist, had blood work done and diagnosed with Sjogrens. Prior to getting my test results back the rhematologists thought that I probably had another rheumatoid condition which was causing the pain. He said that my RF was positive so I need to let him know if I have problems with my joints. I don't think that my rhematologist knows much about sjogrens. He acts like the only problems it can cause are with my eyes and mouth. I am a RN and everything I have read about sjogrens indicates that it is systemic problem. I am very frustrated and am going to try to get a second opinion. The only thing that I have been prescribed is mobic for pain (which has done wonders for my pain). I just don't want this disease to progress rapidly.

[Joe S.]

Welcome to the forum kim77. There is a lot of information here and we have had many discussions. You should be able to search for the term "pain management" and "Spoon Theory".

I am not able to use traditional medications for this so I use alternative therapies and supplements.

[Meld256]

Hi kim,

Let me welcome you to Sjogren's World!   

I'm sorry that you needed to find us, but I think you'll see this as a very welcoming, warm and encouraging place.  There are lots of people just like you here, so we "get it."  You are not alone!

Quite a few of us have had health issues over the years and taken a long time to be diagnosed.  Unfortunately, it's also common to find that many doctors, even rheumatologists, will minimize the problems that Sjogren's and all it's related "cousins" can give us.

I'm sure that since you are an RN you're well aware that Sjogren's is not "just dry eyes and mouth".  It can cause us severe joint pain and fatigue.  The good news is that there are treatments out there.
I'm glad the mobic has helped you.  Another first-line treatment is Plaquenil.  It has helped many of us tremendously. 

I would suggest that you find another doctor. When I found my new PCP, he was very good about treating me, listening to my concerns and working with me to make my life better. That's the kind we all need whether they are a rheumy or other kind of doc.

Please try not to worry about rapid progression. Usually it is slow. Each of us are different; some of us had symptoms happen a little at a time, others seemed like all at once.  Once you have a doctor who will listen to your concerns, it should ease your fears.

Remember you can come here anytime with any questions or concerns.  We understand and we care. We're all on this journey together.    Looking forward to hearing more from you.
Take care,
Melinda

[A66eyroad]

Welcome, Kim! You've certainly come to the right place. This forum is a great place to learn, laugh, vent, and help others.

Medicine has come a long way in ten years and it sounds like the rheumy you've been seeing hasn't kept up. I agree with Meld --- Maybe it's time to find someone else. If you live in a place where you have access to more than one, I might call two or three first and see how many Sjogren's patients they have in their practice.

On the other hand, if he's the only game in town, you may have to do some educating (if he's open to it). And it sounds like you've got your work cut out for you with this guy!

My rheumy is great, I wish I could clone him for you --- but my OB/GYN is also very compassionate with me about my sjs. I wonder if one of your other docs (or nurse friends) might have some good ideas for how you can get proper treatment locally.

Keep us in the loop about what's going on with you.

[kim77]

I am going to have my PCP refer me to another rheumatologist in town. There are only 2 rheumatology practices in town (1 consists of 1 rheumy and the other has several). My friend/coworker has lupus and sees one of the rheumatologists at the other practice in town and this other rheumatologist and her nurse practitioner is very good to her. I am going to try seeing her. I am an oncology nurse that works in an infusion center, so I have had to deal with some of the rheumatologists at my hospital because we give some of their patients infusions. Some of them I would not even consider seeing because of how difficult they are to deal with on a professional level (disrespectful to nurses). But thanks for the suggestions.
My friend with lupus is helping me a great deal with finding info and keeping me in line (so to speak). She just started plaquenil and had a hard time with nausea and a weird alcohol type buzz sensation at first. But she is doing fine with it know after several weeks of taking the medication. We constantly keep tabs on each other and nag each other to get new symptoms checked out sooner rather than later. It is really nice to have someone that you see on a daily basis to understand the type of things that we go through.

[Bucky]

Hi Kim - welcome!

As already mentioned, there is a wealth of information here on this website about Sjogren's and first hand experience from members who are on the Sjogren's Road.

We're a world-wide community made up of both female and male members.  (The vast majority are women, but we do have several men too.)

Just a note to you and your friend about Plaquenil.  Make sure and take it with food - it helps.   

That's nice that you have a friend whom you trust and you both can be an encouragement to each other as you both are dealing with an autoimmune disease.  Several members here have a Sjogren's/Lupus overlap dx.

Bucky

[smallfry]

Hi Kim77

I just wanted to say welcome, and I am so glad for that you such a good friend that you can talk to and bounce ideas off, it makes a bid differance, I hope that you get your pain issuses sorted out soon.
Take care

Cheryl

[Narablueeyes]

Welcome Kim!  You've come to a great bunch of people and info!  Look around and don't be afraid to ask.

[mncjl]

Welcome!

I am also new to the forum - but not new to Sjogrens.

The wonderful thing is that they are able to diagnose this disease a little earlier all the time!

Also, the world has come up with some very unique over the counter therapies that can really help you before you go to making decisions about medications with your doctor.

BLINK TEARS and a wonderful caring opthomologist have made things much more comfortable for me!

BIOTENE PRODUCTS - a wonderful relief from harsh toothpastes etc...

Masks for nightime breathing for dry noses, masks for dry eye, antibacterial humidifiers both cold and warm and so many things that can help us! 

I hope you find the forums a warm and inviting place.

MNCJL

[Narablueeyes]

Welcome mncjl!

[Pisces24]

If one is not too far away, I would recommend a teaching/research hospital.

They will do the research to find out what the problem is and not just say it is depression or whatever. They don't diagnose out of a textbook which is good because autoimmune frequently doesn't exactly fit the textbook definiations. I like to say us Sjoggies are helping rewrite the textbooks!    I have the main dr and 1-2 interns on my visits. They listen to me, answer my questions and we decide where to go from here. They all respect each other so I dont' get the fighting diagnosees drs either.

I would definitely recommend a place like that. I already had 6 yrs of "so called" specialists giving me the run around. I heard everything from: I am sure it is some type of cancer but you are not sick enough tooooo  something you got from your cat!  Obviously after going thru all that, I am happy with my current staff of drs.

I am sorry to say, it seems to take us ALL awhile to find a good dr(s). It is a sad truth that with any diseases you get a rude wake up on your "idea" of what the medical profession is, can and will do. Good Luck!