Newly diagnosed - introduction

[heatherk]

Hello, I just wanted to introduce myself to everyone and share a little bit of my story.

After being diagnosed with fibromyalgia many years ago, my pain and fatigue started to spiral pretty steeply about 2 years ago. Every doctor I went to simply said, "Oh you have fibromyalgia so that is why. Here, try this other anti-depressant!" (The anti-depressants - I must have tried almost 10 different ones or more - did nothing to help with either my pain or my fatigue, by the way.) It got so bad that I was fired from my professional job 2 years ago, and eventually couldn't even work at all. Which then made me super depressed as you might imagine. I ended up losing custody of my daughter as I no longer could take care of her financially and I even ended up homeless, living in my car, for a while.

My very good friend from years back happens to be a homeless advocate and is very good at finding workable housing for people who need it, and she was able to get me a room in the house of a friend of hers, in exchange for chores around the house. This was in a different city than where I had been living, so I made a new primary care appointment there and the new doctor was very concerned about my pain and fatigue and she was the first doctor to finally run a comprehensive blood panel test. The first set of tests that she ran did not include an ANA test but one of my immune things was elevated, so she next ordered an ANA and reflex test. The ANA test was positive. SSA was the only anti-immune specific thing that came back positive but it was off of the chart (literally - the test, where negative was from 0.0 to 0.9, only went up to 8 and I was at 8 ). My titer test was 1:640. So then, she was able to make me a referral to see a rheumatologist, but then because of my insurance, I had to wait about 5 months even for my first appointment.

So - I did finally see the rheumatologist in October, and after some more blood work and a couple of appointments, she positively diagnosed me with Sjogren's and put me on plaquenil, exovac, and 15mg of prednisone. I have a few more weeks at this dose of prednisone before she wants to me start slowly tapering down but holy cow - I have not had this little of pain in very many years. Four years maybe? Maybe more... The pain is not gone, not at all, but the level is SO decreased from before!

The exovac also - I knew I had a dry mouth but I never thought too much about it before. I always ate food with plenty of water, and the pain in my saliva glands - well, before I learned about Sjogren's, I just thought it was normal. With the exovac, I still have some pain in my saliva glands and I still have to drink water with meals and have a glass of water with me every night in bed but it is still so much better.

My overwhelming fatigue however is still as bad as it was before. So my rheumatologist has prescribed Provigil. My insurance requires prior authorization for this med however so I am still waiting to see if they will agree to cover it. I am hoping desperately that they do - I really need to be able to work at least part time and I currently can't do that because it is so hard for me to even get out of bed, let alone stay up for more than a few hours at a time.

So, that's my story in a nutshell. With this diagnosis and the positive results so far, I am finally hopeful for the future. I am moving back to where my daughter lives now so that I can share custody with her father, and I am hopeful that the Plaquenil will start to work eventually to help to keep my body from attacking itself. I just need to get over this fatigue thing in the meantime... but, I am hopeful, which I hadn't been in a long time.

Thanks for listening!

[SunshineDaydream]

Welcome to the forum, heatherk. Wow, you've had quite the journey. Sounds like you've turned a corner and things are looking up again. I hope the plaquenil works for you quicker than expected and you get good news about the provigil soon.

Did the doctor say whether any of the meds you are currently on are expected to help with your salivary gland pain? Also, I hope she told you to get your eyes checked for a baseline before or soon after starting plaquenil.

[Pete0211]

Welcome aboard, Heatherk. I hope you continue to feel better and can get back on your feet! Hang in there!

[Joe S.]

Welcome to the forum.

[warmwaters]

Sorry to hear about how badly this has impacted your life!  On the good news front, the rheumatologist sounds like s/he has a good understanding of Sjogren's. It's surprising, but many of them don't.

Plaquenil will take some time to work, and doesn't work for everyone.  I've used Provigil, and it really helped me with brain fog - I was able to focus much better, and had more energy.   Unfortunately for me, I couldn't use it every day as I got really buzzed after several days.  But some people find it very helpful.  In general, we all vary quite a bit, so while you'll get some great information here, not everything will be the thing that works for you.

But there's lots of very helpful and kind people here. Please feel free to share, ask questions, and vent when you need to.

If you are interested in a particular topic, there's a search box up in the top right  that will help you find other discussions that have happened.

Best
Warmwaters (named after one my pain relief strategies)

[Kathy57]

Heatherk,

Welcome to the forum.   Your story is heart breaking, but it sounds like things are starting to look up for you.  It sounds like you have been on the Plaquinil for just a month?  Plaquinil helped me with my fatigue but it took several months for it to really kick in.

I still have underlying fatigue and fatigue from illness or flares, but my fatigue has been much improved with Plaquinil.  I quit my full time job before I was diagnosed because I just couldn't function.  I was even having trouble driving to work!

I have since gone back to work part time and this has done a lot for my self esteem.  It is such a blessing to get a proper diagnosis and treatment!  I am so thankful that you did! 

I hope you meet your goals and can reunite with your daughter.  Please keep us posted with how you are doing.  I don't know anything about provigil but I'm sure that plenty of people here can advise you about it.  I'm glad they put you on Evoxac.  I find it works much better for me than Pilocarpine.

Welcome again and I think you will find good people and good advice here.😃

Kathy