Relieved, worried and a lil scared...

[LadyofLedger]

Hi everyone,

I am going up to Boston tomorrow to Women's and Infants for my first visit to a Rheumatologist since my eye doc suggested I may have Sjogrens.  I went for a long past due eye exam, I had been having days of just horribly blurred vision with eyes that otherwise have normally perfect vision.  When my Eye Doctor finished my exam he said I had terribly dry eyes and told me about Sjogrens....and suddenly, all the pieces started to fall into place.  As I listened and then went home and further researched the disease, I felt so relieved...I now had something that explained so much.   For years, since 1999, I had suffered from chronic muscle and joint pain, first blamed on Fibromyalgia, yet I wasn't happy with that DX and asked for further testing and investigating.  Further, I was found to have a very bad disc at my L-5,S-1 area and widespread mild to moderate degenerative disc disease.  But, pretty much, nothing was really done.  PT was tried, all sorts of modalities, exercise exacerbates my pain so badly, and intermittently I was given pain medication and muscle relaxants over the years, but mostly I was left untreated in horrible chronic pain.  My husband (ex now) always made me feel like all of this was in my head, that I was a hypochondriac, that I needed to lose weight and get in shape and otherwise I was shamed and made to feel like it was my fault.

Well, as I sat in the eye dr.s office and he started listing the symptoms and when I told him my tongue in the morning is as dry as the desert and stuck to the roof of my mouth in the morning.  I mean dry as a bone like sand paper, I just figured I'd been doing a whole heck of a lot of mouth breathing!  I had been scared out of my pants some mornings because I couldn't open my left eye some mornings and I thought i was getting some kind of paralysis, but it is just so dry that the lid is actually stuck to my eye!  So, ya, I'm dry.  But more than any of that, the incredible pain that I have suffered, the deep muscle pain in my hips and S.I and low back and now neck and shoulder pain was now all tied together.  I do know and have stopped denying that since I tested with 18/18 tender trigger points of the fibromyalgia test that ya, I guess I do have that, but its much more than that.  I have argued forever that all of this has to be systemic, related, all connected, I just can't believe it has taken so many years.  I am fairly well convinced that I do have Sjogrens, the main question now is whether its primary or secondary. 

I have had a few blood tests done, I suspect the new Rheumatologist will order more tomorrow.  But I did have an RF factor above normal range and my ANA came back positive, but I don't think either were horribly high levels.  My biggest problem in this process has been getting the right pain management.  Everyone always wants to put me immediately on Nsaid, non-steroidals/anti-inflammatories and I can't take them.  So the constant battle of Doctors on edge about prescribing narcotic pain relievers has been tough.  I can say that now, for the past year I have finally been well managed for my pain.  My PC doc having read a very indepth letter from my Orthopedic surgeon relating to my disc issue and the severity of it now, has been so supportive and follows me and prescribes my pain medicines.  He had initially refused and was very concerned about this, but after finding out my degenerative discs had gone from moderate to severe and with the support of my ortho, he signed onto to over see my meds.

I have read a lot about this plaquenil and it interacts with my medicine I take for my Atrial Fib. and predisone scares the crap out of me.  It is a drug that is incredibly hard on our bodies.  So, I am probably a lil more than scared for tomorrow, yet looking so forward to the appointment to at the very least get more educated about my illness.  I'm hoping for more accurate information and hopefully a better treatment plan and ultimately less pain and stiffness and down time....

[eyeamdry]

Dear Lady,
Welcome to our forum.  I just have time to say that I take Plaquenil and a heart drug "atenol" for tachycardia and I've not had trouble.  Good luck tomorrow.  It might help if you can take a friend or relative with you to the appointment.  Be sure and let us know how you made out.  Lucy

[LadyofLedger]

Thanks Lucy,   I have spent probably too long today googling and reading and wondering.  Over the years I have had these singular symptoms that all seem to now have converged.  ITP, fibro, unexplained bad tooth decay, blurred vision, for years I've complained about getting food stuck in my throat,headaches, so much muscle pain and stiffness....and I have lived with just feeling shamed and less than for what my body is doing to me.  I have gathered as much of my medical records as I could to at least back to 2003, though everything really started in 1999 with this horrible low back and hip pain.  I think I have lots to bring the Doctor and I am going to try to write a list of things so I won't leave anything out.  I do have a wonderful and supportive fiance, having left my ex husband 3 years ago.  Jason, my fiance is so incredibly supportive and caring and loving.  He just does whatever he can to sooth me, he is like a salve.  It is an amazing breath of fresh air after years of oppression and blame and being unsupported.  To suffer with these symptoms and not be "heard" or believed was so painful and difficult.  Thanks for saying hi and the tips.  ~Lady

[Joe S.]

I also would like to welcome you. Check our signatures for suggestions.as to what we are taking. Bring an advocate with you to your appointment. Remember to breathe.

[Meld256]

Hi LadyofLedger,

Welcome to the Sjogren's fold!    I think you'll find loads of great info. here, and best of all, people who understand what you're going through.

Your story is similar to many of us here; suffering with symptoms for years that seem to make no sense or have no rhyme or reason, and not getting any answers about what is really wrong. I'm glad to hear you are taking a list to the doc.
It seems when we get a diagnosis, it all makes sense, because it all fits together like a puzzle. As you said, all the pieces seem to fall into place. I can't say if you definately have Sjogren's, of course, but it sounds as if you have many of the symptoms.

I have Fibromyalgia along with Sjogren's, and it's a combo that can be difficult to deal with sometimes.  On the brighter side, there are meds to help, and lots of good over-the-counter items that can make a huge difference.
That's great that you have such a supportive fiance.  Now you have the support of all of us here.  You are not alone! 

Keep us posted, and feel free to ask anything at all.  Looking forward to hearing more from you. Take care,
Melinda

[Pisces24]

Welome and glad you found us!!!

Unfortunately with Sjogrens, it seems to take 99% of us a long time to get a positive diagnosis.  Physchologically speaking, we have all just trusted the doctors and believed whatever they told us. If anything I have learned having Sjogrens it is to be more proactive with doctors. We have got to quit viewing them as "the Great Oz" so to speak and take a lot more active role in our health care.  Ask questions - why this test or that medicine, etc etc. Any doctor should be discussing with your that information.

I and many others here have had too many specialist that diagnose out of a textbook. If you fit the textbook, they know just what to do and are great. If you don't they just don't want to put in the time to find out. I finally got diagnosed at a research and teaching hospital and I recommend them over any specailist.

I am sorry you are going through so much.  Make yourself a list of questions you want to ask the next dr. If I don't I forget. It takes awhile to learn to be a advocate for yourself but you will learn. Good Luck!!

BTW:  I even had one specialist tell me it was probably something I got from my cat and didn't even have a cat then.