FRUSTRATED and angry

[Styx]

Saw my rheumy and he blew off my increased joint pain and stiffness and said sjogrens is only dryness and my joint pain is fibromyalgia.

Let's use a trebuchet to launch your rheumy into orbit

Styx

[grammad97]

Great idea Styx!
If this new rheumy would hear me and treat my symptoms or flares I wouldn't complain but since he blew off my list of three new symptoms that showed up in January I have had it with him. I gave him copies of all of my labs; doctor's reports and previous r x I had tried a year ago. None of the fibromyalgia RX work and most give me horrible side effects. Even antidepressants don't work. They make me angry and restless and weight gain.
I am on plaquenil and have been for three years. I also am on restasis ;pilocarpine;multi vitamin;omega 3;vit d3; and butrans pain patch for the joint pain. I am allergic to NSAIDS.
My hubby and I decided to meet with primary doc and see if we can ditch the rheumy for now. He wants to start testing everything again. Labs I understand getting done often but MRI; endoscopy and EMG..? I have had all in the past year/&half.

[Carolina]

Do you possibly have access to a medical center connected with a University, gramma?

It wasn't until I saw a Rheumatologist at Duke Medical Center that I had a comprehensive work up with found my profoundly suppressed immune system.

Keep us posted,

Hugs

Elaine

[Momedic]

Amazing! my rheumy said the same thing!  "it is only dry eyes and dry mouth" ... it is a shame when the patients have to teach the "specialists" their jobs!! You would think they would take the time to learn about this illness so they could treat their patients appropriately!

[grammad97]

I am in the middle of nowhere in the place I live. A university hospital is 18+ hours away. When we move back to where our kids/grandkids are I will be able to go to OHSU a major university medical Center. Until then I am going to have my primary treat my symptoms and only go to the rheumy I do not trust if I am forced to. I cannot believe he attended class the day they learnedabout sjogrens.

[slccom]

I hope you can move soon! You could consider going to the University hospital and staying a few days with the kids, though, in the meantime.

Hugs, Sharon

[Carolina]

Amen, siccom.

Elaine

[quietdynamics]

When we move back to where our kids/grandkids are I will be able to go to OHSU a major university medical Center. Until then I am going to have my primary treat my symptoms and only go to the rheumy I do not trust if I am forced to.

In the meantime I would start doing some research on the net since you are going to move and track down Drs. with the expertise to actually help you where you are going. If you find one send then an email and ask if your symptoms are ones they are familiar with?

Even at a University you do not know who you will see or what their area of interest is?

You have a Dx of SJS and Fibro,(and other issues)...a lot of symptoms do overlap...and they are not just pain, stiffness. And a flare = a double whammy. Both get new symptoms and other seem to fade as others come to the forefront.

My most beneficial Rx are Neuro based and a baby aspirin @ night to manage inflammation (  Not an option for you...) Neuro also gave Rx for Lidocaine Gel 5%...works amazingly fast. And an epson salt bath. There are many meds (and combinations) that work on neurotransmitters to control pain. Not all are "anti-depressants' of which there are many.

At this point bashing the Rheum is wasted energy, better used to help yourself.
I wonder at the Drs. who pick this specialty with patients in chronic pain, day after day...
Drs. have a right to run their practice within their guidelines.
It is clear that you and Dr. are not a good fit.

Hopefully, research and looking up Dr. Bios will find someone to treat you.

[Karen13]

The problem with doctors is that they are only human. They all come with their own biases, opinions, ability to comprehend, and all have different knowledge depending on their interests, level of study, etc... Very frustrating non-the-less! The other problem is that there are always many versions of treatment, diagnoses etc for them to learn from. I am grateful to have found a Rheumy that seems on the ball and goes by treatments that have helped her patients more than what she has learned in school.

Yes, SJS has many more symptoms than dryness... I hope you can find a new Dr who can help you!