FRUSTRATED and angry

[grammad97]

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. My other two rheumatologists said it was sjogrens.He was kind of arrogant about it too. Now what? I cant keep seeing new docs. I live 5 hours away from any rheumy. 10 years into the diagnosis and 20+ into the disease and still docs are not on board.

[SjoGirl]

Oh been there. First doc I saw said it was fibromaylgia, my PCP said that is last thing she will diagnose not the first. Now though I do wonder whether I have both because I do get pain on both sides of my body, e.g., sometimes both hips or knees (or both at the same time) will ache like crazy.

Hang in there medical system is even more broken than most of us are.

[eyeamdry]

grammad, will your GP treat you if you have one closeby?  My GP would be able to do all the things my rheumy does if I had no other dr. I have to travel a couple of hours to my rheumy, so I guess I have it good.

[THE BRIT]

  My rheumy told me that you can get a form of arthritis due to SJS and I do have it along with RA and OA so your doctor was wrong.  I do have fibro aswell but that is not my joints but pain from my nerves.

[Rachel F.]

I am so sorry! This is sooo frustrating. Maybe find a Dr. of Osteopathy? (DO) that would work with you? Maybe go to an MS support group in your area and find out where they go to get treated? There is so much autoimmune these days... there may be more in your community with autoimmune issues....

[grammad97]

I wanted to throw all of my sjogrens books at him when he brushed off my joint pain and said sjogrens is just dry eyes and mouth! I appreciate your thoughts and think I will ask my primary doc(an internal med Dr) if he can treat me without going to the rheumy since rheumy is so far away.

[Carolina]

Oh Grandma!

here's the list from the Sjogren's Foundation:

Symptoms vary from person to person but may include:
a dry, gritty or burning sensation in the eyes
dry mouth
difficulty talking, chewing or swallowing
a sore or cracked tongue
dry or burning throat
dry or peeling lips
a change in taste or smell
increased dental decay
joint pain
vaginal and skin dryness
digestive problems
dry nose
fatigue

And we KNOW that it isn't complete!  Just the basics.

http://www.sjogrens.org/home/about-sjogrens-syndrome/symptoms

Hang on.  What do you WANT?  Pain relief?  What?

It's probably related to your Sjogren's, or Osteoarthritis.

I would have hoped the Plaquenil would help.

I see you have MCTD:

Here's the list for that:

General feeling of being unwell. This malaise may be accompanied by increased fatigue and a mild fever.
Cold and numb fingers. One of the most common early indicators is known as Raynaud's phenomenon — in which your fingers feel cold and numb, often in response to cold or stress. Fingers may turn white and then purplish blue when the blood vessels constrict. After warming, the blood vessels relax, blood flow resumes and the fingers turn red. Toes also can be affected.
Swollen fingers. Many people who have mixed connective tissue disease experience swelling in their hands and fingers, sometimes to the point where the fingers resemble sausages.
Muscle and joint pain. Mixed connective tissue disease also can result in muscle aches and joint swelling and pain. In some cases, the joints may become deformed, similar to what is seen in rheumatoid arthritis.

The key for that is that there are really only two treatments:  Immunosuppressants and Cortocosteriods,

Perhaps a low level of prednisone would help?

Cymbalta and Aleve help me with pain, but we each have to find our own way.

http://www.mayoclinic.com/health/mixed-connective-tissue-disease/DS00675/DSECTION=treatments%2Dand%2Ddrugs

Your Rheumy is full of it.  Just saying.......

But get what you WANT and NEED.  If you think you are having pain that isn't connected to Sjogren's or MCTD, then this is going to be a hard thing to get dealt with.

I finally have an out of left field DX, after 15 years of misery and failing almost all the AI tests, only to find that I have Primary Immune Deficiency, which BTW can go along with AI conditions!

Persistence and patience and meditation or prayer, those will help.

Venting your frustration and anger and then replacing those thoughts (forcefully if necessary) with positive thoughts about yourself and your power to cope with this and whatever comes your way.

You will overcome!

Hugs

Keep us posted

Elaine

[LonghairWolfe]

Carolina,

You are fabulous!

[Skylar]

Hang in there medical system is even more broken than most of us are.

SjoGirl - that's so true.

I think many of us have suffered needlessly trying to find good doctors and appropriate treatment. That's why it's great to be able to come here and complain and find help.

[anita]

Sounds like your other two rheumys knew what they were talking about....why see a new one to begin with?

[star723]

Carolina and Skylar you get a gold star for the day!!   I do believe that getting the right doctor is so important. But why is it so hard to find one?? 

I have seen 3 rheumy~ 2 of which were very good but then moved away. So now I am back to my family doctor, who is kind enough to help me out but keeps telling me you need to find a new Rheumy

Coming here is the best and no charge, just wonderful people who understand!!!

[gold55]

Sounds like some of the Ophthalmologists I work with.....they were not educated in anything but SICCA syndrome and therefore refuse to look at the systemic issues that most SJS patients are dealing with!  It's so astounding!

[Myshkin]

You can tell him that my rheumy dissagree with him. She keeps telling me to up my pain killers because diffuse pain is just a part of sjogren's...

Get another doctor!

[grammad97]

I am on my fourth rheumatologist due to two of them moving and then I moved to another state. The first Dr dx me with lupus; the second did way more testing and said primary sjogrens; #3 said same plus MCTD. NOW the new one says fibromyalgia ; osteoarthritis; uctd; chronic fatigue; and chronic pain syndrome.
He only prescribed restasis for me. My primary treats each symptom. My primary put me on prednisone during my last flare. I just want to have my symptoms taken care of along with a correct dx.
I like a doc who takes my concerns seriously and addresses them. I think I am going to talk to primary and see if I can ditch rheumy.
I appreciate you all allowing me to vent and all your advice. I was feeling freaked out by all the referrals to other specialists by the rheumy for stuff I have already had addressed.  Its like starting over ore diagnosis! Ugh!

[irish]

I, personally, have had no luck with rheumatologists. The couple that i had were locked into such a narrow corner. It was like they could only think of joints and fibromyalgia and just didn't get it when I complained of other symptoms. I finally quit going and was soon after referred to an immunologist who just took one look at me and saw some symptoms and diagnosed myasthenia gravis before doing the testing. He did other tests and found about 3 other diseases also.

I really think that it is worth it to find an immunologist who is interesting in autoimmune and immune deficiencies. Some of them are more interested in the allergies and other issues. Genetic workups are quite important also as some of the stuff we can develop as often genetic in nature. Good luck. Irish