Heres the thing and in no way am I trying to diminish your problems you really DON'T have many diseases. Autoimmune diseases especially Lupus fall into (for at least 65% of patients) what is called overlap syndrome. Patients diagnosed with autoimmune rheumatic disease cannot be categorised easily into one of the established clinical entities most of the time. They have a primary disease with additional complications. Everybodies autoimmune system is different, so is their "disease"
What you tell people is that you have XXXX (your little summary sheet you get from the doctor will have it listed at the top as your primary disease. if you need to give more information (and I'm not certain one needs to most of the time) you can add :because its an autoimmune disorder there are always lots of complications, and I never quite know what to expect from day to day........... OR better yet "I have an autoimmune disorder"
Whether it is right or wrong ANY TIME you medicalize whats going on with you to your friends and acquaintances they WILL think you are a hypochondriac. And believe it or not so will your providers. Thats just the way people are wired. I'm sure some group of shrinko-psychos somewhere can explain in touchy feely terms. Okay so we all come into contact with folks everyday, who couldn't understand no matter what happened but why the medical community?
This is because of one other well know little factoid is that people who medicalize their condition into "diseases" rather than "I can't do x because of Y" or specific things/symptoms expecting their care providers to understand whats going on because of the "diagnoses" have a strong somatic component to their overall condition.
No multiple doctors is not what typically happens to us (or shouldn't.) We may come into contact with multiple doctors but they are feeding information to our two primary care providers. Our GP/PCP who cares for and refers acute situations and our Rheumy who takes care of the chronic situation everybody else is feed them information or taking care of a specific situation at their behest. Do it any other way and will be much sicker than you need be. Your rheumy will normally tell you when to call her and when to call your PCP. If you call a subspecialist every time you have a problem that you believe they need take care of you will be a mess.............. Even "House" won't be able to sort it out.
Thanks for an excellent explanation. Love the "House" reference!
No problem and thank you. Years ago, when I had lupus and ITP, I went to the rheumie and hematologist. The rheumie would treat the ITP, only if it was mild. When it reached a certain point, he referred me. After many years, it went intro remission and I barely saw either doctor. Then, I had a weird dental accident damaging the Trigeminal nerve. Honestly, all he’ll broke out after that. I got SS, then the lupus came out of remission. I was seeing a neuro for the ATN, and now had to go back to the rheumie. He DID NOT want to see me for my other illnesses. And I wasn’t sure what was related to what. This rheumie take Lupus seriously, but thinks SS is just dry eyes and mouth. I think I have a basic underlying autoimmune issue…and I would have to technically say Lupus is primary. Might that be what is causing most of my issues? The Trigeminal Neuralgia, for the most part, seems separate, since I experienced a very peculiar incident by a dentist and then the pain came. However, I
suspect SS may have made me slightly more prone to this situation.
What does medacalize mean?
I think I would like to see the rheumie, GP and neuro. I’ve already started getting rid of some doctors and putting them with the GP. I kinda wish the rheumie was more interested in that job and will talk with him about me having too many doctors at my visit next month. Years ago when I was a simpler patient, he did that for me, but he actually told me through his nurse, he only wishes to treat my lupus and SS.
ITP is a pretty common symptom of Lupus as is TN. As you likley know TN is caused by inflammation of the fifth cranial nerve. ITP is a very common predicator of lupus usually appearing about 10 years before SLE is dignosed. When it appears with SS, its even more of an indicator. Not to diminish the Sjogrens, but really and truly all it is when you have SLE (lupus) is dry mouth and dry eyes. Everything else is lupus. While ITP is usually not treated, the more common treatments for lupus are pretty darned effective. The same with TN. We have a pretty darn active lupus community at http://www.lifewithlupus.org/
I'd check them out. Medicalize is when one breaks down their illness into individual pieces with medical terminology. Or hang on to every diagnoses along the way as a disease. You are correct what you have is lupus. Everything else is at this point a result of it. Sometimes it can be overwhelming, I know. These communities can help you deal with all those pieces.
I doubt you have another autoimmune disease. SLE (lupus) is about as big as it gets. Hang in there, we are with you.
Hey Nomad…since TJ has the mechanical end covered, I'll take your first two questions. As far as what to say when and how, we were just having that discussion in another post under general discussions..Relationships with SS that might help. The Spoon Theory is a good way to explain it. I have made people read it. LOL
And having an autoimmune in general can be scary. Some days I just have to remind myself that ANYONE can walk out the door and get hit by a bus. I mean that in the sense of we have no idea what's going to happen in the future so don't worry about it before it happens. Things are a little more complicated for us, I know, but it actually helps me to remain calm and move on.
As a quick side note, I see 4 different specialists. Rheumy, eye doc, neurologist and cardiologist. While they all do their own thing, 3 out of the 4 keep in contact with each other. My eye doc (who caught this to begin with) is more peripheral but is doing what needs to be done as far as scans, etc. My primary is kept in the loop but he won't treat a symptom that is SS related. He refers me back to the rheumy to keep treatment consistent. I have other things wrong that aren't SS related so its nice that the docs do talk to each other.
TJ…thank you! Are you in the medical field?
I’m excited but also freaking out a bit. I got ITP when I was about 16 after a bad kidney infection. Everyone thought it was somehow related to the kidney infection.
Fast forward…about age 22 after some stress, I got Lupus. And it was hideous for several years. Then I had a long reprieve of hardly any symptoms.
THEN, holy cow. About 2.5 years ago I was under big time stress AND had a weird experience at a dental office. The ATN pain was over the top. That is some major major pain.
But, then both the lupus and the SS came…all sorts of stuff. The lupus HAD BEEN in remission.
Some observations YOU are the only one who has ever mentioned the correlation with an early dx of ITP and Lupus. Not one doctor has mentioned this to me. And I haven’t particularly wanted to medical-ize this mess, it has almost been encouraged. Also, stress seems to be a factor for me.
And I’m the one trying to reduce the number of doctors I have…I can’t stand it.
So I gather I have lupus and almost everything else is secondary!
I will definitely go to this other website…actually, I have been visiting it very recently.
Thank you Enjoy Life. I’m finding good old fashioned, healthy self talk an absolute necessity…which I think is along the lines of what you are saying. Even though I’ve technically had lupus for many years, it’s only been the last two or three years that so many odd and very painful things all over my body systems has occurred. I’m learning coping techniques, slowly, but surely.
My GP finds things and refers them to my docs. I’m reducing my doctors and giving her (the GP) more and more responsibility. Years ago, my rheumie took on most of this work.
Yep! That's exactly what I am talking about. We all have up and down moments but you can't let your thoughts run too far ahead. I had to learn those lessons the hard way but I'm glad because they serve me well now. Wondering how you are doing.....