Confused by my rheumy?s statements

[MirkeshCat]

Hi there,

I was diagnosed with primary SJS in 2012, but I am sure I have the illness far longer, maybe my whole life. Symptoms have been there all the time. Since the diagnosis my general physician has checked my blood for signs of SJS three times and everytime my ANAs where at 1:10.000, SS/A and SS/B postive and above the normal levels, RF too high and so on. Six weeks ago I finally found a rheumy in my area, which was hard enough because I live in a rural place.

On my first appointment the new rheumy again did my blood work with the same results as discribed above. Then, at my second appointment I had a long talk with him. He told me that my blood results confirmed that I have primary SJS and Grave?s disease. But all that would NOT explain my litany of symptoms, fatigue being the worst of them, because there was no "active inflammation" to be found in my blood (CRP etc.). Further he stated that he thinks that my fatigue is secondary, probably psychologically induced. After that he said he would get me on 400 mg of Plaquenil and strongly suggested I do three hours of cardio exercise every week to help my general health and most of all my psyche.

Since I left his office I am really stirred up. I have fought against the fatigue for the last 10 years, and earlier in my life was a big time runner, before I got sick. Everytime I do try to do exercise I feel just terrible now.

Now I am confused - am I just a nut case? Am I basically healthy despite the SJS as long as there are no signs of inflammation?

[litliwlowa]

Oh my, what a flux you are in. Brainstorm some ideas for discussion with your PCP.

Fatigue: Graves could be a factor. As you browse the boards, you find that a number of us also have OSA (obstructive sleep apnea) which would also be a contributing factor to fatigue, from what I've read on the boards here pretty much most us struggle with fatigue that is NOT psychological. Sjogrens itself contributes to fatigue. Also, if you've been told you snore a lot, well perhaps a sleep study is in order.

On the Graves, is that being managed by an endocrinologist? If not, you may want to consider that specialty for that aspect.

I notice you're a paramedic. If you work rotating shifts, that does throw off the body's natural sleep clock - so there is another possible contributor to fatigue.

active inflammation Well, my sed rate until F/up last May was showing 0 value. Yet biopsies from non-related procedures showed chronic inflammation during the same period. No explanation for that, but my sed rate usually shows 0, yet all my doctors OBSERVE obvious inflammation in my everywhere. It is only since being on Plaquenil that my sed rate started showing a value.

Also on inflammation, again while minie is not measurable for many years on sed rate, every single MR of spine and tissue biopsy from various parts clearly reveal chronic inflammation. Why the sed rate and CRP don't reveal it, I have no idea. But then my body tends to run subclinical anyway.

As you browse the boards, you'll find a number of us has been through this same journey to appropriate diagnosis AND treatment, initially attributed to "psychological" when that isn't the root cause at all.

Sometimes we have to "kiss a few frog" doctors to get to the "prince" who doesn't automatically assume "psych" instead of considering the full scope of physiological root causes.

Sounds like his rx-ing the plaquenil shows willingness to treat. You may want to see how rheumy is on follow-up and if it's the same attitude, consider a second opinion.

Not sure what it is about some specialists lately slapping on the psych label. Seems to be a new trend.

Hugs

Amanda

[Ripvanann]

Hello Cat, I'm so sorry. This is one of the most frustrating components of dealing with AI. I actually wrote my second article "A Picture is Worth a Thousand Lives" on this subject. If You & Me doesn't publish it, I'll post it here as I know that we can all relate (as Amanda said) to having glaring symptoms, said to be in (and/or brought on by) our heads. Some docs can see it all in front of them and yet they are blinded by tests.

You have more positive testing than I do, yet your doc is refusing to see the things that are negative, simply because the unreliable test says so. It's maddening. Amanda gave you some great advice. I understand that you live in a rural area, but please get a second opinion. In the meantime, the plaquenil is standard treatment for AI and whether a doc admits to obvious signs of inflammation or not, this would most likely be what they treat you with.

So hang in there, take the plaquenil and search for another rheumy who CAN see the forest for the trees,  whilst you treat your disease with the plaquenil.

Hope that helps a bit.

Grace and peace,
~Andrea

[Velcro]

Well let's see.  If I went out and ran 5 miles right now, I would be fatigued.  My CPR rate would be fine...but you can bet I would be tired so a Doctor telling me that there was no way I could be tired because my CPR rate was ok wouldn't set well with me.

I second the others suggestions to try another Rheumy.  It's great that he's treating you, but you need someone that understands how autoimmune disease effects people without just relying on blood work.

[sassygal]

Cat,

You absolutely are not nuts! Of all the doctors, a rheumatologist should know full well that sjogrens causes fatigue and that there are more symptoms to sjogrens than just dry eyes & mouth and joint/muscle pain. Pain alone can cause fatigue.

As for inflammatory markers, I am one of those mystery patients that have been negative always
for elevated CRP and sedrate even with visible signs of inflammation!

I was being treated for seronegative sjogrens with plaquenil, pilocarpine, restasis, & meloxicam.
Rheumy leaves that clinic and is replaced by new, just out of school NP, who tells me since my labs are normal now (had a high RF for several years but not sjogrens specific labs), that I don't I have sjogrens or any other AI for that matter, and perhaps I needed to see a psychiatrist. I really think they are teaching the new comers in medicine these days to push for that. Also seems to coincide with the DSM 5 criteria for somatization, the new diagnosis dujour'.

It is extremely frustrating and especially difficult in rural areas to find a good doctor. To travel to larger areas in search of a doctor can be daunting. I know for me, being in pain and sick with nausea, fatigue and more often than not, brain fog, driving any distance is a major feat. Having to drive 2-3 hrs. is near to impossible.

Now that you will be starting on Plaquenil perhaps you will gradually see a decrease in some of your symptoms.

Others have given good advice, and please know that you are not alone. Not in your symptoms or the way that doc treated you. Going forward, just be on your toes with this rheumatologist and if possible always take someone with you to your appointments. I find that I am treated differently
(for the better) when my husband is with me. Anytime a doctor suggested my symptoms were psychological, were the times I went alone. Since your PCP was instumental in getting you a diagnosis, perhaps he can work with you regarding the fatigue and other symptom issues?

Wishing you the best!

sassygal   

[eija]

On my first appointment the new rheumy again did my blood work with the same results as discribed above. Then, at my second appointment I had a long talk with him. He told me that my blood results confirmed that I have primary SJS and Grave?s disease. But all that would NOT explain my litany of symptoms, fatigue being the worst of them, because there was no "active inflammation" to be found in my blood (CRP etc.). Further he stated that he thinks that my fatigue is secondary, probably psychologically induced. After that he said he would get me on 400 mg of Plaquenil and strongly suggested I do three hours of cardio exercise every week to help my general health and most of all my psyche.

I'm so sorry for you. I so wish there would be a device that would show them in big bright letters on a screen that "THIS FATIGUE IS NOT CAUSED BY PSYCHOLOGICAL REASONS".

To me, depression was first. And yeah, there was a time when I was depressed. And again. Also, during those times I had trouble with my thyroid numbers. But maybe there was a time when I had "just" depression, without thyroid- or other problems, I'm not sure. Then, I had what my PCP labelled GAD (Generalized Anxiety Disorder). I was (again) put on anti-depressant, and it did help. The next winter I was diagnosed with severe occupational exhaustion and moderate depression. AFTER that, the next summer, I was dx with Sjögrens. Until then, at least for two years, I had been complaining about fatigue that was overwhelming, as well as brain fog.

Probably because of my history, they still think my fatigue is due to the depression. I'm saying, IF there is any depression left it's due to the fatique! Nobody listens to me there, they just keep wondering why I don't respond to the anti-depressants. Well, my new shrink (who I - to put it nicely - don't like a bit) kind of agreed and is sending me to a sleep study, so maybe that's a start.

My problem is, that they say often the neurological problems with Sjs come before other symptoms - so WHAT IF that was the case with my depressions and the GAD? Nobody answers that question to me. Would I be treated differently? Like maybe steroids instead of a suitcase-ful of antidepressants and therapy I don't want?

Also, my rheumy tells me to excercise. Says that it would be important also because of my fibromyalgia. Yeah, I believe it would. Just that I don't have the "spoons" for that, so swiping the stable isle and walking the grocery store mileage gets to serve as my excercise.

Anyway, I understand your frustration and confusion. First hand. I'm sad that I do and I'm sad that you too are in that situation. And I'm sad that ANYONE has to be in that situation

Sorry the feisty rant. Just that my life is a mess because of this very issue...

[SjoGirl]

Cat you've gotten good advice here. Makes me crazy when doc's say it's all in your head like you are crazy.

For one, the stress if living with undiagnosed disease is very significant and fatiguing in and of itself. Now would they say to someone in the same boat who was eventually diagnosed with cancer it's all in your head? Not on your life. Second living with chronic illness takes a toll on the body, day and and day out. If someone had Parkinson's or diabetes and was fatigued would they say it's all in your head? I doubt it.

Not sure this doc is salvageable, but if you believe you can approach him in a way that won't shut him off you might take a book about SJS or article that speaks about fatigue and ask his thoughts about it. You might ask something like, is this article in The Moisture Seekers, published by the Sjogren's Foundation, inaccurate? If he continues to insist the fatigue is not part of the disease and is all in your head, I'd high tail it out of there and find a new doc.

[LucyD]

MirkeshCat you are NOT nuts. Your doctor is. I am seronegative but have many symptoms of Sjogren's including dry eyes, dry mouth, chronic sinus infections with five sinus surgeries, very bad muscle and tendon pain with visible swelling, inflammation and redness that my rheumy finds every visit, horrible fatigue, and rashes. She has diagnosed me with a definite Sjogren's.

I have a good friend who is a physician. He even said that doctors coming out of medical school now in general do not listen to their patients, and are not skilled at diagnosing by listening to their patients. Instead they rely on laboratory tests alone. They are not good diagnosticians and they are very lousy doctors.

Do not doubt yourself and your symptoms and do not let this doctor make you feel bad.
I hope you can find another doctor who will listen to you.

It has taken me about 20 years since my pain, fatigue, and all of the other symptoms began to finally get a diagnosis and now it all makes sense.

I could go to a new, young rheumy tomorrow and based on my blood tests, he could tell me I do not have Sjogren's and this is all in my head.

I do have some other general blood tests that can be indicative of autoimmune disease, but my Sjogren's tests, ANA, CRP are negative.

Good luck. Trust yourself. Discount this doc just like he is discounting you!

[susanep]

Yes, you have to be your own best advocate, because you can't believe all doctors these days. I have even had the sleep study, and do have severe sleep apnea, and use a cpap, but I still have the extreme fatigue due to sjogren's and lupus.

susanep

[Raesunshine]

You are not "nuts".  You are not alone.

I have very similar symptoms and have been told many times it was psychological.  I did the antidepressants and when they did not work referred me to a psychiatrist.  He actually discharged me and said nothing was wrong mentally with me.  Doctors still try to send me back.

Good Luck.  I have not seen a rheumy yet but am looking forward to it. (Yes and No)

Rae

[MirkeshCat]

Hello folks!

Thank you all so very much for your understanding and your wonderfully encouraging replies! I was really starting to doubt myself after the visit to that new rheumy. Sad as it sounds, I may have to re-start my "quest" to find a good rheumy again.

Thanks to you all again!

Greetings from Germany!

[quietdynamics]

MirkeshCat,
Being in a rural location is indeed difficult when trying to find a specialist.
In fact even in cities sometimes finding a 'good match' can be difficult as well.

Your Rheum has done tests, given you a DX and started you on Plaqueninel.
Plaquinel takes time to work ...up to 6month for full effects. However, often patients feel relief earlier, so hopefully building up to the 6 months does get better.

Having Graves will involves management by a Endocrinologist. The symptoms overlap those of Sjogrens...so muddy waters. http://www.mayoclinic.com/health/graves-disease/DS00181/DSECTION=symptoms

You posted that you gave your Dr. a number of symptoms and we do not know all that was said. He did take time to talk you.

Hopefully the fatigue will diminish with plaquinel.
However, if you look at posts there are lifestyle changes patients can make to help themselves and one of them is indeed exercise.  But, it is not working out with weights necessarily...a simply 15-20 minute walk every day would give you 2.5 hours of some cardio...you can look up walking on the net. It also is a bit of "me" time...which is healthy.
Having a series of symptom on a daily basis does have to affect us emotionally ---> psychologically ---> depression.
There are studies of lowered serotonin in Sjogrens and AI patients. Exercise raises serotonin.
So your Rhuem was not totally off the mark.

Sometimes when patients hear the words depression and psychological, they think of those term as a defect in themselves (personality), rather than a biological symptom of their chronic illness.  And both can also be symptoms of SJS / Graves combo or result of one.

Hope this helps you.

I would think about what other things your Dr. discussed, mentioned during the visit and of course you need to keep him while you do search for another, should you chose to do so.

Following-up on Graves will be important.

[katie1111]

I vividly remember when I was searching for a diagnosis hearing things from the docs such as, "What do you want me to do?"  Whatever you have is beyond my expertise (at least he was honest), etc. but the one that really got me was "You need to go for counseling."  I said to her, "No, I don't need counseling, I need a diagnosis."  Her response was, "Then you need counseling to deal with the fact you don't have a diagnosis."

What helped me the most was my daughter's encouragement.  She said, "Mom, we can tell something is wrong.  Don't give up.

Listen to your body and keep searching for someone who will join you in the search.

[LucyD]

Yes, what encouraged me to continue my quest to find out what was wrong with me was the validation by friends a family members who kept telling me I needed to see another doctor and find out what was wrong because something WAS wrong when I tried to keep acting like I was just fine but I couldn't walk from the pain or I had to sleep a lot or I kept getting sinus infections, eyes crusted shut in morning and watering during day, face kept getting red, etc.

I hope the Plaquenil helps. I am still on 400 mg, but it doesn't seem to be working as well. Now starting on methotrexate.

Good luck.
Believe in yourself.

[slccom]

Weird as it sounds, eyes watering can also be a sign of dry eye. Don't let anyone say that therefore you don't have Sjogren's.

Maybe someone on here could suggest a good rheumy where you are.

Sharon