View Full Version : frustrating visit with my Rheumy
04-04-2008, 02:39 PM
Hello everyone..I introduced myself in the "introduce yourself forum" last week. I have been mostly in my bed for the past month-with some ventures when I have a burst of energy-out with friends to the dinner, or doing things with my children, or studying for my Phd work. I am on Temporary disability and in the worst flare ever. I am in constant pain, joints, muscles, fevers, infection is raging in my mouth(um..yuck), no energy past a few minutes, dry mouth..like a big desert in there..chest pain, a bout of pericarditis...a few little partial seizures... tripping on my feet when I do walk, cramping in my feet when I am still, headaches coming back, losing weight(I feel like I should be gaining a million pounds with how I do nothing!)......but I am writing for support...I am writing because I sit here confused by my doctor..she treats me on one hand..confuses me on another....
I just had a terribly frustrating visit with my rhuemmy. It was the most confusing thing ever. She starting out talking about psychological stuff (it's all in in your head-- is all I heard)..this actually MAKES me depressed, because in the meantime she has been treating me with medication for lupus and telling me on other visits the only reason I don't have the dx is b/c the blood work has not shown. Then after the physical examination...she tells me I have a mouth infection common for immuniosuppressed people, I have a sore on my head to be biopsied b/c it looks like discoid lupus, and I have to get an EMG b/c my muscles are weak and cramping and she suspects muscle disease, but it is likely part of the connective tissue disease...so why is she saying at the start things about "it may be psychological".. On top of all this I know it is not in my head!!! I am a relatively psychologically sound person, for goodness sake! :? EXCEPT for being told I am not really sick!! Seriously, of course it adds undue stress. Actually, I am a therapist by profession. I am right now on short term disability, I am working on my PhD in grad school, and thank God for that, because it gives me something to do! I know this illness is confusing. And I get very frustrated when my own doctor who treats me for it, puts me on disability, restricts my work hours, sends me for tests, and talks about going on to a "stronger medication to treat the disease" also talks about not being sure if I have a disease!!
Thank you for hearing me vent here. I just need to hear from some others who have been through it. I understand much about the illness. I know one of the reasons I don't "have" the diagnosis is because the blood hasn't shown the definitive "positive" result..despite all my clincial symptoms and debilitation. I did read a book (the name I don't have) recently which states that the diagnostic critrera for lupus changed in 1998 to 4 out of the 11 critrea and it is no longer needed that the blood work be positive it the other criteria are met (b/c sometimes the blood -like ANA can go back to not showing after treatment...and in my cause my doc has been treating me on inflammatory and plaquinil for over a year)...does anyone know what I am talking about here?? Also, my Rhuemy seems to treat me well...I am wondering though if based on my hx and experiences, if I should seek a specialist in lupus. This book states the importance of this..and the way I have been confused by her conflicting statements..I am thinking a consultation with a lupus specialist may be a plus. Right now she has given me the Undifferentiated Connective Tissue Disease dx. I have always been fine with that. But the way I feel now...sort of trapped in bed...in pain and, yes, a little hopeless, I suppose I may be looking for hope elsewhere!
thanks for reading this self purge!!! :lol:
04-05-2008, 11:51 AM
I completely understand your frustration. On the one hand, she has clinical proof that there is something going on and on the other hand, she wants to dismiss this by saying that it is all in your head. Since you know, for a fact, that it is not in your head, you are well within your rights to tell her that you never want to hear her say that to you again. Your symptoms are real, you want her to treat them!!
Now, at the risk of being a "devil's advocate". I am going to go out on a limb and say that she might be trying to tell you that your stress level is contributing to the aggressiveness of your flare. We all know how detrimental stress can be to our disease and that stress is our "Worst" enemy. Stress can make us flare more often, it can make our flares more egregious and can make our flares last longer! It is imperative that we find ways to relieve our stress (I know, much easier said than done - but no less important). If we do not, we do ourselves much more harm! Stress is caustic to Lupus patients. So, the next time she says that it is all in your head, you can also ask her if she means to say that she thinks that you are under stress. If so, ask her to give you a referral to a counselor, therapist or a stress clinic - because doing so is also treating your lupus. If she is not willing to do these things for you, then let her know that her statements are causing you extreme stress and that, for the sake of your health, she needs to knock it the @#!! off!!
oops...sorry. I got a little perturbed at her :?
Do not feel that you need to apologize for venting here. We are here for you and venting is necessary in order to alleviate some of your stress. So, vent away!!
Peace and Blessings
04-05-2008, 03:42 PM
thanks for this response. I understand what you are saying about stress. And stress absolutely contributes. My doctor has been treating my symtptoms and that is why I get confused. She speaks of the disease and then speaks of stress. She puts me on short term disability and tells me to change my lifestye and I completly agree my lifestyle contributed to this flare. As far as counseling goes, I am a therapist and am all for therapy if needed and actually do go to counseling in the area of maintaining lower levels of stress,ect. :) So you are right on! My conflict and venting was sort of in the area of her saying at the start of the session things about "exhaustion and psychological fatigue" and by the end saying things about "disease and stuff"...and she has been treating me all along...It's the mixed signals that gets to me more than ever. For the past few weeks..my stress level is low..but my flare level is very high! :(
04-06-2008, 01:04 AM
My experiance has been that when I am going through a stressful event, I'm great! I'm wonderful...cool smooth...well adjusted...get the job done! You know what ever it takes to get things where they should be.
As soon as the situation is dealt with...then WHAM! I fall a part. Mouth sores, cold sores, tired, head cold. My body revolts on me.
Hope you're feeling better....I'm beginning to think that rhuemy's take mini courses in how to bedazzle baffle and confuse you patient.
04-06-2008, 09:29 AM
WOW - now I want to vent. :lol: I get so angry when physicians start with the "It's all in your head" stuff. Perhaps you should respond with, "Well, if you really believe this is all in my head, then wouldn't it be malpractice for you to be treating me with pharmaceutical drugs like plaquenil, that can damage my retina over time? I mean, if it is really in my head, then these drugs are not at all necessary and you should have referred me instead for psychiatric evaluation." OK, so maybe I get a little carried away sometimes. :)
I am speaking from experience. My mother was told it was all in her head 30 days before she died. She WAS sent for psychiatric evaluation. We now know that she passed from an unusually rare presentation of vasular disease, probably autoimmune in nature. Perhaps even lupus related. Her death was horribly painful. I share this not to scare you, but to empower you. If you know you are in your right mind (and I have no doubt you are) then don't let ANYONE convince you otherwise. You know your body better than any doctor ever will. Keep fighting for answers.
OK. My tirade is over for now.
04-06-2008, 03:57 PM
Thank you..all the feedback has been so helpful..(even the frightening one!) na..not really frightening....I am sorry about your mother. It is true, many things can happen with this illness..and those like it! The comment made about the periods of stress...and the BAMM after the stress ends, it's funny, I was thinking of that today before I signed on. I was thinking "why do I feel so terrible for the last 4 weeks, when I am not working and finally DO have time to breath"..and I realized the few other times I have had flares almost this bad it has been right after pushing myself for months and months...trudging along! I am getting a lot of validation here! Even this mouth infection she is treating me for. She told me it is quite common for cases like this. Well..that was vauge...so I had to look it up! When I did..it said for HIV, Lupus and other immunosuppressed individuals. (I thought she may have meant for stressed out people)..... finally, yea...I kind of wish therapy, a psych med, or a nice warm bath and some calgon would "take this all away"...
Today i actually spent the day at the book store with my daughter and tried really hard not to roll my eyes, or complain....joints didn't hurt until after 1pm...the fatigue set in about then too.... it was a little bit of progress I suppose. :oops:
04-07-2008, 08:38 AM
Any progress is good progress. Yes, mouth sores are common in immune-suppressed individuals and we Lupies get them quite often :?
Now that you are aware of your stress and how it affects you and how it makes you crash afterwards, you can now make some conscious choices about avoiding stress, how to alleviate your stress and what steps to take to lessen the "crash" after stressful events..............
Don't forget - we are here to help you and we all understand what you are going through!
Peace and Blessings
04-07-2008, 06:13 PM
I can definitely empathize with you about doctors telling you it's in your head, etc. It's very discouraging. With my experience, I've had about 75% of the doctors I have seen tell me that it might be in my head.
At least, on the bright side, your current doctor has treated you. It's bad when they tell you it's in your head and they do nothing but give you a referral to a psychiatrist. Have you noticed within the past year if the plaquenil has helped you any? I have read, too, that your ANA can show negative if you are on steroid therapy, that's what it says on my lab results every time.
With the positive/negative test results and diagnosis, I have not once had any abnormal blood tests relating to anything autoimmune. He first gave me a diagnosis of UCTD, too, but now my rheumy believes that I do have SLE, and that's what I have been sucessfully treated for. I've read stories about patients with major organ involvement SLE, yet they never had a positive ANA.
I personally think that it might be beneficial to perhaps visit a lupus specialist and see their opinion on your situation. I would, though, keep your current rheumy, because despite how she is a bit conflicting, it's good that she is treating you, etc. I guess I would be hesistant in your case to get rid of her as your rheumy, because what if you go to find a new rheumy, yet they are worse, know what I mean? I do think maybe you should tell her that if she thinks it's in your head, then why is she putting you on all these drugs and giving you restrictions and tests? I can't see her logic in telling you it's in your head. But please, remember that it is NOT in your head, don't let any doctor make you doubt yourself like that.
Also, I wanted to add, good for you for working towards your PhD despite what you are going through. You are truly an inspiration for me!
04-08-2008, 09:14 PM
wow..lots of helpful feedback here. It was interesting to hear there is someone else who also hasn't seen much by way of the bloodwork..but has gotten the .dx and treatment. I sort of agree with much of the feedback and validation I am getting here. I do not want to leave my current rheummy, as I believe she is treating me according to what I have "educated" myself about. I suppose it is natural to feel frustrated with the confusing messages. I went to my Neurologist-who found my PN got much worse in my right foot today-he believes it is due to vasculits. He plans to consult with my Rheummy and most likely do a nerve biopsy and/or just call it without the test. He said He is quite sure it is the connective tissue disease causing the PN and tied that in the vasculitis. Then I have this head sore to be biopsied. I kind of feel as if I am getting closer to a diagnosis. It is good to know that sometimes there are cases where for one reason or another the blood doesn't show as positive. I have read that somewhere too..but I have read so much....!!! My sister who has had some kind of UCTD since age 17 (she has actually had the Lupus dx given and taken back!!) never had any positive blood work. Her clinical symptoms have been less significant and times of remission much longer (onset much earlier..)
I noticed a major help from plaquinil- it took a good few months to start working though..like maybe 2 months! Also- and this is KEY for me- for some strange reason I can't take the generic brand. I never buy into that kind of thing. But with planquinil..when I do, my joint pain comes back in a relentless manner. Now my Rheummy and I both remember this and I have to pay an extra 10 to my co-pay to get the brand name. Of course now I am in a big fat flare..and if feels like nothing works!!!
thanks again.... chrsitine :P