Am I the only one?

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New Member

Date Joined Dec 2006
Total Posts : 2
   Posted 5/19/2008 3:03 PM (GMT -6)   
Am I? The only one who ends their Dr's visits in tears? I don't believe I should have to fight and argue about why I need the medications, but I still have do. Does everyone else's visits just go peachy? Do you guys just smile and nod? Accept the fact that your latest symptoms you just spoke about didn't even get assessed or at least acknowledged? Do you just watch your medicine cut in half and unexplained ones tossed in? I don't. I cant. I'll never believe I should spend my life in pain and in bed for it to be extended longer even if that so I can die from my Lupus not from medications I took for a happier more active shorter life. I dont understand.

Veteran Member

Date Joined Jan 2005
Total Posts : 8616
   Posted 5/19/2008 3:09 PM (GMT -6)   
Welcome to the forum Drive!!!

You've found a really supportive group of Lupans!!

YES! Lots of us have huge issues with doctor visits. I always spend sufficient time prior to doctor visits to write out a very specific sheet of info to hand to the doctor. There is a post about it in "Lupus Resources" (link at the bottom of my signature). It is very helpful with some doctors. Even if your doc isn't one of them, it really gets you ready for your appointment. But really, if I write my questions out and hand him/her a copy of the list, I don't lose my nerve and end up sitting there nodding and going blank.

We really need to make the most out of our short visits. I hope you get lots of responses to your question.


In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Inflammatory Arthritis, Diverticulosis, (recent dx - Sjogrens, Crohn’s 4/08)

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator

Regular Member

Date Joined Mar 2008
Total Posts : 60
   Posted 5/19/2008 3:10 PM (GMT -6)   
I am one of the lucky ones who has a great doctor, but I have heard many stories just like yours. You're so right, it shouldn't be like that. Do you have the option of changing doctors, or does your insurance have you stuck with this one? If possible, I would not hesitate to look for a new doctor and keep trying new ones until you find the right one. No one should have to be stuck with a doctor who won't listen or answer your questions.
~ Bee

God is the strength of my heart! - Psalm 73:26

New Member

Date Joined Dec 2006
Total Posts : 2
   Posted 5/19/2008 3:31 PM (GMT -6)   
I currently dont have have PCP/Rheumy because I was so diffcult for the last one. I would refuse to go to appointments because all we did was fight about my prednisone and his view on my life. So right now I just see the specialist who I asked for referals too and its the same thing every visit with them.

Regular Member

Date Joined Mar 2008
Total Posts : 60
   Posted 5/19/2008 4:15 PM (GMT -6)   
What kind of specialist is the doctor you're seeing now?

Rosie's suggestion is good, too, about writing things down. I need to try that too!
~ Bee

God is the strength of my heart! - Psalm 73:26

Veteran Member

Date Joined Dec 2007
Total Posts : 2113
   Posted 5/19/2008 6:18 PM (GMT -6)   
I love my rhuemy but right now I am so frustrated with her that I am haveing imagineary conversations with her in which I tell her off. She keeps telling me the side effects of my medication can't possibly be from the medication even though they are well documented effects of that drug.

Veteran Member

Date Joined Sep 2005
Total Posts : 2573
   Posted 5/19/2008 8:04 PM (GMT -6)   
I used to end my visits that way, but I decided that if a doctor wouldn't listen and did things that made me worse they were fired and I would find a new doctor. I am still looking for a good neurologist. I fired 4 in 2 years and haven't seen one in about a year. The doctor works for you. Remember that when you walk into the office. Make it clear you will not be talked to like a child/idiot and you will not have symptoms ignored.
Sjkly, take pharmacy printed documentation of the side effects of the meds to the doctor- often they are unaware of side effects or even interactions. That is why we have pharmacists.
Dx:fibromyalgia 2002, systematic lupus 2005- definate CNS involvement dxed late 2005, psoriasis 2006, rheumatoid arthritis 2006, PTSD 2007, multiple allergies 2005, migraine, compression fractures T11 & T12, Sjögren's, damaged periphrial nerves 2007,
Tx: plaquenil, Enbrel, Darvocet, Singulair, Flexeril, Baby Asprin, Imuran, Procardia, Prilosec

Veteran Member

Date Joined Feb 2003
Total Posts : 5514
   Posted 5/19/2008 8:20 PM (GMT -6)   
Hi Drive,
I'm another one with great doctors as of right now, but I have been through 3 rheumies since 2000.  I had issues like yours, so I fired them. 
You have to get very knowledgeable about your lupus.  To the point where you can communicate with your doctors on their level.  If you come to your visits with confidence, knowledge and a purpose, you'll likely get more out of your visits.  That has been my experience anyway.  Whenever I've had extended or quick ER visits, I have been able to talk with the doctors like a doctor!!  It has blown my family away hearing me behind the curtains.  I get very fast attention and no BS.  It takes time to learn everything about lupus (I don't think we'll ever know it all!!) in order to communicate this way, but it does work.  If you can talk and understand like a doctor, you'll get more respect.  It's a horrible truth. 
Go in to your appointments with the attitude of "I'm telling you what is up and what I want and need.  I'm not asking you."  This is your body, not theirs.  More respect is needed for sure.  I"m sorry you're having so much trouble.
I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in,to be content. Phillipians 4:11-13

34 years old. Diagnosed with lupus in 2000. Fibromyalgia, anti-phospholipid syndrome(APS)(stroke),Sjogren's, Raynaud's, seizure disorder-(miraclulously disappeared!), Libman Sach's Endocarditis, vasculitis, sacroiliitis, arthritis (neck) . Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, didrocal, Cozaar, calcium, Cykolokapron, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus

Regular Member

Date Joined Mar 2008
Total Posts : 89
   Posted 5/19/2008 11:23 PM (GMT -6)   
You know.. I think many of us have had problems with doctors at one time or another but I let them know up front what I know about my body, that I am an educated person and that I need to know everything about my situation. I do feel that we often have to be a bit more aggressive when it comes to health care. However, knowing this about me, my doc is more apt to explain things to me before I ask about it.

If you have certain expectations of what you expect to receive in the way of care, and those expectations are not being met, you have every right to voice or your feelings and if they are still not met after that then it is time to look for a new doc. I am so sorry you are having a hard time with your doctor.


Veteran Member

Date Joined Dec 2005
Total Posts : 1950
   Posted 5/20/2008 12:53 AM (GMT -6)   
Hi drive--
I went through that for 13 years with obvious physical symptoms. There was absolutely NO excuse for the lack of treatment I received, the dismissals, the insulting comments that I was imagining things or it was all in my mind. I actually just gave up, and it had disasterous results. I have permanent damage now and disfigurement that I can never correct now. I had great insurance, and it made no difference. I've goten better care on medicare.

I would definitely not give up and find a good rheumie in your area. If you feel you are sick, you probably are, and with a little education, you probably know what is wrong, because you feel it. You need to find a doctor that will do proper and sensitive testing, treat you based on symptoms, and be caring enough to appreciate your feelings and desires about how you want to live your life. I'm in terrible chronic pain and often have to argue for meds even though I have had two neck surgeries that they know caused problems and pain and other untreated problems. I just tell them flat out that I cant live with it, that I want to have a life, at least for a while, and I want to be out of pain. If your doctors don't respond, then you need new ones. You also need to communicate that you don't like having to beg for medication that you need to be comfortable and live. That it is unfair. They will likely argue that they are trying to help you and explain why they may sometimes say no, and you have to be open to that. Everyone deserves liberal vacations from pain and symptoms and while being pain free may result in addiction, which is undesireable and may cause more problems down the road, there are many meds that are non addicting, and you can do a two week or month on, two weeks off, type thing with pain meds. Sometimes addiction is unavoidable, but even on fentanyl, I quit it, it was uncomfortable, but neither dangerous for me nor something I couldn't deal with on my own. Another option would have been to go into a hospital for a short stay to have them wean me off more comfortably and under medical supervision.

I hope you fight to get what you need. You are right, you deserve to have some dignity, to not have to fight to get the medicine you need, get full explanations of new meds and why they are prescribing them, and to have your condition explained to you in detail. I'm sure you can find better docs. Just remember that just because a doctor is famous or works at a big medical center, or is top in his field, does not mean he or she is the right doctor for you. My best docs have been in private practice outside the politics of a large medical center, though large medical centers like Mayo can be fantastic too, my regular care will come from my local rheumie in his little modest office. He himself has an autoimmune condition, so he understands. Older docs can be good too because they have usualy been sick before, sometimes women doctors are good for women, other times awful. It all just depends. But use your second and third and fourth opinions to find another doctor. I went to four endos and am on my fifth.

I wish the best for you.
Love, Marji
--Sometimes I think the surest sign that intelligent life exists elsewhere in the universe is that none of it has tried to contact us. Bill Watterson (1958-) cartoonist "Calvin and Hobbes"
Ills--Sjogrens-Lupus-like AI Disease, Hashis, Vitiligo, spinal stenosis/fusion with plate, salivary/lymphectomies, Diabetes, NAFLD, COPD, RLS, neuropathy, trigonitis, hystero, diffuse brain atrophy, GI nightmare
Meds--Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, Estradiol patch, Prosed, Detrol, Klonopin, Ultram, Vicodin, Restasis, Albuterol, steroid injections and pred prn

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