Doctors' Indifference

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catspain
New Member


Date Joined Apr 2011
Total Posts : 1
   Posted 4/20/2011 2:13 PM (GMT -6)   
I am a new member to this website and so far have found it to be a wonderful place to see that I am not the only one having the problems with doctors like I have.  I just set up an appointment to see a new Rheumatologist for the fourth time.  The first one I ever saw was just crazy.  The second one was from a highly regarded teaching hospital here in North Carolina.  He is supposedly the best one they have for lupus at this hospital.  After going to him for over four years, the straw that broke the camels back was about the fourth time that he told me my pain in my knees and hands was because I was getting older (I was 44 at the time).  My mother in her mid-70's gets around better than I do at times.  After contacting the head of Rheumatology at the hospital and complaining about that I started to see another one at the same hospital, who by the way works in the Pain Clinic, only to find out that he is just as bad if not worse than the other doctor.  He seems to think all of the pain that I am having in my wrists, hands, knees and feet all come from stress.  He says I need to do water aerobics which make my hands and wrists hurt for days afterwards and that I need to speak with a phsyciatrist which I cannot afford.  Everything my family practice doctor says or prescribes for me is wrong.  She put me on antidepressants and you would have thought that she was trying to kill me.  My thyroid levels are a little low so she put me on a low dose of thyroid meds and he said that was just miniscule and then the last visit he told me to stop taking, now you really have to listen to this, my ibuprofen and take tylenol instead because my prednisone would help any of the pain, which it doesn't take care of all of it and then told me to decrease my prednisone! He refuses to prescribe any pain meds like I'm there just for that like some druggy or something.  Anytime I get any pain meds for any other problems like when I sprained my ankle, i hoard them like they are gold and only take them when I cannot stand it anymore.  Both he and the last Dr. don't seem to think that the pain that I am having is Lupus related because I don't have any swelling of the joints.  Well, if it is not that, then they need to find out where it is coming from!  I am seriously thinking of going to a lawyer to see if non-treatment is the same as malpractice.  If so, I am thinking seriously of sueing. 
 
I am just so glad to have found a place like this so that I can vent and see that I am not the only one in this boat of Doctor Indifference.

Littlesrebel
Regular Member


Date Joined Jul 2009
Total Posts : 163
   Posted 4/20/2011 2:32 PM (GMT -6)   
If two doctor confir that it's Lupus, then you need to see the Rhuemy and pain management Dr. Psych med's can help you sleep better through the pain at night.
Fibromyalgia, SLE Lupus,chronic myofacia pain syndrome, cerivcalgia, malaise, fatigue, migraines, and anxiety.

ReadDeeply
New Member


Date Joined Apr 2011
Total Posts : 13
   Posted 4/26/2011 12:30 AM (GMT -6)   
Hey Catspain,
I am new also, really new, like in the past hour. Your post is like a salve to my wounded sense of patient-hood! I know exactly what you mean by bad doctors. I've had one who spent more time examining her laptop, and barely could stand to take her nose out of it long enough to address me. Anytime I'd try to relay info about my symptoms, she would literally "shh" me. She seemed always angry and annoyed and it got to where there was no dr./patient relationship at all, I couldn't talk to her and I felt like I was just there to fill her bank account. She referred me to a neurologist who kept getting me mixed up with another patient, insisting he'd given me a sample of some med., and when I would reply that he did not, he'd say "well, you do have memory problems..." (how would a memory problem make a med. sample disappear from my possession?). One day he just kept running from exam room to exam room, obviously painfully overbooked, and it was a completely wasted visit. He was so lost I was embarrassed for him. He'd forget that he'd ordered blood tests, forget why. With 90% polyneuropathy, and a host of other diseases, him I don't need!

But keep the faith. It has taken me 12 years, but I have finally found a primary dr. that I like (unless of course he changes like the wind, which, sadly, has been known to happen). Don't be afraid to switch doctors until you find one you can work with. I've learned from experience that sticking with a bad one is just a waste of time-- they're NOT going to change and they're not going to get better. Eventually you will find one that acts like a sensible human being, though it may take a while.

NikiS
Regular Member


Date Joined Mar 2011
Total Posts : 129
   Posted 4/26/2011 2:19 PM (GMT -6)   
Dear Catspain and ReadDeeply, I really feel for both of you. I am working on my doctorate right now and can hardly type, muchless do water aerobics! That doctor is crazy. We have a bunch of walking scientists today literally "practicing" medicine on us guinea pigs... (sad to say)... but I plan to write a book one day and I would like to tell the whole world what I went through with these doctors--constantly judging us and never dealing with the pain and if you should (heaven forbid) ask them to ease the pain when it gets so intolerable you think you will go mad--they do treat you like you are a druggy (which is why I completely stopped asking for pain relief). I am more worried at the moment that they get to the bottom of the situation and put me on steroids which seem to help me more (although as you mentioned it does not completely relieve the pain)... but for me, the steroids are like gold as my doctor doesn't even want to give me those! (he finally broke down last night for a 7 day supply of 10 mg prednisone after a couple of months of begging him!) I see my rheumy for the 1st time on May 2nd and very nervous. If he is like all these other doctors I've seen, he won't give me time to tell him anything, will flit me out the door within minutes and try to throw a "patch answer" at me instead of helping me resolve the problem only to tell me to come back in 2 or 3 months! That is all I have gotten for months now (or sent to another doctor and another doctor and another.... yeah... and another....) and no one with any answers--just "your situation is rather complicated and over my level of expertise"... so if none of these doctors is competent--who does one turn to with these "complicated" sicknesses? there should be some place? I would love to start a clinic just for people that "can't get answers" to go to, or write a book to make the public aware, or go on the news with my story--or just something so that so many other people don't continue to suffer the way you and I do. In a country as rich and intelligent and resourceful as ours, I simply see no excuse for what we are all going through. It is pure downright ignorance, and every doctor I see tells me "well, we know very little about the immune system!"  So if they readily admit that, can they not readily admit that maybe we are also telling the truth about what we are going through and they need to believe us completely and take us seriously?  It is unreal to me what is going on with all this and SO many people affected!!!  I have you all in my heart and prayers... very much for all who are suffering, in pain, mentally in anguish and torment from the way doctors have talked to you, emotionally losing hope because no one treats you with the respect and dignity that you highly deserve. I see you as very special individuals, strong individuals, courageous ones, who will pave the way one day for those who come after us. Don't give up hope. Let's "fight" this system with knowledge, intelligence, and science until things change for all of us. Your friend, Nicki

lucysgd
Veteran Member


Date Joined Jun 2008
Total Posts : 675
   Posted 4/26/2011 5:57 PM (GMT -6)   
Well said, NikiS!!!  .....I think I heard a round of applause yeah
Thank you for giving voice to what so many of us feel and need others to hear!
 
Lucy

NikiS
Regular Member


Date Joined Mar 2011
Total Posts : 129
   Posted 4/26/2011 8:13 PM (GMT -6)   
Tfofd, my fam doc kept asking me too if I was depressed--the past couple times! I told him--what do you think? I can't get out of bed, can't clean my own house, care for my own son, how would you feel? And turned it back on him! I told him I am not "depressed" but I am "depressed!" I am frustrated that I am having serious physical difficulties and no one is giving me answers or taking me seriously. And yes, there are those who highly abuse the system and that is not our fault or our problem. Each person deserves respect as a person and patient and if someone is abusing, I would think it would then become apparent. Why take it out on everyone? Yet, I also see the fear these doctors have of losing their licenses after they have worked for years for them. So what is the answer? The whole system is "kaput" as far as I am concerned. It is not fair to doctors or patients. It is run by insurance agents who have one thing on their minds--MONEY! and that I think is the real issue...  so I try to keep that in mind too when I meet doctors that are less than gracious to me. I am so sorry you are going through all this. It is terribly wrong. I mean it, I am going to do something about this one day when I am back up and strong--and I have faith that day will come and also for all of you too. I will not lay down and allow my life to be treated as if it does not count for anything. God created me and you in HIS IMAGE. That is a powerful statement to me--and anyone that does not treat us as children of the highest king of kings needs to relook at their own lives--not at us. Have compassion and forgiveness for these doctors. That is what I am struggling in my own heart to have. They are also human with human fears that we also have. I believe things can and will get better but we will have to "fight" for this with our minds, hearts, and compassion. Nicki

panther fern
Regular Member


Date Joined Feb 2011
Total Posts : 163
   Posted 4/28/2011 2:59 AM (GMT -6)   
Being Chronically ill we all are going to tend to have some form of depression at times. Some may be chemical and some situational. I over the past pretty much 18 years have had guilt about being sick. it took a long time to get diagnosed and i have three kids who now are 19, 18 and 16. I served in the persian gulf and that is where i started having symptoms but i didn't think much of it, then having kids back to back of course i was fatigued. I was very fortunate to move back to my home town where i had my family doctor who had known me since birth (seriously) so he knew my personality... i thought i was a hypochondriac. my blood test were normal ...i would keep track of symptoms. and he put me on a med and said if it helped i had an auto immune problem. i stayed on it for 3 months to try it... i noticed with in two weeks i was feeling better. but the med methotrexate is wicked on your liver. my kids were young so i thought ok i will go off this med and just deal. and i did for quite some time. with no real dx. then i had a flare and it showed in blood work and the rest is history. i don't live in that state any more but i was particular in drs when i moved to CO. I have several my family dr., my rheumy, my gastro, my pulmonary,and a physical therapist and a massage person and now having more problems and symptoms i need to pick a neurologist. not to mention only go to one pharmacy and make sure you think that the place you go is very competent.
my point is I make sure my doctors keep each other informed. I only get pain meds from one. I wish it was the olden days when i could go back to just my family dr. that knew me so well and just have one dr. I now feel like i need a secretary. Guys vote with your feet. see if there is a local support group and find who people around you think rocks. or get a list from your ins and write every single one down and call each office and get a feel for which one suits you best... it is sad that you have to be your own patient advocate these days. young drs. don't want to do narcotics, which makes sense in the case of an inflammatory disease except they can do something for pain that isn't narc. but you need to go to your appointment with a list. of all your concerns. make sure they get answered... if you have an idea run it by them.believe me.. I have. i am educated and worked as a dental hygienist so i do have some pharmacology knowledge so i do know and have research on my own what things i was willing to try. I am blessed to have finally found a group of drs. that i truly believe care about my quality of life. I am not saying that they don't get frustrated sometimes ..because i am a difficult case but i am grateful that i am in the United States where i do have some choice and there is medical care. I would hate to live in a country with socialized medicine because having a disease with no cure..well that would mean... no treatment... and worse than that live in a place like many countries in africa, medicine... heck you can't even get clean water... For whatever reason God's grace put me here. Our situations are not fun, not ideal, but we have the freedom to wish each other good health, to pray for each other in any religion we choose, and we can try to encourage each other. It is terribly sad that Dr.s get so afraid to treat in fear of a lawsuit because they have huge college loans to pay, and many want to get something for nothing because lawyers promote it and judges allow it, It boils down to integrity. People do not understand the meaning of it anymore, they don't even think it is important to teach it to their kids. Lying is even acceptable, we have had presidents that have admitted to smoking pot. seems mild right, wrong it was against the law. We as a nation need to start holding people to higher standards. The whole birth certificate game... you shouldn't even be able to put your name on a ballet with out producing it... political games on all sides and Americans accept it and that is the best we can do... Sad. Honor, dignity, Truth, I will never understand why it is acceptable to have overcrowded prisons 49,000 a year per inmate we let out early due to space. that is a persons income a year. criminals have more rights than innocent people. Our country needs more than prayer it needs a spanking. lol a big ol' wake up call you would have thought 9-11 would have done that. well i am obviously off subject and on a soap box.
Wishing you well ... better mental and physical health

NikiS
Regular Member


Date Joined Mar 2011
Total Posts : 129
   Posted 4/28/2011 7:39 AM (GMT -6)   
thank you Panther Fern! I am really sore today and swollen. I hear you and appreciate every word you wrote. Agree with you on integrity. that's where it all starts--in each of us. then doctors would trust us more if they knew each of us was being honest with them. so said its not always the case--and yeah--these docs pay a mint for school. I studied pre-med before going for my MBA (graduated in 3 years too--high honors)... I understand the immunology and pathology of this disease (of what they are explaining to us at least) but think the real issue is they still are so limited in what we do know about the immune system. I wish you much luck!!! Nicki
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