Am I the only person that goes to the doctor and try to explain the things thats going on with your body and mind.You know it has everything to do with the lupus and the dr tells you that has nothing to do with it. Makes you feel like its just a mind thing. Thats how Im feeling right about now. Like its just all in my mind when I know its not .I sometimes wish that these dr can feel what we go through on a day to day basis. Really irritated.....
yes!!! happens to me all the time!!! and they will say go to your neurologist then i go to that doc and they say oh must be a lupus thing!! i give up and i sometimes think doctors don't know or care about whats going on :( they try to hand it off to another doc instead of trying to figure it out. if you find a good doc let me know!
I hear your frustration and no you are certainly not the only one...idk why some docs have such a hard time realizing that Lupus effects everything. To me, saying "No this has nothing to do with Lupus" is like someone jumping into the river in a big SPLASH
claiming that my head
it is not effected by the water I am up to my neck in...and then adding, "Oh, and btw, those gaters nipping at your feet do not have anything to do with your head."
Hogwash, right?
Tanya, you are not alone with doctors that just don't listen or act like you are nuts. That is way I quit my Rheumy and have decided to let my lung specialist and my PCP treat my Lupus for the time being while I search for a new one. I wish you the best and good luck :)
Christine, I would much rather talk to my neurologist because she really does listen. She always tells me that she doesn't want to me to hurt, so if I need something to relieve it she will write a rx for me. But after I dropped my rheumy all my other doctors are great and are willing to work with me with the Lupus and the Fibro.
christine aiello said:
yes!!! happens to me all the time!!! and they will say go to your neurologist then i go to that doc and they say oh must be a lupus thing!! i give up and i sometimes think doctors don't know or care about whats going on :( they try to hand it off to another doc instead of trying to figure it out. if you find a good doc let me know!
Janice, did we have the same doctor ??? LOL.. I really don't think they realize that just because 2 people have lupus it doesn't mean that those 2 people have the same symptoms. It effects everyone so differently. !!! I feel like I live in that river you speak of and at times it feels like I am going under. I finally got weened off of prednisone and they put me on Mobic to help with inflammation and I had a reaction to it.. So now I am hurting everyone and my pain pills are not even touching it. ( I take Loratab and Tramadol). I slept 3 hours last night, so I see a nap in my future this morning.. Hope you are feeling better.. xoxoxo Bethany
janice said:
I hear your frustration and no you are certainly not the only one...idk why some docs have such a hard time realizing that Lupus effects everything. To me, saying "No this has nothing to do with Lupus" is like someone jumping into the river in a big SPLASH
claiming that my head
it is not effected by the water I am up to my neck in...and then adding, "Oh, and btw, those gaters nipping at your feet do not have anything to do with your head."
Hogwash, right?
lol..yeah...sometimes I think they all went to the same school...idk about you, but many times I have had better luck with nurse practitioners. seems like they are still open minded.
about sleep...Help! I nned some. I found another "sleep walking note" oon my food chart this morning. It said something like, "No one is here to fill in for Dr So and so" I have no idea what that was about but i can tell I was asleep because the whole sentence slants up into the food list about. Weird.
It was good to hear from you my dear! Sleep or no sleep I hope you have a great day. I am headed to bed for a nap
I
My doctor's have been supportive, but I know exactly what you mean. Before I became very ill and then received my diagnoses, I felt like it was all in my mind. I thought there is no way any one person can have all of these problems at the same time. My family had even started commenting on how I was always in some kind of pain. I hope you find a doctor that will understand how you feel inside.
Hello Bethany I think sometimes its all in my mind .It seems like my pcp cares more than any of them doctors that I go to. I wish they could walk a day in my shoes.
Bethany Wright said:
Tanya, you are not alone with doctors that just don't listen or act like you are nuts. That is way I quit my Rheumy and have decided to let my lung specialist and my PCP treat my Lupus for the time being while I search for a new one. I wish you the best and good luck :)
Rae said:
My doctor's have been supportive, but I know exactly what you mean. Before I became very ill and then received my diagnoses, I felt like it was all in my mind. I thought there is no way any one person can have all of these problems at the same time. My family had even started commenting on how I was always in some kind of pain. I hope you find a doctor that will understand how you feel inside.
Hello everyone, I told one of my dr about my brain fog and he told me he never heard such thing. so now I guess Im faking it or something. Im so glad I found my knew group of friends that know what Im going through. I can talk to my family but they really dont understand what Im going through. I have an appt to see a knew rhemy in may I pray that he or she is good. Does any body know of a web cite where I can get info about a dr? please let me know I would like some info or comments about this knew doctor.
My Doctor called it "Lupus Fog". I felt both relieved and sad to find out that it was not in my head. Good luck with your new doctor.
Hello Tanya,
Sorry to hear how your Doctor is with you....concerning my GP he tells me straight concerning the Lupus and he's told me if he ever gets a letter from the hospital directly he'd treat me himself...regarding my Dermo he's "Ace"...the problem who i have with his my Rheumo, he was quick of diagnosing me and the Dermo as confirmed the diagnosis but for helping with drugs he would'nt go no furthur than with the plaquenil...as he says i'd get to many complications off other drugs...so i'm just pleased my Dermo as stepped in and helping me on issues.
I know how your feeling though because i've had 26yrs with different doctor's no end and you can cross some who'll help to their hearts content and then there's the stubborn ones who put you off going for a 2nd appointment.
((Hugs to you mate)) Terri xxx
I sooooo agree with you it is frustrating especially the "Lupus Fog" I know when I'm experiencing something new or out of the ordinary but because they feel like you can remember somethings when you go to your appointment it negates the fact that you may have been experiencing it prior to your appointment which may be days down the line. That's when I feel like maybe I don't want to go to the doc because they make me feel like it is all in my head. My left hand has decided it wants to give out on me but afraid if I go to the doc they may say oh there is nothing wrong just take something for the pain. Anyway sorry just had to vent...wishing you better luck.
Yes, this is my plight. Or, I find the "specialists" are very condescending and speak to me as if I have a fourth grade education, I wind up addressing this issue with them immediately, making a strained visit.
When I call my doctor, I just call with information about my symptoms, I let him figure out if it is lupus. It helps with my primary care and my RA, since they work together. I'll know this is probably lupus, but I won't say that, I tell the symptoms to my primary care and he then will say, this might be lupus effect, so let me consult with your RA, then one of us will call you back. Then more then likely, the RA will call me back.
I don't pretend to know anything with Lupus, I just tell the symptoms.
Nu Direction, the left hand giving out is called neuropathy or can be muscle spasms. Have you told the doctor about the symptom? Try to do so again or write down the symptoms for a comprehensive review of all symptoms and dates for the doctor visit. Sometimes, putting all the pieces together for the doctor can help them look at the issue.
Now, that I am ill with Lupus, I treat doctors like car mechanics, I don't suggests things wrong, that I don't want to pay for. LOL, in this case "payment" is a ticked off doctor. All I do is tell the symptoms in a diary with dates and share the symptoms for a diagnosis.
NuDirection said:
I sooooo agree with you it is frustrating especially the "Lupus Fog" I know when I'm experiencing something new or out of the ordinary but because they feel like you can remember somethings when you go to your appointment it negates the fact that you may have been experiencing it prior to your appointment which may be days down the line. That's when I feel like maybe I don't want to go to the doc because they make me feel like it is all in my head. My left hand has decided it wants to give out on me but afraid if I go to the doc they may say oh there is nothing wrong just take something for the pain. Anyway sorry just had to vent...wishing you better luck.