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Life With Lupus

Doctors don't care


#1

I hate my lupus doctor I hate they are so lazy they don’t no what it’s like to have a chronic illness they just think it’s something that’s uncomfortable.they have driven my on sane to the point I need anxiety meds they won’t put me back on my old meds please Lord help someone to help mee


#2

Have you tried getting a new doctor?

I’ve been through a lot with my doctor and we’re to the end of the rope with treatment options. He’s done his best to avoid the most extreme treatments and I had thought he wasn’t taking me seriously for a while. It was out of concern for my long term well-being. Sometimes opening a line of communication can be helpful.


#3

Is it possible to see another doctor? Doctors work for YOU, not the other way around. I hope you get some relief soon!


#4

I’m a RN. I always told my patients that, medical care was a business! We pay thousands of dollars for our medical care! You deserve to be given explanations for every treatment or test they recommend to you! They need to fully educate you about your diagnosis! Most importantly, they need to listen to you!
If you went on a car lot to buy a new car, would you buy it from a salesman that wouldn’t tell you all the available options the car had? Would you buy the car because the salesman said , it was comfortable or because it was comfortable to you! Your medical care is a product that your buying! It’s your body and you only get one! If your not happy find a new doctor! It’s. Why important that you have a good relationship with a rheumatologist! They need to know everything about you and you need to feel comfortable telling him/ her how you feel!


#5

Thanks guys I needed that. It’s hard because they say my symptoms don’t completely meet lupus criteria. I have inflammation of blood vessels from skin biopsy. I get blue with low body temp. Low glomerneuphritis and high lymphocyte, high wbc and low a.n.a positive. There skeptical to put me back on lupus meds but this process of testing has taken months because doc was out of country for weeks. I just got mad because my rhuem wouldn’t put me on pain meds to hold me over through the testing. Finally I got a new family doctor and she did put me on marcotics. But Im angry at my rheumy for not putting me on narcotics? He said he’s not putting a 26 year old on them but at the same time why did he have me suffer since novemeber without anything ! I ended up going to the er 2 times they gave me prednisone best thing that ever happened to me. Love u guys thanks. Pray they find what’s wrong


#6

Janelle, it’s miserable, isn’t it?

If you really aren’t comfortable with your doctor, I hope you are starting to think about making a switch to another. In the meanwhile, though, until you do, you might want to try something that has worked for me with some doctors: write your complaints and concerns down. Make two copies of your list, and take both to your appointment.

Then work off the list with the doctor. You are the patient, you are the client, this is about you. In this way you can have better control over the conversation, and the doctor may get the message that you aren’t so impressed. You may be surprised by what you can achieve this way.
If the doctor is not receptive to this, then you have good hard evidence that, in fact, the doctor isn’t doing the job he or she needs to do.

Another point: be very specific about how your symptoms impact you. Don’t just put “fatigue” on your list: say “Fatigue prevents me from making meals most days, and I no longer am able to clean my house.” Just an example.

You may find that your doctor starts caring more than s/he did. Let us know how you’re doing

Seenie


#7

Janelle,
I’m so so sorry that you are going through this pain! I’m so sorry that, any of us are going thru our life this way! Please honey don’t think I mean this wrong! I cannot feel your level of pain and we def, all have different thresholds for pain! My rheumatologist only provides pain medications in hospital settings! I’m allergic to all narcotics so, it doesn’t matter to me! I did ask him why he felt that way? Being a nurse, I’ve heard the exhaustion in ERs among the medical staff because it’s so hard to distinguish who really has pain and who is seeking drugs! I wanted him to understand from someone dealing with this illness as a patient and medical staff! I explained that one night I hurt so bad that it did cross my mind that it wasn’t worth living thru it! I wanted him to know how bad the pain is…
This one his answer to me! He said, our bodies have pain to tell us something is wrong! If I mask that pain with a narcotic, my patient cannot feel what the body is saying! "When I’m trying to diagnose these autoimmune diseases, I need to know where the pain is located and how it feels! If the blood work doesn’t tell me and I believe there is an autoimmune issue - I try to follow where the disease attacks! He also explained that, when he starts treatment, yes there is laboratory levels that help him but a lot of the labs only show when treatment is working or if it’s not working g too late! He explained, when the pain eases then he knows if he is on the right track!
This rheumy treated me with negative antibodies! I had every clinical criteria and twenty years of medical records with complications caused by lupus but negative lab work! Everytime I had pain or new symptoms he would only put me on short periods of prednisone! He kept explaining that his goal was to treat with medications that can control my disease and as little steroids as possible! I just had to go on a daily dose of prednisone! thank God he started treating me a year ago because last month with this flair all the antibodies are high. Including those like antids DNA and antiphospholipids ( not one of them but all). I feel the doctor should explain to you why!
I had another rheumy that also agreed I had lupus but would not treat without meds! I begged him! I cried! I left and found another rheumy outside my state and I’m so glad I did! I probably would not be alive today! If you once had positive blood work and at that time was not on a medication that would cause lupus symptoms and blood work then your disease will not go away! If the rheumy before followed rheumatogy criteria handling symptoms and blood work, your disease may be in remission or like my doctor told me- he believes with those that has these diseases a long time the immune system can still recognize the antigens but is too tired to actually make a strong antibody! He explained that’s why he treats if there’s enough history or clinical criteria! It is just his theory after 30 years of research but he must be on to something because after a year of treatment, all my testing is positive! I think a second opinion would only benefit you!
With that said, I say this with great sensitivity! I’ve worked as a nurse for 30 years! I believe narcotics def. have their place in the medical world but if a patient has pain levels so bad that a narcotic is needed after three weeks- you need to re evaluate the patients condition! It’s because of one of these issues 1. Something else is wrong 2. They have a tendency to develop tolerance to narcotics which makes the pain require more and more narcotics and soon there will be addiction!
Honey, I believe without a doubt that you are suffering severe pain! I do too! It scares me to death because having chronic pain is highly connected to addiction- dah, our pain never goes away! Try with everything you have not to take that pain Med hardly ever! Get you an awesome rheumy that truly understands your disease and how it should be treated! I don’t know your situation involved around ur diagnosis in the beginning but believing that the autoimmune disease disappears and your stop all treatments is old school! Taking pain medication because your doctor won’t give you proper treatment is just wrong! Obviously if ur pain level is increasing with the withdraw of lupus medication, proves you needed it! To give you a narcotic for months or a year instead of needed meds is causing one to become addicted makes me agree! When I was just being diagnosed, I became so angry at the General doctors! When I was ill and they had no clue the first thing they wanted to do was give me narcotics! When I said, I cannot take narcotics , they lost the easy way of out of hand a narc and wipe their hands free! You must stay in control with the meds! Fight for a proper diagnosis and good doctor as hard as you fought for the narcotic! As much as I recognize and understand the effects narcotics can cause one, I hurt so much that if I could tolerate them and had them on hand - it would be hard not to take them everytime the pain came around trying to prevent it from getting worst lol! The problem is that our minds love it and our bodies build tolerance and then addiction!
Please don’t think I believe that you are just seeking drugs cause my gosh- I understand this pain is massive and horrible! I think everyone of us should be allowed some on hand for the horrible days but stay in control of it! Def! Seek treatment with proper medications that will treat your problem because the narcotic doesn’t prevent the desease from causes damage in anyway! It only mask the pain some so you don’t know it’s doing it!
I’m praying for you and asking god to send good medical care your way!
Xoxo


#8

Great advice. It’s your body and he is working for you!


#9

Wow you guys are great thanks . I need to be patient to and take these pain meds for a month but if they don’t get me back on lupus meds after this month of testing I need to move on. I actually got mad at my rheumy my because he wouldn’t give me Anything to hold me over during 4 months of testing and I cried on the floor. The ibprofen 600 is what helps the most the prednisone is God but he won’t give it to me till testing is over
I also am just angry I have to take these meds to hold me over this month when I should just be thankful. I changed my md and she gave me something to hold me over. I just need God to give me what I really need because I’m a singer and I wanna inspire people. I’m scared God won’t heal me because it’s been so long and the tests are never good enough for rhuemy( even with history) they always want more and more and more waiting and they are slow. I don’t want to waste my life on sofa lol pray for peace for me and that I would be on the doctors hearts and they would order tests that are beneficial. Love u guys thanks


#10

We know it’s hard, Janelle. If only we could see a doctor, have the tests then and there and go home with a diagnosis and treatment plan! It’s the waiting and the testing and the waiting and the drug trials. It must be really frustrating for doctors too.

I think rheumatologists have an especially difficult role to play: every one of their patients has a chronic/incurable condition, and they are all in pain. Patient after patient, day after day. “Ya ya let me guess, you’re in pain.” I guess to cope with that, they have to kind of deafen themselves to the “I’m in pain” thing. BUT that doesn’t mean that you, as a patient, should be satisfied with being sloughed off and being sent away with no prospect of relief for weeks or months on end.

As thenewme says, they work for you. Be assertive. Make sure that they know how bad it is and, most important, how this affects you. If nothing else, you may find them more empathetic to your problem.

All the best, and hang in there!

Seenie

PS I don’t have Lupus. I have severe Psoriatic Arthritis, I’ve been where you are now, and I think I may have learned a few things along the way. :wink:


#11

Thanks may God help all of you and we will be pain free one sweet day. The Lord will give us answers. Supposedly the more we suffer the more we receive in the kingdom. Let us all share our stories with those suffering on earth and give all of our hearts. Thanks for the support I will pray for u all.


#12

I agree with the R.N it is very important to have a good relationship with your dr. My dr and I have a great relationship I even have his personal #. I’m a person that’s in pain 50% of the of the month so instead of taking the 800mg of Motrin 3x a day or the norco every 8 hrs I talked to my dr about what he thought about medical cannbis and he asked if it helps and I told him yes cause it does so we bout agreed if the smoking helps then yes. I’ve had a 60 count of norco for over 2 months now and only take the pills if it’s just unbearable. Ask your dr about the drug Benlysta it’s a once a month infusion over a hours time and also ask about the drug Acthar
Hp gel it replaces the prednisone and helps with pain they are pricey but they have all kind of assistant programs that will help with the cost. One thing I have learned with lupus is to listen to ur body if it’s saying I don’t want to play today then just rest you feel better


#13

Hi janelle, I went to my pastor one day and said,"pastor robbie"I pray about my lupus,I have layed it at gods feet and I He just isn’t answering my prayers…His replied by asking,"when your done praying do you think about it? Do you fret or worry about it?My reply was,“all the time”…And Robbie said"well,Celeste you took it back!! You ask god for help,and then you take it back,you don’t trust in him enough and he knows it…when I pray I always think about Robbie’s advice…Try it…