Lupus Support Group
Lupus is an auto-immune disease in which the immune system cannot distinguish between threats (like viruses and bacteria), and healthy cells and tissue. As a result, the body produces antibodies that inflict cell damage, most commonly targeting joints, skin, kidneys and the nervous system. Join the group and find support for coping with lupus.
Hi everyone.
I was diagnosed with lupus (positive anti-Smith antibody) and dermatomyositis (positive Mi-2 antibody) this past spring. I felt it explained so very much of what had been going on with my body during the last several years.
I was put on prednisone and plaquenil. Time ticked by ... and only the rash(es) got better. I told the doc I was even feeling a bit worse as far as fatigue. Meanwhile, the protein in my urine went from negative, to trace, to 1+ the last time it was tested. I have now lost ALL sensation in the soles of my feet and in my fingertips. Let's not even mention the tremendous weight gain I've experienced. I was very frustrated.
Well, I switched rheumatologists. I went to a different doctor in the same group, but I had heard he was much more compassionate and listened to his patients.
I had my first visit with him this past Thursday.
He listened to everything. He was compassionate. And yes, he was 'kind'.
He examined me and then gave me his 'take' on things.
First, he thinks I'm out of shape. That's what is causing my aches, pains and discomfort. That's what causes the burning in my hips/thighs as I just walk down a hallway or up a single flight of stairs.
Second, he wants me to get better sleep. That's what is causing my fatigue and feeling of heaviness.
Third, he wants me to quit smoking (I know I need to). He thinks that is causing my GI problems (colitis, gastroparesis, choking on my own spit due to x-ray proven dysmotility issues in my esophagus, etc.).
Fourth, he wants to do an injection into my shoulder (I have multiple areas of tendon tears and synovitis). My shoulder specialist feels this is due to lupus destruction of my joint ... and wanted to do an intra-articular injection under x-ray control to confirm this. The shoulder specialist feels I'm heading towards a total shoulder replacement. Well, this rheumatologist wants to do a simple injection to help with the discomfort and that should be that. "I think the joint is still maintained and we see this a lot as people age." Oooooo kay.
He is now reducing my prednisone ... and is going to taper me right off of it.
He feels most, if not all of my symptoms, are due to 'other factors'. Not lupus ... not dermatomyositis.
I was jut flabbergasted. I really was. He didn't even mention what might be causing the protein to rise in my urine.
I am beside myself now. OK ... I have lupus and dermatomyositis ... but NONE of my complaints are due to that. They are diagnoses that are asymptomatic at this point, I guess.
What do I do???? I feel like I FINALLY got an answer to what was causing my health issues ... and he completely said all of the things were caused by something else.
Please ... whatever advice or counsel anyone can offer would be appreciated ... even if it is for me to shut up and just do what he says.
Posted on 12/28/13, 11:15 am
I was diagnosed with lupus (positive anti-Smith antibody) and dermatomyositis (positive Mi-2 antibody) this past spring. I felt it explained so very much of what had been going on with my body during the last several years.
I was put on prednisone and plaquenil. Time ticked by ... and only the rash(es) got better. I told the doc I was even feeling a bit worse as far as fatigue. Meanwhile, the protein in my urine went from negative, to trace, to 1+ the last time it was tested. I have now lost ALL sensation in the soles of my feet and in my fingertips. Let's not even mention the tremendous weight gain I've experienced. I was very frustrated.
Well, I switched rheumatologists. I went to a different doctor in the same group, but I had heard he was much more compassionate and listened to his patients.
I had my first visit with him this past Thursday.
He listened to everything. He was compassionate. And yes, he was 'kind'.
He examined me and then gave me his 'take' on things.
First, he thinks I'm out of shape. That's what is causing my aches, pains and discomfort. That's what causes the burning in my hips/thighs as I just walk down a hallway or up a single flight of stairs.
Second, he wants me to get better sleep. That's what is causing my fatigue and feeling of heaviness.
Third, he wants me to quit smoking (I know I need to). He thinks that is causing my GI problems (colitis, gastroparesis, choking on my own spit due to x-ray proven dysmotility issues in my esophagus, etc.).
Fourth, he wants to do an injection into my shoulder (I have multiple areas of tendon tears and synovitis). My shoulder specialist feels this is due to lupus destruction of my joint ... and wanted to do an intra-articular injection under x-ray control to confirm this. The shoulder specialist feels I'm heading towards a total shoulder replacement. Well, this rheumatologist wants to do a simple injection to help with the discomfort and that should be that. "I think the joint is still maintained and we see this a lot as people age." Oooooo kay.
He is now reducing my prednisone ... and is going to taper me right off of it.
He feels most, if not all of my symptoms, are due to 'other factors'. Not lupus ... not dermatomyositis.
I was jut flabbergasted. I really was. He didn't even mention what might be causing the protein to rise in my urine.
I am beside myself now. OK ... I have lupus and dermatomyositis ... but NONE of my complaints are due to that. They are diagnoses that are asymptomatic at this point, I guess.
What do I do???? I feel like I FINALLY got an answer to what was causing my health issues ... and he completely said all of the things were caused by something else.
Please ... whatever advice or counsel anyone can offer would be appreciated ... even if it is for me to shut up and just do what he says.
Posted on 12/28/13, 11:15 am
It sounds to me like your doctor is trying to figure out what's lupus-related and what isn't. One of the first things my rheum did was put me on sleep meds. I had resisted them for years, but it was the right move and helpedconsiderably. I'vemade my peace with it.
Care is a partnership between you and your doctor. He probably doesn't want to medicate something that can be managed another way; gentle exercise doesn't cause the nasty side effects that some medicines can. Can you consider his recommendations to be his way of saying "Let's figure out what's really going on here, and strengthen your body to handle whatever care is in the future"?
Regardlessof medical specialty a healthcare professional won't usually stay silent when they know you're actively harming yourself. Quitting smoking will do more for your overall health than any other thing you can do.
I've had doctors try the same routine on me. I call it "chasing cars". They take off running after each of the symptoms of chronic illness as if they exist all by themselves. I believe it's simplistic thinking by doctors who don't have the in-depth knowledge of Medicine that's needed to see the big picture and integrate their observations into a holistic picture of their patient.
They keep their noses to the ground and chase off after whatever fixes their attention. I know this sounds harsh, but I've wasted a lot of money I worked very, very hard to earn by feeding useless investigations of my symptoms as separate illnesses. I refuse to do that anymore.
I'd take a really rude and insensitive doctor who really knew what he was doing...over a really user-friendly type...any day of the week. Competence comes first for me, compassion second.
I promptly found Yet Another Rheumy to take his place who went back to my original dx's of course ... Sigh.
I eat healthy. I exersize how my body will let me. I know what will and won't work with my body because I've already tried it, and when a doctor won't listen and has a god complex, well, I was looking for a doctor when I found him.
Quit smoking yes...it will help you immensely, however you will not see those benefits for about a year...but it will benefit you so much. I smoked for 30 years and quit 7 years ago, best thing I ever did. Good luck dear.