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lululupie

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 #1 
Hello,

I was wondering about how involved your doctor is with your disease, how often do you see them, how caring are they, do you contact them during a flare? If they know you are flaring what do they do for you?
I'm asking because my doctor is very smart and has been good, but I just feel like he doesn't really care.

For example this week I've been in a bad flare of my symptoms and I contacted him to ask him what I can do about my pain because I've been hurting really bad, he just basically writes back (patients can message him directly) that my "discomfort should go away as I begin to resume my normal activities."

It kind of made me upset, it's like okay thats really easy for you to say because you're not the one over here in pain! I'm just tired of it and I wanted to know what your doctor does or says when you are in a flare and do you have a pain medication handy for when you do flare? I would love to know!
crayolas

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 #2 
Hey there, Lulu!

I am so sorry that you are experiencing such pain as well as feeling that your doctor is being dismissive.  Have you been seeing this doctor for some time, or are you a fairly new patient to the practice?  Not that it excuses a dismissive attitude, but it takes time for physicians to know their patients' history and patterns of disease(s) activity. (Did you not hear me Dr.Blank?  I am in p-a-i-n and I want you to make it stop!! probably went through your mind as you read the response, huh?)

I see my rheumy every 4 weeks because I have severe lupus and several other AI diseases. Every once in a while I go 6 weeks, but that is seldom.  Because I have blood work and see the rheumy so often, he has a firm grasp on the diseases and activity levels; the blood work alerts the rheumy to problems which are on the way and have not presented in my daily life.  I do have a prescription for pain meds from my pain management dr which I take daily.  I am able to contact the rheumy's office (do wish all of my "ologists" made that available) which are considered non emergencies.  He always answers within 24 hours--even on weekends!. When I am in severe distress with organ involvement, I just head to the ER and my husband makes a call to the rheumy's cell phone service before arriving at the ER.  All this to say I have been this rheumy's patient for many, many years.  I do not know if  other patients have this level of trust with him.  Many describe rheumy as being a son-of-a-gun, even fellow doctors.

Rheumy lives and dies by the bloodwork and he says that my description of pain is not objective.  Cannot argue with that, but I do say that he is quite proactive and, although the personality can be abrasive, this rheumy does have a sincere desire to help his patients.

Once again, I am very sorry that your pain levels are high.  The only thing I could suggest is for you to head to the ER if it is unbearable. (Doing so would bring on yet another dilemma because the ER might make the assumption that you are a pill seeker.)  Do you think that it is an option for "your discomfort should go away as you resume your normal activities"?  

Be careful about self medicating with over the counter pain relief because long term use does all kinds of liver damage.

Sending you Well wishes and relief from pain



 


DeBartolo

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 #3 
ok, don’t shoot the messenger - but it’s my understanding (after talking to several ‘experts’ in the field) that a large number of rheumys that treat lupus patients, don’t think pain is a defining characteristic, or even a significant aspect of the disease, as it is with their RA patients, so they do have a tendency to blow off lupus patient pain complaints.


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crayolas

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 #4 
You are right about that.........I was prescribed pain meds after I was dx with RA and fibro...did not have  any anything to do with being a lupus patient.  Rheumy referred me to a pain clinic.
lululupie

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 #5 
Thanks so much for the replies!
I have been seeing my doctor for a while, since 2011. So he knows me fairly well. I go every three months for blood work. I am feeling much better but these last few weeks were so tough and having someone tell you that your "discomfort" should go away when you start returning to normal activities really struck a nerve with me.

I do have a prescription for tramadol but it was not helping my pain at all. I know I could go to the ER but that it always a VERY last resort for me.

I guess it is true that even most doctors don't really take our pain into consideration. Especially since it is chronic and not a temporary condition. It's very frustrating for me because I can usually handle pain well but if it goes on for days it's like mentally I can't handle it anymore.

Thank goodness I have an awesome bathtub because the hot water is the only thing that seems to provide temporary relief on bad days!

But seriously as patients that deal with chronic pain it's so frustrating to not be taken seriously, having to fear being labeled a drug seeker, and just having to grit our teeth and bear it.

Sarah
RockyRaccoon

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 #6 
Hi, I'm newly diagnosed and have only seen my Rheumatologist a couple times now. Being new to this, I have a lot of questions and concerns. I usually try to do my own research as I don't want to inconvenience my doctor with something I can figure out myself, but sometimes I have questions I need him to answer. Just recently I started to feeling pain with I breathe and it's worrying me. I'd like sone blood work or a chest X-ray or some other test to determine if Lupus is affecting my lungs, but instead of addressing my request, he just prescribes a dose prednisone. I'm sure he's a knowledgeable and experienced professional, but I just don't feel he takes me seriously.
Baker1

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 #7 
For me if we think everything is going ok I see her every 3 months. Right now, I saw at my 3 month visit and she took me off methotrexate and put me on Cellcept. I saw after 1 month of being on Cellcept and she raised the dose and I'll see her again in another 6 weeks. We will see what happens after that.
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Diane M
"I was chasing my dreams, but tripped over reality and busted my head on the truth."
taffylinden

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 #8 
Hi, Rocky. Do you take a list of questions in with you to give to the doc? I've found that helps. But if it doesn't, you'll need to make a decision. Doctor-shopping isn't such a good idea, yet I DO think a doctor who won't answer questions is not the doctor for me. I used to be passive about that. I had an excellent eye surgeon in California who got too busy to answer questions. His wife had expensive tastes, and he wanted to retire early, so he started scheduling patients 10 minutes apart. He wouldn't even call my other docs back, and I once I had to jump up and block the door to ask a couple of important questions the other docs sent along with me. That was when I realized I had to let him go.

I wouldn't mess around with chest pain. Get a second opinion from your PCP, maybe? 

Best of luck!
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