Life With Lupus

Muscle spasms

I was in so much pain and swollen I went to the ER. They took me back right away. The Nurse was in the middle of hooking me onto the heart monitor when she said she’ll be right back the doctor walks in sits down folds his legs and says “what can I do for you?” (as I lay there visibly in pain). The nurse peeks in the curtain to ask if she should continue with the heart monitor he says “hold on”, I was waiting for him to examine me. He never got near me, never touched my visibly swollen feet or hands. I told him I was swollen and in so much pain. He asked about my meds. I told him I was on Dilauded for a few years but decided to end them and was not talking my meds because of stomach problems. He say “well how do you expect me to help you if you don’t take your meds?’ I was so mad that he was sitting there with his legs crossed judging me. I said " Are you fucking serious right now?’. He gets up and says you cussed at me I don’t have to treat you”. I said what kind of Dr. are you?’. Had he done his job by examining me I would have had the chance to give him the timeline as to why, when and how I stopped my meds. I did report him and am now strongly advocating for those of us who live with chronic pain. This man should not be practicing medicine. Please share my story. I apologize for the language.


Personally, and I do mean for me personally, I do not feel you need to be apologising.
Can doctors really refuse to treat you? Yes, they can. They have done so to me previously. In my case, they made (false) assumptions, they did not investigate, they gave an incorrect diagnosis and their assumptions were subsequently logged in my medical file, which followed me around for many years. That was until things got to a point of being life threatening, then they investigated a bit more and came out with the line “Ohh look what we found…” I’d been telling them for years, decades even, that there was a problem. I was labelled as a drug seeker, a hypochondriac and my symptoms were all ‘idiopathic in nature’ (Imaginary or ‘All in my head’ which is ironic as my situation is a brain condition and therefore ‘All in my head’ :wink: ).

I also queried their professionalism… …well, that only made matters worse. I’m in Australia and here we have what is called the AMA (Australian Medical Association) and the members of which all rally behind each other and, in real basic terms, I was black-listed. Specialists wouldn’t see me for fear of repercussions. Years later, after obtaining a confirmed diagnosis from an interstate specialist I questioned one specific dr and his response was “…well, don’t be blaming me, you already had a diagnosis…” Yea, a false one.

You state you were on Dilaudid, often that is an automatic ‘red flag’. Here it is also known as a drug of dependence or a Dangerous Drug of Addiction (DDA) and as soon as it’s mentioned the medicos seem very quick to label us as ‘Drug seekers’, we aren’t on this stuff because we like it, we’re on it because we have a ‘GENUINE NEED’. There have been recent reports here in Australia of the dr’s who prescribe these meds having had government warning letters, subsequently the patients have been told by the dr’s that they will no longer be prescribing these medications and in some cases patients being rejected by the drs. This has shown that the knee jerk reaction by governments is having a huge impact on everybody, including those with a true and genuine need.

My recommendation here is that if you have or can find a good dr with a true knowledge of your situation and condition, stick with them. From my experience it can be extremely difficult to obtain a good and knowledgable dr when it comes to rare conditions, they can be very hard to find.

Merl from the Moderator Support Team

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Thank you so much for your support. It’s good to know that I am not alone. You really have it worse over there. I just heard on the news that Johnson & Johnson just got hit with a huge fine for contributing to the Opioid Crisis in on of the states here in the U.S. Of course they’ll appeal.

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Yes, they will appeal, then the govt will appeal back. And whilst they tie this up in court for years, the person having to deal with the injustice of it all is the patient. Here it is illegal to knowingly cause harm to an animal, but the government can cause harm to a person and that’s OK?? Madness. Animals have more rights than people. If you kept an animal in pain you’d be charged with a crime, but a person… …ohh that’s different. Is it? Grrrrr

Merl from the Moderator Support Team

I was taken to the ER by my family a couple of days ago. All of my muscles were contacting. My toes were curling under, my legs and arms were stiff, hands curled up. My face muscles were twitching and I couldn’t even talk. When I tried to talk the words weren’t coming out right and I was slurring terribly. I have systemic lupus, fibromyalgia, IC, and many other diagnosis. What did the doctor do for me?? He didn’t even examine me! He said he couldn’t understand me and even though my family was there and told him my history and what was happening, he said it was anxiety. He gave me Ativan through IV. Yes, the Ativan did help the muscles, but there’s still something wrong. I’m still in bed with migraine and dizziness. I’m having low oxygen SATs so I’m staying on my oxygen. But I’m also just not feeling right. I’m really angry at the doctor. Now I will have to pay close to $1,000 for that awful treatment. @Reniac & @ModSupport

Hey Chaplana,
Having multiple diagnosis can make things all that much more difficult. You can see 4 differing specialists resulting in 4 different diagnosis, with each specialist discrediting the others as ‘their’ diagnosis is the correct one. Autoimmune conditions can be notoriously difficult as many symptoms can run in parallel but without a defined diagnosis.
As I say above, I’m in Australia. Here we have GP’s (General practitioners) basically they are your ‘Family Dr’. Then we have physicians, they investigate complex cases. Then we have specialists. If your GP can diagnose, they can refer you directly to a specialist in that field of the diagnosis. BUT if that initial diagnosis is false or incomplete very little further investigation is undertaken. I would recommend you need a medical investigator, a physician, to pull together all of the reports, all of the tests and look at you, the whole person, and not one specific field of specialization.

This can be a long arduous journey and it can take some real determination on your part to follow through with as some medicos will simply write the patient off. Don’t let them until you get the answers you need.

Please do let us know how you get on.

Merl from the Moderator Support Team.

Hey Merl,
I am trying to hang in there and get answers. I do have my primary doctor as well as rheumatologist and neurologist that I see regularly, however my rheumatologist told me to go to the emergency room if I have a flare and can’t get in with her. I’m not sure if that’s what is going on. My body seems like its not even my own anymore. I’m also going through some cancer screening. I’m still fighting, just tired. :disappointed: @ModSupport

Hi, Chaplana
I’ve changed the subject line to try to draw more members in on the convo, and I’ve also revived an old conversation.
Hope we get more people to pipe up on this interesting thread.

PS Our search engine, the magnifying glass in the upper quarter, is really powerful. Use it to find other conversations and members!

Anyone expecting any answers from the ER is going to be disappointed. The further you get along in this horrible journey the better you will fit all the piece together. All they can do in the ER is stabilize and treat immediate symptoms (hospitalize if necessary) All follow-ups are left up to your regular docs. The anxiety word is disturbing to patients wanting to be heard, but to the medicos it has a different meaning. Symptoms DO cascade and justifiable patient fear rears its ugly head making things much bigger than MEDICALLY they are. Trust me you would never have gotten IV Ativan if he thought for a moment you were a “nutter” Ativan not to mention administered IV is very close to the nuclear option… The big problem is “time” ER docs don’t have enough of it to take the time to explain, comfort etc. Supposedly the nursing staff is supposed to do that but evermore frequently they are pressed too. Keep in mind no matter how concerned you and your family are. It’s likely in the bay next to you someone is coding, a chopper is landing on the roof with a serious trauma, and a drunk just assaulted the admitting nurse. The ER is generally no place for the chronically ill.

Merl gave a pretty good explanation of how to sort things out. A diagnoses of SLE is your primary DX. FMS, IC, an likely some of the other DX you mentioned are either co-conditions or Secondary. Doesn’t mean they aren’t real, it just means that you likely would have them were it NOT for The Lupus thing. So why you may have a PCP think of him as they guy who takes care of the little stuff and functions as a traffic cop. Your rheumy is THE GUY. With him you need to work out a treatment plan. Its an IF -THEN.

You did the right thing with this last flare, its a matter of expectations. If you had gone in to get the spastic thing (not uncommon wit SLE) taken care of which it was, you would have left pretty darn satisfied. If you went in for work-up answers etc, there is no way you would get what you wanted.

Not sure how to explain it so you understand NO ONE is discounting your experience, or doesn’t get what you are saying WE DO. Hopefully sharing and learning from each other experiences will help you gain control of the horrible thing you have. My grandaughter (who just had a baby yesterday) when first DX’d with Lupus was a frequent utilizer of the ER and bed bound. She hasn’t been to the ER in a long time and is currently living a pretty good life. There are a lot of challenges ahead and though she has been in remission for a while discovered those ANA numbers climbing last night so there will be some pretty good bumps in the road ahead… But with a lot of work she has a “plan” for nearly every contingency and still feels in control and trust me she WILL be incontrol LOL. Sooner or later all of us learn to be self adocates and OWN our disease rather than have it own us. You are in the right place for that. So welcome