So I know there are a couple of blog readers who have Lupus so let me know if this sounds about right for how you're treated.
Yesterday afternoon my daughter was in a lot of pain from the Lupus. And I thought she was dehydrated. Her Rheumatologist hasn't given her any pain medication. Has told her to take Gabapentin and Ibuprofen even though she told him most days the only thing she can do in lay in bed in pain. She's taking 2 Lupus medications and Steroids. Nothing is working. They've changed the Lupus medication twice, still not helping.
So she went to the ER yesterday. Right away the nurses are having an attitude with her. One asked, "Why are you crying?" To which my daughter responded with, "Because I'm in pain." The nurse says, "Well there's not much we can do for Lupus pain, so you're just going to have to get used to it."
So she went to the ER yesterday. Right away the nurses are having an attitude with her. One asked, "Why are you crying?" To which my daughter responded with, "Because I'm in pain." The nurse says, "Well there's not much we can do for Lupus pain, so you're just going to have to get used to it."
Wtf? Seriously?
So they, hooked her up to an IV because she was indeed dehydrated and did a chest X-ray and a CT scan. Said nothing had gotten worse, gave her a shot of morphine and sent her home after 7 hours.
She see's the Primary Care doctor on Monday and I'm hoping he either sends her to pain management or gives her something for the actual pain and not just more Gabapentin and anti-anxiety meds. He's also supposed to give her a referral to a Cardiologist.
There have been so many people who are addicted to drugs that go to doctors drug seeking pain meds that doctors don't want to give any pain meds to people who are actually in pain now. Completely insane.
Could your daughter's primary care physician refer her to a Lupus Specialist? Do such specialists exist? A pain management clinic might be useful too.
ReplyDeleteShe has a Lupus specialist the rheumatologist. He's been trying different meds, nothing is working yet. I'm thinking primary care should send her to pain management.
DeleteThat doesn't sound right at all. Those nurses need to get out of nursing, since they're clearly unsuited to it. I hope your daughter can get the help she needs. It's miserable to be in pain all the time.
ReplyDeleteI hope so too.
DeleteAnother factor in the pain medication thing is that our "representatives" have stuck their fucking noses into our medical care and decided for us that we don't NEED pain medications. Addictive. Well who gives a shit? Chemical dependence is different, still withdrawals etc if you don't get your medication, but you take it to live, you don't live to take it. Source? Me. I have a prescription for stuff that does indeed help me function. Our gov't is a huge part of this problem.
ReplyDeleteAlso, MEN get pain medications. Women generally do not.
I am sorry this is happening to her, it's awful to see your child in pain. No matter how old they are, they're still your kid.
Yes, exactly. I was just telling my daughter's friend this the other night.
DeleteTheir behavior definitely doesn't sound appropriate. I've also run into nursing staff who were callous about pain, so I know it happens, but I agree with Jabblog, people like that are not right for the profession.
ReplyDeleteI hope the primary care doctor can do something on Monday, but it's terrible that your daughter will have to go through more than two days of this in the meantime.
There are plenty of options for dealing with pain, but unfortunately your last paragraph is true. For years now we've been in full Reefer Madness mode about opioids, and so a lot of people who need strong pain medications aren't getting them.
You might want to try a different emergency room or one of those speed clinic places like Zoomcare. I don't know how much they could do but it might be worth a try.
She said if it gets too bad she will go to Urgent care.
DeleteThis really sucks, Mary. I'm very sorry that your daughter is struggling with multiple issues and that no good solution has yet been found. Yessum, with all the addicted drug seekers flooding the zone, doctors and nurses are wary and suspicious of legitimate patients that genuinely need pain management. I wish Lizzie the best as she seeks answers from her PCP on Monday.
ReplyDeleteThank you, I hope the PCP can do something.
DeleteSo very sorry your daughter is in pain like that.
ReplyDeleteThank you.
DeleteThose nurses are inexcusable. I've not known anyone with Lupus, but I know it is very serious condition. I hope she can find relief very soon.
ReplyDeleteThank you.
DeleteSo...do the nurses think she's crying on cue maybe? What horrible people. I hope her doctor will take her seriously (anti-anxiety meds, right. Of course, it's all in our head 🙄 🤬).
ReplyDeleteIt's always all in our head.
DeleteI hope things get better for her ASAP. I agree there is way too much political interference in medical care of all kinds, including pain management.
ReplyDeleteAgreed. Thank you.
DeleteOh Mary, that's awful! What a dreadful way to treat someone in pain. I hope your daughter gets some kind of relief very soon. Heartfelt wishes to both of you.
ReplyDeleteThank you.
Delete"Why are you crying?" What sort of f***n b***h becomes a nurse and then mocks patients in pain? Yikes.
ReplyDeleteIt made no sense to me at all.
DeleteThat is so horrible. I have a friend that honestly needs pain meds and can't get anything either due to the lawyers scaring all the doctors.
ReplyDeleteThat's so ridiculous.
DeleteThey tend to leave people in pain here as well, and most often we either cannot even get to the doctors or we have to wait for years, it is just terrible business being sick and ill these days.
ReplyDeleteMy daughter took your suggestion a couple of weeks ago and has been using marijuana edibles to help with the pain in the mean time. They are helping her.
DeleteGlad it helped her at least a little bit.
DeleteMary, so sorry to hear that! She better get some real relief when she visits her doctor. Usually nurses are the sympathetic and good ones but those women sound horrible.
ReplyDeleteI sure hope so.
DeleteI'm so sorry about how your daughter was treated. I work at a hospital and that nurse was completely inappropriate! I'd report her behavior. You're completely right, though, the drug seekers who come to the ER for pain meds to fuel their addiction ruin it for the rest of us!
ReplyDeleteI agree. I would report her but my daughter doesn't want me to in case she has to go back to that hospital.
DeleteMary what lupus meds does the rhumy have her on. The reason we lupus people are in pain is mainly due to inflammation. Too much prednisone or long term stops helping with the inflammation and pain. Gabapentin is not normally recommended for lupus. Especially if there is kidney, lungs problems. Gabpentin is entirely excreted by the kidneys. This last month my pain was off the chart. I was given Toradol. It's a powerful anti inflammatory and a strong NSAID.It is for short term use but it works wonders. The other thing is the doctors need to find out why there is so much pain. Is it nerve pain on top of inflammation? I'm glad I wasn't at the hospital when that nurse told your daughter to deal with it. She would have been on the floor. I'm so sorry she is going through this. P.S. yes, taking pain meds from people that need them is a problem across our county.
ReplyDeleteThey have her on Benlysta, Azathioprine, and Prednisone but only 5mg of the prednisone. The Rheumatologist gave her Gabapentin and told her to take Ibuprofen until the Lupus medicines start working. They refuse to give her any other pain meds and he just shakes his head and says yeah, there's going to be some pain until the meds start working.
DeleteSo sorry that your daughter is having lots of pain. The nurse could show more compassion instead of being a jerk.
ReplyDeleteYou would think but I guess not.
DeleteWhat kind of nurse says you just have to live the pain? There is no nursing there. I'm sad to read about this hospital visit. Of course when you're in pain it can be hard to fight for better treatment. I hope there is some help for her.
ReplyDeleteI hope one of these doctors coming up will help.
DeleteI hope she gets some real help soon.
ReplyDeleteI hope so too.
DeleteDear Mary, I am so sorry for what your daughter is going through. 😢
ReplyDeleteThank you.
DeleteThat sounds so tough, Mary.
ReplyDeleteI’m sorry your daughter had to go through all that and be treated so dismissively.
I hope her primary care doctor takes her pain seriously and gets her the help she needs soon.
Thank you, I hope so too.
DeleteThe first time I was in the ER for Lupus was horrendous. They had no idea what to do for my pain. I was screaming like a banshee for help.
ReplyDeleteOne nurse who was working in ICU had come down to see a friend in ER and heard the commotion and she came over assessed the situation and said ( I don't remember the drugs) give her this and this in an IV cocktail and it will help. The doctor was on a call with a Rheumatologist and asked if that would work and the doc said do it. It worked. I found out later that that nurse has Lupus and had to have a kidney transplant. She know all about pain. I still don't remember the drugs but DAYUM, it made my pain calm down. After an hour of observation they sent me home.
But I have to say this, I am on Gabapentin and Arthriten (OTC drug for severe arthritis pain). I'm not seeing a Rheumatologist anymore because the only one within a 30 mile radius gave me drugs that f**ked up my heart. He never checked my chart to see about my health history. Stupid F**ker. If I had a better back that could withstand the pain of the trip, I'd go to San Antonio for treatment.
I see my family doctor every 4 months and he does full blood panels for liver, kidneys, a full immune panel, the works every time I see him. We talk at length about any flares and pain. He does an EKG in his office and cognitive drills throughout the whole half hour I'm there because I have bad brain fog. He's a great doctor and he cares about his patients. If he's unsure, he knows a good Rheumatologist in San Antonio that he can bother to ask questions about my care.
I have to say not every flare is going to be the same and not every Lupus patient is the same. It's a hit and miss game for the doctors to find what works but the sad thing is nothing really does work for us. Many of the drugs will end up killing us. It's up to us to do some homework and check the drugs we are taking and read up on research that is going on right now that might work in the near future. My main thoughts are Lupus treatments are a shot in the dark. They work for some but not for all. Because I stopped seeing my Rheumatologist and Pain Management doctors was because I came to the conclusion that they couldn't do anything for my condition or pain so I walked away and I had a long talk with my family doctor to see if he would take up the fight. He has been very supportive and we found a way to get around some of my pain, what to do when a flare comes on and learn what triggers them. He's learned a lot about Lupus and other autoimmune diseases. And for the most part it's working out better than I thought. Oh, the ER in my town now knows what to do when a Lupus patient comes in with a full flare crisis. They have treated me twice since that first time and it was a quick response on their part.
Mary, yes we are treated badly by hospitals, clinics, and sometimes in the offices of the very doctors that we hope will help us. The best we can do is educate ourselves and then educate the medical people and in the process raise some hell.
Thank you so much, I just told my daughter what you said and I'm going to look into the OTC med you talked about and see if I can get that for her.
DeleteSorry to hear all that. It does sound like appallingly inadequate medical treatment. I hope the primary care doctor is a bit more helpful on Monday.
ReplyDeleteThank you, I really hope so too.
DeleteI really hope your daughter feels better soon. Sending hugs and prayers for her Mary. <3
ReplyDeleteThat nurse sounds like a piece of work eh. When I was in hospital with my broken ankle, I sadly came across a lot of bad nurses. Honestly about 3 of them were nice out of the whole lot. They really shouldn't be in the job at all if they don't care and are cheeky and horrible to the patients :-(
Right? Seems like there are more bad ones than good ones these days.
DeleteWhat horrible treatment! She may have better luck at a small urgent care that can take time to actually talk with her.
ReplyDeleteShe went to Urgent care at first, they told her to go to the ER.
DeleteI'm so sorry to hear your daughter continues to struggle with her health and is experiencing so much pain. Hopefully she will find doctors that are more willing to work with her.
ReplyDeleteI sure hope so.
DeleteI'm so sorry Mary that your Dear Daughter is going thru so much right now. And you too still recovering from your Fall. It's been a lot... and horrible treatment in an ER at some Hospitals seems to be a Thing now unfortunately. Healing Energies being sent your way for you and your Daughter my Friend.
ReplyDeleteIt really does seem that way. They shouldn't be in that field if they are going to be shitty people.
Delete