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Discussion Starter #1
I just got home from the hospital after going by ambulance this morning. I woke up with the most excruciating pain in both my knees. I have lupus, but I only have issues with my heart and lung and malar rash periodically. I've never had an ounce of joint pain. Well, it was like someone shot out both my knees. I tried to walk, but the pain was unbearable. It is a severe throbbing pain, but I get bouts of shooting pain in the knees.


I had to wait two hours before the doctor saw me and gave me something for pain. It was SO cruel. It was not busy; just a bunch of kids running around. I just got out of the hospital a few days ago for pericarditis. I'm on 80 mg of prednisone and they added on indomethecien (which I shouldn't be taking because of blood thinners). My family doctor switched me back to the fentenyl patch, 100 mg for pain. I was taking 18 mg. hydromorphone contin before that.


My blood work came back okay except for my white blood cells were high from the prednisone. So, they sent me home. My husband is livid. I can't walk for the pain. The doctor decided that I was too fat for the fentenyl patch to work, so I am suffering from opiate withdrawal. She ordered Lyrica to help the opiates absorb and it is supposed to help with nerve endings?


I am at my wit's end, Has anyone experienced anything like this before? Why do they treat us like hypochondriacs or druggies? The nurse gave me a lecture about narcotics and choosing a life style where I would need more narcotics!!!! I couldn't believe she was telling me that!!


Thanks for listening.


Nutty
 

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(((Nutty)))

It makes so angry when people get treated like.:screamin:
What a group of ignorant,dumb, idiots they are. (trying not to get censored) They call themselves medical people? I would like to kick their back side. How could that nurse act that way with that lecture about pain meds? Change your life style, :grrr: If only that worked to change our life style to get rid of lupus. GRRRR

You have gone threw so much lately. Could you call your family doctor and tell him what is going on? ( I am assuming that you didn't see him)
How about your rhumey, could you call him?

I am not a doctor but I have a feeling that you shouldn't be going off cold turkey that pain med either. That could cause a whole new set of problems. Could you or your husband call back the hospital and hopefully get a hold of a different doctor?

Please take care and let us know how you are doing. I hope you get some relief. I would report to the hospital CEO about the treatment you have received.

Love,
Lyn
 

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That's just awful treatment - I'm so sorry you had to go through that. Especially the lecture by the nurse about lifestyle choices, etc.

Any doctor should know to *wean* a person off opiates instead of going through/off that cold turkey.

I hope the Lyrica will help you - it certainly has helped many people with pain. Usually neuropathic pain is the type that will respond to it.

My knees get really bad like that too. Usually only one "goes out" at a time though but it is just excruciating doing anything especially BR trips and stairs! I tend to avoid all pain meds at this point myself for various reasons including doctor's reluctance to prescribe anything strong enough to help.

If your pain stays really bad, then I'd strongly recommend going to a pain clinic for treatment. They are the ones that understand that kind of pain, and how to treat it & know how to treat those of us with real pain issues that NEED treatment.
 

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Arrghghghgh!

My wife frequently says that it is a shame but we can't legislate against stupidity. How true.
My late mother had her own saying, one which you, Nutty, might choose to employ should anything along the lines of what you describe happen again:
"My God! I wade knee deep in idiots!"
All the best,
Douglas+
 

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Nutty,

First of all, I hope that you are feeling better now. The pain that makes it so difficult to walk is probably one of the most painful and so cruel. You are instantly turned into an invalid and you are instantly dependent upon someone else.

I too have dealt with physicians and fellow nurses, I am a nurse myself, and have been told that I take to mant narcotics and that I actually do not need them. That is when I wish I had the energy to beat them with a ball bat. I have been humiliated, degraded and I am sure the words could go on and on. I have sat in the hospital and waited and begged for pain medications because I hurt so bad. I have been asked to describe my pain and they tell me that that is not how Lupus pain is or it shouldn't be on one side but both. Then there are times that I am fortunate that I get a get a good doc that knows me and is familiar with my case and he treats me so well.

I am chubby as well and have dealt with people that are chubby so please excuse me when I say that I have never heard of such an excuse. Maybe it is possible, but I don't know. I do know understand that if you cannot take a patch, why they didn't give you some other form of pain pills, etc. I know the Prednisone does help but it is difficult to stay on it long term. I am also on Lyrica which has helped and I also take Cymbalta that also has some pain properties.

Back to the nurses and the docs right quick. I too have been treated like this is my life choice, to have Lupus and suck down as many drugs as I do. My life choice was to be married, be a mom, be a nurse, smoke, vacation in Vegas, buy a big SUV and to sell my old historical home and move to a ranch home. Those are my life choices, not to have a life long disease. I normally sit there and let them say whatever and then when they are done, I normally come at them and speak to them in a very demeaning manner so that they feel completely ignorant. They will sometimes apologize but I know it isn't a real one.

I must say that I am fortunate in that my Rheumy and his nurses are absolutely wonderful. They listen with their heart and they try to help wherever they can.

You need to find a doc that will listen to you and will go above and beyond to find you comfort. You need someone that will be supportive of you. Does you family support you or your friends? I am n ot sure where you live but maybe a support group would be helpful as they woulf have had to deal with simiiar incidents and they may know of a way to get what you want, etc. If you have people that support you and stand by your side, it makes everything easier to deal with. I wish you much luck and good thoughts for a great day. Please keep us posted on how are you doing.


Nancy
 

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Discussion Starter #6
Thanks everyone. I'm doing a little better today, but am still getting a fair amount of pain while resting. The pain while walking (just to the bathroom) is excruciating. I don't understand how you can just wake up like this one day, especially since I have no history of joint pain. I don't think the doctors have any idea either. How can someone feel so bad, but they say my blood work is fine. So, they think I'm making this up? We are at a loss as to what to do today. Something is obviously wrong, but I'm afraid to go back to the hospital. I won't go back to the local hospital, but to the city. I got in trouble for that before too (hospital shopping). We are waiting for my rheumy to call back, but I'm not feeling optimistic about that. As someone mentioned (Nancy?), it is devasting to be walking one day and not the next. I only have my husband and 14 year old to take care of me. My husband is beside himself. He has to work as I am not being paid at the moment. I have to reapply for disability.

He is also going to file complaints with the hospital and the college of physicians and college of nurses for the lack of treatment I received yesterday. When he asked the doctor how he was supposed to get me in the house, she had a smirk on her face and said "call a friend". I feel bad for him. He is in a horrible position too. This really sucks.

Thanks everyone for your support. It really does help. I just wish I knew what is happening.

Nutty
 

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You are going to have

to have bed rest for at least a week.
Dang doctors, they are NOT in pain and have no idea of how we suffer, unless they can see it. I had 3 weeks bed rest and sleepers every night and suddenly my spine stopped convulsing. The doctors could see the convulsing, then they did something. It had done that for 3 years by then.
 

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I am so sorry to hear that you were treated that way! it really is too bad that some people just don't understand or don['t have a heart. I know how you feel, I actually am going through the same knee pain at the moment. It feels like you blew it out or twisted it backward & popped your kneecap or something. Although it still hurts front AND back. I have mine on one knee for a day or two then it switches to the other one. Right now I have that pain in left knee, left middle finger & left thumb. I'm sure tomorrow it will all be on the right side. Even though people say they understand & sympathize, they don't really know what it's like unless they have been there. Unfortunately. I am perscribed percocet, I am allowed 2 per day. My dr. sympathizes & says she understands that I need to take it, but there are regulations & she can actually get in trouble for giving it out too much. I guess they are pretty strict about it. So, eventhough some days I could take 4 because the pain is so terrible I can's stand it, but I know that there might be some time that I have nothing till that month is up, know what I mean? I think unless the dr. really knows you & has been working with you for a while, they don't like to give out a whole lot unless it's something that they can clearly see. Just know that I and others here know that the pain is very real & we truly do sympathize with you. Hopefully your regular dr. can help.
 

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I hope your feeling even better.

Doctors and Nurses who treat patients like this should be shot!:mad::mad::mad:

Too Fat for a patch???? What does that mean??? You were not too fat when they put you on it initially. What are they talking about??? I would be livid! I would also report these people and find a doctor to work with you, not against you.

I am so sorry you were treated like this.
 

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((((((Nutty ))))) Poor baby, this is another example of our "blame the victim" tendencies. Believe me, I've had the "you have to choose to be well" talk too many times. I've heard it from doctors, nurses, a pharmacist and too many relatives/"friends" to count. It's stupid. None of us chose to be ill. We don't allow ourselves to fall into medication dependency. Yeah, our "lifestyle" is so much fun and so rewarding........:eek::huh::blink:

I agree with spending a week in bed. And definitely don't go back to the place where they decided you needed to go through Fentenyl withdrawal. Sadists.

Talk to your rheumy when he calls, tell him the whole story. And rest. Just rest.

Soft hugs,
Sunny
 

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Hi Nutty,

I am so sorry that you had to endure the ignorance of people that have never been in pain... I am sure there time will come... I have suffered with chronic back problems all my life... Even a member of my family has made a very rude coment once when I was down and out.... Well a few years later he put his back out... I dont have to go further ... He now knows what pain is... He is also in the medical profession and is my brother... He has said he is sorry more than once...
I hope you have been able to get in touch with your rheumatoligist...So he or she can give you the help you need... And If I were you and you need to go to another hospital to get the proper care,I would go for it... After all it is you who knows how much pain you are in...
I hope your husband follows through with his complaint... People like that need to be reported so that it does't happen to anyone else.
There are so many wonderful nurses and doctors out there it is to bad you had to get two that treated you with such disrespect...
Take care of yourself... my thoughts and prayers are with you and your family... (((((((((((((((((hugs))))))))))))))))))))))

Love Penny
 

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Discussion Starter #12
Thanks everyone for your support. My rheumy called me at home yesterday and is to call me tomorrow as well to see how I'm doing. He is excellent. He is also going to do the paperwork for me for my insurance that my family doctor wouldn't do.

It appears that the joint pain is from the high dose of prednisone. He said there is nothing he can do to counteract the reaction and it may take weeks before it goes away. In the meantime, he will monitor the reduction of prednisone and lyrica to manage the pain. I'm down to 50 mg of prednisone, but have to be careful because I still have the pericarditis.

My husband phoned the Director at the hospital today and the Director was not happy with what happened. He is investigating and will call us back in a day or two. My husband suggested that I call him tomorrow and tell him from my perspective what happened. I told my husband today about the last two times I was at the hospital, the male nurse treated me horribly and he was there when this episode happened this week. The 2nd last time I was there, I asked him to use paper tape on my hand because I was allergic to the adhesive tape. He said, you'll be home in 5 minutes. Well it only takes me 30 seconds to break out The next time I was sent to the city for a cat scan because they thought I had a stroke. I didn't so they sent me back to the local hospital. When I arrived he said "what did they send her here for; take her home. Well, I had had a severe hypoglycemic reaction and had a massive headache. It took three different shots of pain medication before I got any relief. As soon as I got the last shot, he wanted me out of there. He took the IV of my arm and sent me on my way. I stopped my husband because the blood was gushing out of my arm (I'm on coumadin). My coat was drenched with blood. He grabbed a 2 inch stack of gauze, said "bend your arm". I said hold on, I'm on blood thinners. And guess what he said "keep your arm bent, you'll be home in 5 minutes! So, I have a feeling he was behind the treatment I received this past week. The doctor is ultimately responsible though. And the ultimate humiliation was when I told the doctor I had diarrhea like symptoms the day before, she came back and said she had to do a rectal exam to see if I was constipated or not, because constipation can cause joint pain. (Sorry for the graphic details, but it was humiliating) Yes, I'm still upset about this.

So, we will pursue the complaint formerly and with the College of Physicians and College of Nurses. They need to learn how to act professionally if they want to work in the medical field. We have had many good experiences and bad experiences with hospitals. We've let the bad ones go, but this time was so humiliating, we can't let it go.

Thanks for listening.

Nutty

P.S. I forgot to mention that I'm going to get homecare 5 days a week for an hour while my husband is at work in the evening. I'm too big for our 14 year old to handle. I'm also getting a walker and wheelchair tomorrow, so I can hopefully get out of bed.
 

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Dear Nutty, I just wanted to add my sympathies. Your treatment has been hideous and really warrants a strong complaint, although I doubt if you feel up to that.
X Lola
 

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Thanks Lola. You're right, I'm not much up to fighting at this point, but thank goodness my husband is. He told me this afternoon not to worry about anything; he will follow it through to the end.

Nutty
 

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Update

I'm so proud of my hubby. They had the Director of Nursing calling him to say sorry and they "shoulda" treated me better. The doctor apparently said that she had an after thought that maybe she should have given me some respite! And hubby said "sorry I'm not taking that as a response." He then filled this person in on what happened and said he has followed my health for the past 2 1/2 years and we've had both good and bad service. What they did to me was creul and he will not accept their response. She is reinvestigating the matter. I don't know if we will hear from her again or not, but he told her he was ready to report it to the College of Pysicians and the College of Nurses. Most days I don't know where I would be without him by my side (although he does have his moments too :shrug: which he admits)

Nutty
 

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I'm really sorry to hear what has happened and the way you have been treated is disgusting... It's lovely that you have got such a supportive husband I have too so I know how much easier it is!

I had trouble with my Mom a few years ago with the way she was treated it was under completely different circumstances as she had cancer and had been mis-diagnosed unfortunately due to lack of empathy and care from the hospital my Mom did not make it. Although I have been ill myself I fought it to the very end through the courts. I eventually won my case and the GP was struck off, its no compensation but gives me some kind of satisfaction and I done it for my Mom there was nothing else I could do for her.

I don't want to give my life story and as I say it was completely different circumstances and i'm sure it would bore you all!! LOL.
All i'm saying is good for you for taking it further its alarming the amount of people who complain but then get a phone call and patients say oh ok apology accepted and the medical staff are left to get away with it?

Good for you and your husband you take it all the way, its people like you who make the health service a better place.

Good luck and i'm sending you all my best wishes. x

(sorry rant over don't know if you've guessed but its a bit of a sore point with me! :hehe:)
 
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