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Hi everyone. Hope that you are all having a pain free day or a better one even.

I am on Predn. since Thursday ask the rhemo on phone if I can taking something for pain - because severe - now I can't take much and I know what I have tried...... he says pain meds will not help athritic pain. What does that mean? Lupus is athritic pain and he said the steroid will do that. I understand that they are hesistant for people to get pain meds ...but when you have me...who hasn't asked for a refill on darvocet in a year....and still has them... you would think you know by now when I ask it is severe. So I call my gp on Friday tell him, he says does the rhemo think Lupus related? Ummmm I guess since he gave me pred and on phone....he says well 24-48 hours you should feel better just take motrin 800..... I tell him I am ready to jump off a bridge, he says don't do that, I say the pain is way to severe, I cannot take it anymore, been like this for 1 week now.....and well, take advil and we can send you to another rhemo if you want if you aren't feeling as though he is helping.

Good I could but where? none in my area here....... so I get off the phone and pour the bottle in my hand and was going to down a bottle of advil. I didn't of course because I don't want to die, or kill myself, just wanted the pain to stop. So I took 4. Nothing. Well today is day 4 on pred and I feel somewhat better and am taking aleve 2x a day instead which kind of helps a little. I am just so aggrivated that when you say you are in severe pain.....why the heck do they not understand? The pain can get to your brain and make you just crazy, unbearable, unfunctionable, desperate and not think clearly. I mean I had visions of taking a hammer and banging my hands and smashing my knees. I don't know why that sounded tempting, but it did. Maybe in your head you think you can smash open the pressure and it will feel better? I don't know.

Just frustrated. What does it take to get help?
 

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Hi Paula,

I am completely baffled by your doctors attitude here. I really do not understand the mentality and logic behind his statement. I am annoyed too.

I am sorry that your dealing with this. I wonder if you could turn to your GP for something to help with pain or even another specialist you may treat with...Neurologist, etc...???

I wish there was something I could do to help you. Have you been on pain meds in the past? If so, why on earth would they stop them now???

Are you in Europe or USA? I am asking because I have heard in Europe sometimes you can get things over the counter that in the US you need a script for but I am only going on hear say as I don't know if this is true.

A warm bath may help calm things a bit and Advil/Motrin always helps some. I am just so angry that you need to suffer...........it is ridiculous!!!!!:mad::mad::mad::mad::mad:
 

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Pollianna
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Hi Paula, I do think that in the eyes of the docs pain is something we must learn to live with. Iv'e come to believe that they don't see the pain as anyhting other than a symptom if that makes sense. I have had no pain relief meds other than those nsai but i won't take them because of what they do to the tummy. I usually get by by taking the edge off with paracetamol and asprin combos but I know that's safe for me to do. i don't know what one does on steroids. Hope it passes soon xx
 

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Hi,
Have you ever gone to a pain specialist? That might help you.
It is hard when we are in so much pain. Are you sleeping ok?
Love,
Lyn
 

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First, I do not understand the concept that if it is arthritic pain then pain meds won't help? HUH!!! The brain does not differentiate that pain is joint, is caused by arthritis, pain is pain.

When I was having problems with increasing pain, and migraines and not getting the relief I needed from nsaids, my solution was this: I went to my pulmonologist who also acts as my primary doctor and told him that I was tired of feeling that I had to "beggar" myself to get rx pain meds. He and I agreed that he would be the ONLY doctor who wrote pain meds. In exchange, I get them from no other doctor on the team.

The exception has been post op when they are prescribed by the surgeon on leaving the hospital.

This has worked well for us for 15 or so years. If I need a refill between times, I call him and go get it at his office. I am down to routine follow up visits about every 3 months.

I am limited to this med (demerol) as I am allergic to all the opiates natural and synthetic, darvon/darvocet, and due to a bleeding problem, cannot do any aspirin type compound. We have tried.....believe me.

Perhaps you will have good luck with your doctor using this approach. It makes every other doctor happy to know we monitor this and are taking care of it.

Just a thought...my rheumatologist has recommended that I take a over the counter, glucosamine/chondroitin/MSM twice a day. This has given me so much more comfort from joint pain. I can tell if I miss just one dose. I was amazed that it worked so well. So, maybe ask your rheumy if this is an alternative addition for you. It doesn't matter if I use a name brand or a store brand. It is much cheaper for store brands and I stock up when they have the 2/1 sales.
Good luck,
Sally
 

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Paula,


I am always appauled at what some doctors say and do. You would think that in this day and age and with all of the research that shows pain medication helps so many people. I get so angry. As a nurse, we went over new pain identifiers and to not judge a patient when they were in pain by what we thought but by what they said, There were different scales of 0-10 to measure by and that is how we treated each and every patient. I know there were times that I gave pain medication to someone who probably didn't really need it in my opinion, but who am I to judge someone elses pain. I don't want someone judging my pain. I am so sorry that you are going thru this Paula. Maybe you could talk to your primary doc and explain the situation and maybe he will get you some relief. You should not be suffering.


Nancy
 

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The Other Illinois Tammy
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Paula,
I am so sorry that you are having to go through this. I have ra and I have pain pills and muscle relaxers. I am not sure why your rhemo is telling you that pain pills don't help arthritis as mine completely understands the pain and is willing to give me pain meds for comfort as needed. Yes, you can develope arthritis with lupus as joints swell a lot and often to cause arthritic joints. I do hope that you feel better soon and if it were me I would be letting the rhemo know that you know pain pills will help the pain so that you would like some for when the pain is to much to handle. Be well and feel well.
 

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I am hoping that you have had some improvement by now, constant pain can really drag you down. I am suprised by your doctors attitude, it is well documented how disabling chronic pain can be. Sorry that you have had to endure such an unhelpful doctor. Hope you feel better soon.

Deb
 
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