Lupus pain

While attending nursing school the main thing we learned is to treat ur patients pain… For some reason after visiting two doctors I still CANNOT get a pain perscription. It’s very frustrating and makes me want to just stop taking my meds all together. Like if the doctor doesnt want to help with my flare pain why should i take any other meds they give me? I know that sounds kinda juvenile but I feel like I’m at the end of a bridge. Anyone going through a flare knows how hard it is day to day. And to not be able to get anything for pain on top of that just makes u want to jump off that bridge. Has anyone else experienced problems with their pcp or rheumy regarding pain meds?

Go to a Pain Mgt Dr I got a Rx for Methadone. The Pain Mgt Dr said taking this in the dosage ordered is better than taking NSAIDS. 5 Mg 3 x a day. I've heard cannabis relieves pain but don't like the taste

Draginfli- They havent offered anything. I have a script for naproxen but to get any type of relief I have to take a lot which isn’t good for my organs.
OC GAL- how do you go about getting a pain doctor. I know there is a clinic in my town but I’m sure you need a referral from a doctor to go.
Thx for your replies… I appreciate them!

I have had problems getting any help with pain managment. I have been having flare after flare since November and just got a persciption for pain meds two weeks ago. I still felt like they thought I was a pill chaser. I have rarely had pain meds and when I have I have never taken more than perscribed. It drives me crazy that I am made to feel bad for asking for help when the pin gets overwhelming.

Pain...not pin

It took me two years to get pain medication and that was after i made a comment about throwing myself in front of a truck. My Primary doctor was great but he was not a rheumy. I had a terrible rheumy, barely looked at me or listen, he just stares the computer screen and typed notes. My primary recommended his wife, who was a rheumy but i couldn't switch because she was not in my network. Eventually, I was able to see her and it made a world of a diffrence. So keep talking, also i recommend you see a pain management doctor. Because of a few people abuse that abuse pain meds it makes difficult for people like us ,that truly need the drugs to function. Doctors are afraid to prescribe pain, asia64

Oh how well I know what you mean, my rheumy told me to take extra strength tylenol for it, when they used to give me tylenol 3. I am not looking for a high or anything like, Lord knows that the medicine give does that by itself. But we as lupus patients should be allowed to have something stronger for our pain. They have given me Tramendol, but it dosen't help. We say Lupus sucks, but some of the rheumys suck also. Many blessings and hugs.

Yeah. I need prayers!!! I have an appt on the 18 th with my rheumy and I’ll ask for a referral. If she won’t then I think it’s time to change docs. I already have to change my pcp. I just want to be able to have a doc I can actually feel comfortable with and they can help when I need it. It’s nice to know that I’m not the only one going through this as sad as it sounds.

It’s sad that depends on the insurance u have. Everyone should be treated equal!

Ann A. said:

I spent years experiencing unnecessary pain because neither my PCP or my orthopedic surgeon would refer me to a pain management physician. It turns out that I had not done a very good job with my self diagnosis. Most of the pain I was having did not come from the lupus - which is why the rheumy didn’t have a clue how to deal with it. Some of the pain came from arthritis in my spine (Spondylosis), some came from arthritis in my sacroiliac joint and my most severe pain - the deep pain in my long bones - was the result of severe vitamin D deficiency. Over the past several years the pain management physician has helped me work on each cause of pain. He is amazingly patient about listening to me describe my pain. He is amazingly accurate in figuring out what is causing the pain - as you know a nerve pinched in one area of the spine can cause pain a long distance away.

Some pain management physicians will require a referral but not all of them will. So if there is a pain management clinic in your town give them a call. Sometimes the biggest question is whether your insurance requires pre-authorization. My PCP held me hostage as long as I was in an HMO that required pre-authroization. But once I switched to a PPO and there was no gain to him from keeping me from seeing a specialist, he quickly gave me the paperwork that I needed.

I am now in the process of tapering down on my pain meds.

At least arguably, failure or unwillingness to treat pain is widely considered malpractice. I doubt there is anyone in this forum who hasn't had problems with a PCP over that issue. I'd suggest that you take a "kick ass and take names" approach, schedule an appointment with the doctor, and pose him two specific questions: "Why have you refused to treat my pain? What will it take to convince you that refusal to treat pain is medical malpractice?"

Then see where you go. My guess is you'll need a different doctor, much as others have suggested.

Regards, Red

Ann WoW I just found out I have a Vit D deficiency & started on 5,000 IU day for a Mo, then 3,000 & 2,000. The Dr who did a Vit D level told me Ca pt's have low Vit D levels also SLE pt's. I know my blood Ca was low & I had to go on Calcitrol. Noone should have to suffer in pain from SLE. I have a woman Rheumatologist.. I've had bad luck with male Dr's. I think since Lupus is mainly a women's Dx they don't take women's complaints as seriously. You have to be assertive to get the care you deserve. If your pain isn't managed go to a pain mgt Dr

Ya I understand it but we have to take the meds in orde to get Rid of our Pain As this disorder cant be cured in a day

like wise the pain cannot be over came within a week or month time

I have to say that even when I get some pain, it is usually localized, like a wrist joint feels like someone stabbed me with a sharp knife, and I can usually ignore it, or if I can't ignore it any longer, I can kill the pain with Ibuprophen, or Aleve. Aleve is my favorite pain killer. Have you tried it? I figure you probably have. When I first went to my Rheumy, he asked if I needed a prescription for pain. I figured anyone aware of what Lupus is would be aware that the patient might need pain meds.

I take Lyrica at nite, it helps me sleep and takes the edge off of the pain.

Hi barbie88, welcome to the family online for living with lupus!!! Dealing with this Lupus stuff really does take a toll on us daily, and people really don’t know the half of what we go through (pain) . So just put on your shoes and let’s fight ,LUPUS!!! Yes we try not to ask for the pain meds, but we need them . My pain /flares happen mainly when it rain -and the only thing that I can do is stay in bed. It really has changed my life so much . I don’t want to go anywhere!!! Friends and family try to comfort me when I get in depressed mood , but of course I try not to let that depression override me, and make myself just do something while am just sitting around the house . I haven’t been able to work since 2008 ,which I really hate . Not able to hold things in my hands or stand for any period of time (I was a waitress for 20+years) , so yeah I can relate to you and how you are feeling. So just bare with everything and keep your Faith strong …Beverly L…

I thought it was just me not being to hold things in my hand for a few minutes but I guess I am not alone. I work at Babies R us in the clothing section and had a hard time tagging the clothes with security tags because I couldnt hold the pins in my hand and do everything at the same time. The rite hand with the pins froze up and the fingers would not move, ouch so I had to stop working in that section and go back to selling carseats for four hours a day. Before Lupus I would work 8 to 10 hours a day,. I love my work, I am just afraid that one day Lupus is going to get the better of me and I will not be able to do this forever!

Hi there haitianbarbie88, You are so right, part of taking the nurses pledge is to relieve suffering and to administer to the sick. I was also a Registered General Nurse, and it wasnt allowed for anyone to be in too much pain, I do think nowadays though they have gone the other way with all these pain clinics and alternative methods, and havent realised that sometimes although its good to try and treat pain with other methods, there are times when other coping strategies just dont work, so meds have to come into things. I really really feel for you right now. I have been through similar myself, and its so frustrating, it makes us feel as though we are being treated like some junkie, who just wants the pain meds for a high, and not for alleviating serious pain. Fortunately not all doctors are like this, you have just been very unlucky. I have a pain clinic doctor on my back at the moment who doesnt even know me saying i should stop this medication and that medication. Well when i went to see my Rheumatologist, he was fuming, he said, the trouble is that these people like pain clinic doctors have to be seen to be doing something and try to be getting people off of the tablets, and going onto natural ways of getting rid of pain that they put everyone in the same catagory, and also he said, as with you, meaning me, he said that basically this woman is just undoing all the good work he the Rheumatologist has done in getting me to a point where i was just about coping on the pain meds i was on. So now i have gone cold turkey with one med, which my Rheumy was fuming about, but there was nothing he could do about it, as she went above his head about it. Anyway he wrote me a script anyway for times when i am feeling really in agony to have them the extra pain meds in the drawer for emergencies. It really does depend on who you go to, and yet it shouldnt. I am not surprised you are feeling the way you are at the moment. I wish i could just wave a magic wand and get rid of the pain from everyone who is really suffering at the moment. Hang in there, you will get there. I am so sorry this is happening to you, it should never happen, its the oppposite of care as far as i am concerned, its more like making someone suffer for no good reason. Is there another doctor you could see. Keep trying until you get someone who does understand. If necessary, show emotion, trouble is we act so strong sometimes, we dont show how we are really feeling when we ask for these things, let yourself cry if needs me. I am sure you must feel very tearful, sorry i dont mean to upset you, i am just saying perhaps if they see how upset this is making you, as in you are in pain and you are at your wits end through it all then maybe one of them will have to listen to you. I really do hope so, i will keep everything crossed for you, and pray that you get what you need to help with the pain you are in, let me know how you get on. Take care, bye for now, love and hugs Astrid40xoxo

wow! I just read the part about having problems holding things & standing for any length of time …I have just started having this problem over the last three months. like, sometimes I cannot even hold a coffee cup. I thought maybe I was just a reject sle patient cause my Rheumatology Dr doesn’t say anything when I told him. I have all these crazy things going on in my body and for the first time since my diagnosis I’m scared. how long do we normally live with this disease? does it eventually kill us or just debilitate us & cause us to be in such pain & misery that we just wish it had killed us? I can’t hardly function most days & my rheumatologist says it’s impossible to get ssi disability for sle …in pain worried & giving up hope

I have pain in my hands and arms. My rheumatolgist prescribed pain medicine that only got rid of the pain temporary. I said, I can't live with pain so I went to pain doctor. He prescribed a low dosage of methadone. That medicine got rid of the pain. I believe you answer is to go to a pain specialist.

You are in my prayers.

Hay that's where i am at this moment , and i hate it very much ... I Love working and it' like am helpless and dependind on people for just about every move that i make has really beginning to bother me deeply . But of course my family has no problem with helping me to handle things that i can't do myself . But the point of this all is , Hang in there , and keep the Faith and pray that someday there will be a cure for this Lupus stuff..... Beverly L.

LupusSucks said:

I thought it was just me not being to hold things in my hand for a few minutes but I guess I am not alone. I work at Babies R us in the clothing section and had a hard time tagging the clothes with security tags because I couldnt hold the pins in my hand and do everything at the same time. The rite hand with the pins froze up and the fingers would not move, ouch so I had to stop working in that section and go back to selling carseats for four hours a day. Before Lupus I would work 8 to 10 hours a day,. I love my work, I am just afraid that one day Lupus is going to get the better of me and I will not be able to do this forever!