Pain Management????

I got a call from my rheumy finally today after waiting three weeks to hear from them the results of my blood tests weeks ago - which I already had in my hand since I work for the hospital - and they said there is some inflammation somewhere and that my ANA came back negative this time (last time was 1:640 where it had been 1:1280).  Well, he doesn't know what could be causing my pain and suggested I keep taking the Ultram which doesn't touch the pain.  I have called my Primary doc and since she got a call from my rheumy that my ANA was negative she doesn't believe I have lupus - even though all my symptoms point directly to it.  Well, long story short, my primary doc won't give me any referrals for a pain clinic and won't give me a prescription for a pain killer either.  I'm at my wits end with this and am in severe pain tonight with no relief in sight.  I'm tired of dealing with the pain every day and my family not understanding when I say I am hurting and I just don't know where to turn or what to do next.  My Mom is usually very supportive today but when I was talking to her today and told her how much pain I was in, I think she was thinking her daughter is a hypochondriac and looking for drugs.  I'm not a druggy or hypochondriac.  The pain is REAL.  It is not in my head.  Any advice would be appreciated.

diane

Diane, I feel for you! It is so discouraging to be sick & no one will listen. Maybe you should try another doc. I went through dozens of docs before I finally found a couple that would actually listen to me. I currently am not on pain pills I just eat bottles of ibuprofen. My doc has told me if it gets worse to call them & they will give me something. I guess I'm just stuborn. I am new to the dx of lupus so I figure it might get worse so I'd better hold out. Your mother is probably really concerned about you & feels very helpless. I have a 21yr old 17yr old & 13yr old. I am very concered about my 17yr old. She is allready having alot of symptoms that I do. You just have to remember your mother is stuck in this limbo too.

Diane, I agree with what redrose just said. After my diagnosis of lupus, my rheumy (and my former one as well) doesn't even look at my ANA anymore.

Hi Diane - That's not good.  I also find that when people don't believe us when we talk about the pain and how bad it is, it adds to the stress and that's the one thing we should avoid (it's almost like a catch-22 here).  The only other thing I can suggest is that you go talk to your pharmasist - they may be able to give you something stronger to help with the pain.  I too had to convince my doc that I needed something stronger because the pain was unbearable - he finally started giving me some pain killers.  To be honest, I can't remember the last pain free day I had but at least the pain is manageable now and I carry on with my daily routine (I still work full time).  It sounds wierd but there is comfort knowing that I do have meds at my disposal when I need them.  Do any of you take Lorazepam or something similar to help with the stressful moments?

I take Klonopin which is also a benzo and haven't had any problems with it or the Xanax that I used to take. I haven't researched the effects of benzos with Lupus however but my rheumy didn't have a problem with it and it doesn't seem to cause any problems.

Thank you for all your replies.  Don't know what I would do without you all here.  You let me vent and complain and you genuinely care and listen.  It is a wonderful comfort.

I'm just finally getting back to the boards today.  I've been working full time plus the past week and still trying to deal with the pain and keep my every day life going and it is a real struggle.  Some days I don't know if I am gonna make it thru work (8 hour days of sitting in my chair and doing medical transcription).  At least I am now working from home doing this so it is one less stress of not having to look great and get out and go to work and deal with the outside world and all my coworkers saying "but you look fine".  It is still stressful working from home but not so much as going to the hospital every day and working from there.  I almost went to the ER last week when I posted this original message as I was already at work at the hospital and figured it would be easiest to just make a trip up the elevator and get some pain relief in the ER.  I chickened out as I didn't believe anyone would think the pain was real and they would just send me on my way.  I'm sick and tired of doctors saying they don't know what is causing my pain and they can't help me out with painkillers cause they can't figure out what "kind" of pain they are treating.  And my sick thinking the past few days is to call my primary doctor and tell her I hurt myself somewhere and can I get a pain killer for whatever pain I can think of to make up so I think she will believe me.  How bad is that?  Calling the doc and faking an injury of some muscle to get a painkiller.  I am in the process with my insurance company to find another rheumy.  I need to go thru the ins. co. cause I can't afford to go off on my own and see a specialist.  I want ins. to pay for it.  They are supposed to get back with me sometime the beginning of next week.

My pain to me seems like the worst anyone can have and I feel guilty venting here about it after what I see some of what you all are experiencing.  Hugs to all of you and hope everyone will soon be feeling better.  We all need a serious "break" from this stuff going on.

Anyone here ever question God about why me and why not so and so or other?  I am questioning a lot these days.

Thanks for all your support and listening and letting me vent.

diane (ocean1)