Pain Management????

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Veteran Member

Date Joined Dec 2006
Total Posts : 708
   Posted 5/8/2007 7:13 PM (GMT -6)   
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.

Veteran Member

Date Joined Jan 2007
Total Posts : 610
   Posted 5/8/2007 7:36 PM (GMT -6)   
Sorry to hear about your frustration. Since you work for the hospital, can you get in touch with the docs over there and discuss this with them? Also, I would see if I can get a second opinion. It is quite a hassle when in pain but find nothing.

Regular Member

Date Joined Jul 2006
Total Posts : 245
   Posted 5/8/2007 10:09 PM (GMT -6)   
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.

Veteran Member

Date Joined Sep 2005
Total Posts : 2573
   Posted 5/8/2007 10:27 PM (GMT -6)   
ANA results vary so much and often change like the weather. My hubby went way positive when he was baddly inflammed but a few weeks later when a new test was done and the inflammation was down to normal amounts his was negative. The ANA is not the end all be all test. I recommend new doctors.
Dx:fibromyalgia 2002, systematic lupus 2005, psoriasis 2006, rheumetoid arthritis 2006, early sjogrens 2006, low positive anti-phospholipid antibodies/lupus anti-coglutant 2001-2004 and 2007, osteoarthritis 2005, Migraine 1994, Compression fracture 2001, Disk problems 2006, Multiple allergies 2006, Post traumatic stress disorder (PTSD) 2007, Bipolar type II 2007, possible siezures 2005

Tx: plaquenil, Imuran, Enbrel, Celebrex, Tramadol, Norco, Singulair, Skelaxin, Evoxac, Clonazepam, Zonisamide, Baby Asprin, Relpax, Copper IUD

Veteran Member

Date Joined Mar 2006
Total Posts : 2608
   Posted 5/9/2007 12:31 AM (GMT -6)   
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.
Lupus, Rheumatoid Arthritis, Sjogren's, osteoarthritis, fibro, ibs, renauds, restless leg, hiatal hernia, double vision.

cellcept, neurontin, prednisone, plaquenil, synthroid, triamterene, cymbalta, tramadol, lunesta, actonel, meridia, tricor, aciphex, multivitamin, calcium w vit D, fish oil, aspirin

Regular Member

Date Joined Jan 2007
Total Posts : 279
   Posted 5/9/2007 5:35 AM (GMT -6)   

Sorry you are in pain. It's just awful to drag yourself around in pain trying to get things done. I'm with Pat, my rheumy doesn't even look at my ANA anymore. I even asked if they would ever test it again and was told it was for diagnostic reasons only so there was no point.

Second opinions are annoying to seek (gotta get over the inertia of going to the same doctor) but I did it last fall and it saved me. Keep looking until you find someone to listen. My first rheumy didn't but my PCP did and got my pain under control while I was searching for the second rheumy.

Hang in there.
Stay Strong,
Diagnosis: Mixed connective tissue disease (systemic lupus, scleroderma, polymyositis), Raynauds phenomena (both diagnosed in 2006)

Meds: prednisone (5.0 mg wish I could taper), Imuran (2X50mg), Prilosec (20mg), Prozac (off now)

Regular Member

Date Joined Apr 2007
Total Posts : 104
   Posted 5/9/2007 6:06 AM (GMT -6)   
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?

Regular Member

Date Joined Oct 2006
Total Posts : 221
   Posted 5/9/2007 9:28 AM (GMT -6)   
Be careful with Lorazepam.... it helps stress, but makes pain worse. It took me eight months to wean of a very low dose of Lorazepam. Stay away from all benzodiazapenes, they arent worth it.
Mother of four, full time Systems Analyst
Sjogrens, Crohns, suspected Lupus, Pancreatitis Dec. 2005
Meds:  Medrol injections; Darvocet, starting Plaquenil in Feb.

Veteran Member

Date Joined Jan 2004
Total Posts : 4151
   Posted 5/9/2007 9:53 AM (GMT -6)   
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.
Co-Moderator ~ IBS Forum
Dx: IBS 1989, Diverticulosis 2004, Idiopathic Acute Colitis 2006, UCTD 2007
Meds: Plaquenil 400mg, Chlorzoxazone 500mg, Lyrica 50mg, Protonix 40mg, Naproxen 1000mg, Xanax XR 2mg, Miralax 17g, Supplements

Veteran Member

Date Joined Jul 2005
Total Posts : 5403
   Posted 5/9/2007 4:04 PM (GMT -6)   
diane, I am sorry about what you have been through and that you aren't getting much help. My doc is like Patty's and doesn't even test my ANA anymore. I was told that a positive ANA is a positive ANA and they don't need to keep testing it.

I had my own rant about pain management the other day because I do believe that people deserve to be as comfortable as possible within reason. I agree that you may need to see another doc who would be more willing to either treat your pain or refer you to a pain doc.

It's bad enough to have untreated pain, but to have untreated pain and to have people not believe how bad it is can be very upsetting.

I'll be praying that you get the help you need to get relief from your pain.

Take care
Diagnosis:  UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; CFS 1991; Mono 1985
Meds:  Plaquenil 400mg; Prednisone 5-10mg; Tramadol 100mg 3-4x daily; Amitriptyline 10mg; Neurontin 300mg; Prevacid; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Restasis eye drops



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Co-Moderator: Lupus and CFS Forums

Veteran Member

Date Joined Dec 2006
Total Posts : 708
   Posted 5/16/2007 10:09 PM (GMT -6)   

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)


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