great labs, still in pain?? + pain med question!

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misscali
Regular Member


Date Joined Feb 2007
Total Posts : 154
   Posted 3/11/2012 6:39 PM (GMT -6)   
Hi Everyone!

I have a history of kidney failure, multiple deep vein thromboses, pulmonary edema, shingles and have mostly recovered (fingers crossed!) from everything thus far.

However, I have been in chronic pain for years, as I'm sure you can all relate, I have just always been aching since I was diagnosed 6 years ago...especially my upper/middle back. Words can't really describe it besides just...aching, intensely. So much so that there are often times when its hard to get out of bed or I just want to curl up into a ball and close my eyes indefinitely. I have tried acupuncture, physical therapy, massage and diet to help relive this pain and it still persists...

Pain medication has made it easier for me to still live a relatively normal life, I was able to eventually graduate college after being diagnosed my sophomore year, and now able to have a steady job and take care of my apartment, cats and myself, etc. Without it I probably can't stand up long enough to do the dishes without having to take a break and lie down. I have been taking 5 mgs of oxycodone 3x/daily for the past 5 years, but within this last year the pain seems to have gotten worse, requiring me to take more medication, and also pairing it with Tylenol.

The strange thing about my pain is that my Rheumy says it is not disease related because all of my labs are extremely good!! Most of levels are within normal range--except that my HDL cholesterol is extremely low even though I eat very healthy, I still have positive double stranded DNA, and a small amount of protein in my urine. Is it possible for me to still be achy and in pain even though my disease activity is extremely low, and possibly in clinical remission??? Is my Rheumy wrong?

My primary care doc has just recently increased my dose to 10 mgs of oxycodone 3x/daily, but it just got me worried that I am getting too dependent on pain meds and sometimes I have heard that pain medication can actually cause pain when someone is used to taking it regularly, and I was wondering if I should try to wean myself off for a little while and see how bad my back pain really is?

So, my question is whether or not this is a good/bad idea, and if anyone has experience with chronic aches/pain and using pain medication to control it/live a "regular" life? Looking at the bottle full of pills is just a little depressing/overwhelming (especially since they doubled the dose)...and I already have to take so many other medications. These past few days I have been trying to take less by taking 10 mgs 2x daily (rather than 3 times) and I'm in quite a lot of pain..I also have been getting woken up in the morning to stomach cramps and I'm worried that this might be a sign of dependence or something. What should I do??

Thank you in advance!! xx

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 3/12/2012 9:07 AM (GMT -6)   
Has your back been checked for Degenerative Disk disease? I have it and it can get very painful at times.
Joy

misscali
Regular Member


Date Joined Feb 2007
Total Posts : 154
   Posted 3/15/2012 11:10 AM (GMT -6)   
Thank you for you're reply, Joy. I have not been checked for Degenerative Disk disease, but I have had a lot of X-rays. Is this something that can be shown in an X-ray or are different tests needed?

Also, it is more of deep muscle ache/pain, so it does not seem like the pain is coming from my spine, even though it radiates around it...my Nephrologist mentioned that maybe I should get my muscle enzymes checked out because I had been on Lipitor for a long time. Does any one else have this kind of pain??

And what pain management regimen has been most effective for you?

Thank you!

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 3/15/2012 4:27 PM (GMT -6)   
Mine was diagnosed by a MRI of my spine.

I basically baby my spine. My L5-S1 joint is bone on bone rubbing so I can't bend over slightly. I have to keep my spine straight, squat to pick up things, or use a grabber.
I take 15mg of mobic and tramadol. I also use heating pads and ice packs. I sleep on 6 inches of memory foam on top of my firm mattress. I had to go to a PT to be trained on how to move and keep my surrounding muscles strong to prevent slippage.
Joy

Kidz Mom
Regular Member


Date Joined Jan 2011
Total Posts : 142
   Posted 3/15/2012 9:18 PM (GMT -6)   
Has any doctor mentioned Fibromyalgia? You can have Lupus and Fibro and Fibro pain can be very painful at times but nothing will show up on test. With Fibromyalgia you have flares too where you feel much worse.
DD- Lymphocytic colitis 3/13/12, diagnosed with Fibro 1/2011, hypothyroid, hysterectomy in 2009, slipped disc L4/ L5, migraines. Daily: soma, cymbalta 11/2011 amitriptylin added 12/2/11. Lialda 3/15/12

misscali
Regular Member


Date Joined Feb 2007
Total Posts : 154
   Posted 3/16/2012 11:38 AM (GMT -6)   
Hey!

Joy-I do not think I have DDD because it sounds like it would be MUCH more painful than what I am going thru right now, and I'm so sorry that you have to deal with that kind of pain. It sounds really awful. I like to use heating pads sometimes too, but I find that once the pad is not hot anymore or once I take it off, the pain returns :( I have also tried Lidocaine patches but found them not to be very helpful, they only seemed to numb the skin and didn't really reach the deeper aching pain in my muscles. I also went to PT and he just told me to exercise more...I try to have a tennis lesson once a week and then maybe get on the elliptical for 15-20 minutes once or twice a week if I feel up to it, but sometimes I'm just too "lazy" and can't really bring myself to do it. I think I am going to try to be more vigilant with doing yoga to see if it will actually help :)

Kidz Mom-Yes! That is what I kind of have been suspecting, and I had one doctor in college mention this as a possibility, but right now all of my doctors here ruled it out because the pain is concentrated in my mid/upper back area and I don't really have any pain in my legs or any other part of my body. Do you think its possible to still have fibro if the pain is only in my back??

xx
SLE, Lupus Nephritis and Antiphospholipid Antibodies since 2006.
History of 2 deep vein thromboses, end-stage renal failure, pulmonary edema, shingles, costochondritis
Meds: prednisone, plaquenil, cellcept, warfarin, lisinopril, baby aspirin, xanax, oxycodone

kookla34
Regular Member


Date Joined Feb 2010
Total Posts : 31
   Posted 4/5/2012 10:11 PM (GMT -6)   
I wouldn't suggest taking youself off of that medication by yourself. You can def get off of it and I am sure it would help you more if it wasn't taken as often. JUst hard to say. If your in as much pain as your saying your in then what quality of life are you living if you choose to give them up. The dose your qouting 10 mgs 3 x a day isnt that crazy.. to ME atleast. LOTS of people with fibro or lupus that have to take 80 mg of oycontin twice a day and percocet for breakthru pain. Talk to the Dr for sure if you go off of it. Good luck
Steph

Diagnosed SLE since 1995, Lupus anticoagulant, Class 4 Kidney disease, depression, seizures & a stroke.

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 4/6/2012 3:41 PM (GMT -6)   
Miscalli,
The pain isn't horrible all of the time. It's okay as long as I follow the rules of movement. My lupus makes my hands and feet hurt more than it.
Joy
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