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Old 01-27-2010, 04:24 PM   #1
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Need Advice

I'm in a real pickle here. Early January my doc changed my meds from Morphine Sulfate ER 30 Mgs 2 x daily with Perc 10/650 1 1/2 x daily for breakthrough pain because they just weren't working as well any longer. I had been on this dose for 2 1/2 years with increasing pain. I have failed back syndrome after PLIF w rods/cages etc due to DDD L4-S1 in May 06. I went back to work 1 1/2 years ago and I have been experiencing alot of pain in my mid back. Alot of burning searing pain. I use a heating pad quite often throughout the day which helps but not much. Early Jan he switched me to Oxycontin 20 mg 2 x daily which wired me out and raced my heart and did nothing to ease my pain. Due the increase in pain, he increased it to 3 times a day. It surprisingly lowered my heart rate but did nothing to ease my pain. Monday he switched me back to Morphine Sulfate ER 30 MGs 3 times daily and I am still in complete agony. I have the most incredible pain from my neck (this is new) all the way down.

I have lost a considerable amount of weight lately with no good reason and have no cushion left-literally on my backside. I had to ask for the rest of the week off because I can't bear the pain and I can't seem to stop crying because of it. I don't cry, that is not me because I don't like the headaches it causes haha. A co worker said before the change she would never know I was in pain because I am always smiling. Now they see me living it. I just don't know what to do. This doc has not performed any tests or anything and that doesn't seem right to me. I can't go on like this in this pain. I can't afford to quit working yet I can't afford the misery of sitting at a desk 8 hours a day either.

On a final note I started getting severe pain in my last 3 fingers on each hand around August last year. Now I have large nodules on my knuckes mainly my ring fingers and I can't knock etc. Constant swelling and stiffness. I had tests for RA but they came back negative as well as an autoimmune disorder panel taken by my primary doc. My point to this is, could the increase be related and I can just see my finger joints? I don't know but I am completely at a loss as to what to do. I have no Neuro as the one from Mayo Clinic released me after my surgery because there was nothing further he could do for me. I saw another one early last year but he too dismissed me because the "hardware looks good". Well goody goody, I'm glad it looks good but why am I in soo much pain??? I have no life outside of working. Can't go out to dinner cuz I can't sit and it's been over a year since I couldn't even enjoy some honey time with my husband. We've been married 5 years. Nice for him huh?

Please, if anyone has any ideas to help me, I truly need it.

Love to all,

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Old 01-28-2010, 04:37 AM   #2
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Re: Need Advice

I think it's time to insist on some tests. It sounds like perhaps it's that the pain has increased possibly caused by something changed or new. You, and the doctor, both need to know where the pain is coming from and it may be that you need a larger dose of medication. You really aren't on all that much, just a bit more than I am on the LA and actually less on the SA, and I know I'm at the very low end of what is used for PM. I know that usually when our meds start not working as well it's likely that it's from tolerance, but we have to stay aware that our condition might get worse or there might be a new pain generator that is adding to the overall pain levels.

Something else you might want to do is have a PT trained in massage or a massage therapist take a look at that mid back depending on what the imaging shows. I sometimes get muscles all knotted up in that area from sitting funny in my chair at work to spare pain somewhere else. Usually my massage therapist is able to work on that and it actually fixes it for awhile. Worst case, you get a nice relaxing spa type massage.


Old 01-28-2010, 11:24 PM   #3
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Re: Need Advice

Originally Posted by tiggertoo2174 View Post
You, and the doctor, both need to know where the pain is coming from and it may be that you need a larger dose of medication. You really aren't on all that much
I agree with Tigg....You're really not on all that much med. Sounds to me like you've got to get back in there and have a heart to heart with your Doc. Sometimes, you have to be your own advocate. In looking back at my own changes over the years, almost all the big changes happened when I initiated changes. Sometimes I have thought to myself where would I be had I not be my own advocate.

I would not wait until my next appointment. Often times when you wait, Docs think your pain isn't all that bad....After all you made it till your next appointment and had it been worse, you would have called. Thus, I would call and get back in there and tell him that the changes just aren't working. It could be tolerance has caught up to you, or that your condition has worsened....Or both.

Either way, you probably need a significant dose increase. Tolerance is a part of PM that must be managed. It's very normal and you should not be ashamed of it. Many people are on very high doses and do just fine. In fact, I know a patient who is on 700mg of Oxy per day. Not a misprint. Additionally, I know someone who is on 3000mcg of fent per day. Not a misprint. And, you would not know either was on such high dosages.

Best of luck to you.



Old 01-29-2010, 06:23 PM   #4
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Re: Need Advice

Dear Need Advice - Wow! It sounds like you are really suffering. I hate to hear of folks who live with increasing amounts of pain yet their docs don't take the initiative to order some diagnostic tests. I understand that you've seen a Rhuemy about possible rheumatoid arthritis and/or other autoimmune diseases and your blood work has come back negative. Don't let that stop you from pursuing this line of thinking. I'm suprised that your doc didn't tell you that a very large percentage of folks with RA NEVER test positive for the marker, yet they still have the disease and all the pain and disfiguration that comes with it. I have RA and scleraderma. I had taken 6 tests for all the auto immune diseases, including rheumy arthritis before getting a positive reaction. If you are experiencing the symptoms of RA and you are having joint swelling, etc., you should seek another opinion and hopefully get on some medication that can actually alter the course of the disease, not just some pain medicine to mask it (although you certainly need a good pain medication). I hope you take the next step and find another pain management doc or orthopedist and a rheumatologist! You do not have to continue to suffer like this. Be proactive and keep looking for answers!! The help is out there. All the best - BrittleBones

Old 02-01-2010, 06:52 AM   #5
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Re: Need Advice

Does sound like RA but since you had the lumbar problems you should have the rest of you spine checked out. Very often if you have a problem in one area you can develope it in another. You said the pain goes all the way up to the neck so the cervical would be a good starting point as it can really effect the fingers, hands & so on.....I dont understand why someone with existing spinal problems is so easily dismissed when its not uncommon for this to occur.
I have times where my fingers will not bend & yes the can be extremely painful. You really need to have the cervical looked at if this neck pain is present. It miserable to have both lumbar & cervical & can feel like your entire back hurts. You can try icing &/or moist heat on the neck just to see if it will give you any relief at all. Also have to consider it may be more then one problem, as often doctors get focused on looking for one cause.

If you dont already Id keep some type of journal or diary & take it in to the next doctor you see. Document every little thing you feel along with anything that may improve or make it worse. I just started on oxycontin not long ago, 20mgs helped for alittle over a week then nothing, we upped it to 40 in the AM & it did provide more relief. I have to say I was put on it yrs. ago & did not respond well to it but this time around is different. I still have days where my pain is not covered as much & I definantly need my breakthrus but the pain is not as up & down as before the oxycontin. We will see how it goes in the long run.

I do feel for your marriage, but keep in mind marriage is through the bad & good. I hear what your saying & I can feel the guilt feeling coming through. Ask yourself would you stick by your husband if your roles were reversed?
I have times I know it takes its toll on my marriage but I also know Id stick by my husband no matter what & have through his ups & downs. Living in CP does not exclude us from happiness & love it just requires each person to be stronger & patient. I cant imagine anyone not feeling some kind of guilt but we dont ask for this pain, just as a person with diabetes does not ask for it. Im working hard on not feeling guilt & when I mentioned it to the nurse at my PMs she actually yelled at me. She said you cant blame yourself for something you cannot control & guilt will never help you in anyway. Hard not to feel that way but we have enough on our plates without adding more.
I'll send up a prayer you get the help you need. Sammy

Old 02-04-2010, 04:00 PM   #6
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Re: Need Advice

Thank you all so much for your advice. I did get a new MRI on Friday. Lumbar shows no changes on this one although it did on the last one-go figure. C-5 Has some sort of bilateral narrowing, degeneration and bone spurs. At least what I could make of the MRI results and looking things up online. I meet with the PM next week to see what if anything will be done. I will give you an update after that meeting. Not having suffered neck pain like this before, I believe it to be far worse than a level 7 back pain. I litterally am shaing by the end of the day from the pain. Makes me feel like my dog looks when it is storming. I am not drooling like her though haha.

Thanks again! You guys are truly wonderful!

Old 02-05-2010, 04:58 AM   #7
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Re: Need Advice

awwww Lisa....I havent' been here for a few days....and look what I horrible for you. I just don't understand can they look at you with the pain symptoms/weight loss and not want to find out what is wrong. I wish I could get out of the house right now...I'd volunteer to go to the Drs. office with you...seriously. You need someone with you when you go to the they can also say...hey, she's having major changes here...LISTEN. When I had my C5/C6 I had pain in my arm/hand/and some well as loss of muscle...arm got really, really skinny...BUT the swelling in the knuckles..well...hummmmmm...could be RA...oldest daughter has RA...and yes, you can have it and not have blood work match. New rheumalotologist may be needed.....and an appt. with pain mgmt...or see what he thinks of new MRI... Thinking of you...take care...

Old 02-05-2010, 06:33 AM   #8
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Re: Need Advice

Well you have a starting point & thats a good thing, better then being clueless. I can tell you what an MRI states is minor can cause some major pain. Not to say yours is minor but I hear that minor to moderate thrown in often yet people including me are in agony. Im not surprised as you already have existing spinal problems & have symptoms something being wrong in the cervical area.

I completely understand what your saying, I have walked in my door after work & went straight back to my room & burst into tears, its truely awful pain to have to deal with. This pain can radiate & feel like its consuming your upper torso & extremities, arms, fingers & so on... I can see why your shaking by the end of the day, been there & done that.

Im curious to see what your doctor has to say. I would not doubt another level is being effected with your symptoms but Im no doctor & god knows Ive learned we dont all fit into one mold. Im happy you have a start & wish you the best of luck. Sammy

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