anyone else find pain management to be a pain?

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hurting
Regular Member


Date Joined Jun 2008
Total Posts : 59
   Posted 9/29/2008 3:12 PM (GMT -7)   
ok...so i was diagnosed w/fibro over the summer.  had a bad flare that lasted over 2 months.  it was brutal...lasted most of the end of summer and into the school year...very depressed, anything i did exhausted me and my meds took the edge off at best.  i am really never pain free.  i also have back issues, which is why i started PM to begin with.  i'm feeling better with the flare "gone", definitely, but have never been offered any meds FOR the fibro.  is that odd?  at my last appt., doc said he was going to begin tapering me off my meds.  smhair    WHAT?  shocked my question is...should i contact my primary and get his take on it, see if he'll treat it and get out of "pain management" (that is yet to happen...management of pain)?  how do you go about doing this?  i've felt so on edge since entering PM...i feel like a criminal i hate it and i'm tired of feeling "guilty".  getting my meds refilled always seems to be a hassle which doesn't help the anxiety.
thanks for any advice.
Degenerative Disc Disease, bulging discs (3) in low back, fibromyalgia, depression, anxiety
 
 
"The most important work you and I will ever do will be within the walls of our own home."
--Harold B. Lee
 
"We are human beings, not human doings.  Be in the now."
--Sarah Susanka
 


Piercings
Regular Member


Date Joined Aug 2008
Total Posts : 326
   Posted 9/29/2008 5:10 PM (GMT -7)   
Yes, I would do exactly that. From the sounds of it you may have a good relationship with your primary and you might want to explain to him that you never felt that it was fully treated, that it was undertreated, and now that the PM doc is talking about tapering that you are afraid that you're going to lose your quality of life. Explain to your primary how it is that the getting off of the meds will impact your daily functioning, what it is that the medication allows you to do that you were unable to do before PM.

This is something that I've been discussing on another thread here in fibro because the PM wringer is not fun. I grant you that, but sometimes it's necessary to go through these things to have the quality of life that you do. If you feel that the meds help you in your functioning, then you need to show the benefit to your primary, and that will help him to advocate for you either with the current PM doc or by assuming the prescribing responsibilities himself.

Sue2z
Regular Member


Date Joined Jul 2008
Total Posts : 368
   Posted 9/30/2008 1:59 AM (GMT -7)   
I have to go to see pain management this week and I always dread it, afraid he will take me off meds though he has no reason to at the moment but I hate having to prove and justify everything to both the doc and pain management.  Doc or primary I think you call them their [im in australia] can offer the same meds just about, if your doc wont medicate the fibro you will have to find one that will, even if you just ask him for temp treatment in mean time.   sue2z

Fibromyalgia, ulcerative colonitus, arthritus, bi-polar
norspan patch, valium, prothiedon, lyrica


hurting
Regular Member


Date Joined Jun 2008
Total Posts : 59
   Posted 9/30/2008 5:24 AM (GMT -7)   
thanks for the advice...i'm nervous about the whole thing.  i hate that i'm dependant on these things, and just trying to come to grips w/ the fact that that's just the way it is and the way it's gonna be.  i just hope my primary is a "believer" in fibro.  i don't know how to ask him...maybe call the office from another line and ask randomly if he treats fibro.  what a joke, right?  have to go "undercover" so that you don't have to get "the look"...you know the one one...the "there's no such thing as fibro and you just need counseling" look. rolleyes
Degenerative Disc Disease, bulging discs (3) in low back, fibromyalgia, depression, anxiety
 
 
"The most important work you and I will ever do will be within the walls of our own home."
--Harold B. Lee
 
"We are human beings, not human doings.  Be in the now."
--Sarah Susanka
 


Sue2z
Regular Member


Date Joined Jul 2008
Total Posts : 368
   Posted 9/30/2008 6:18 AM (GMT -7)   

Ive had two docs and a rhuematologist beleive it or not who told me no such thing existed however they, the docs gave me some med as a temporary thing, my pain specialisst specialises in fibro but he is close to retirement and that really scares me.  If they dont beleive you just remember they didnt beleive me either.  If I ever had to see another rhuematologist I would ask there receptionist if they know whetther they treat fibro.  With a norm doc it is just pot luck but still you should have you immediate symptoms helped.

Your not alone for sure....  I hate needing the drugs but I cannot manage without them , the pain is just to bad, and everyones pain is different , some people get by with less, some unfortuantly need stronger and I wish I was the former     sue2z mad mad cry cry


Fibromyalgia, ulcerative colonitus, arthritus, bi-polar
norspan patch, valium, prothiedon, lyrica


hurting
Regular Member


Date Joined Jun 2008
Total Posts : 59
   Posted 9/30/2008 7:27 AM (GMT -7)   
i made an appt. w/ my pcp. please wish me luck. i hope that i can just be treated there. my anxiety is off the charts...i worry every day about my last appt. it boggles my mind and it's pretty terrifying.
Degenerative Disc Disease, bulging discs (3) in low back, fibromyalgia, depression, anxiety
 
 
"The most important work you and I will ever do will be within the walls of our own home."
--Harold B. Lee
 
"We are human beings, not human doings.  Be in the now."
--Sarah Susanka
 


tyno3
Veteran Member


Date Joined May 2008
Total Posts : 1081
   Posted 9/30/2008 10:43 AM (GMT -7)   
I have been in pain continuously since 2002. Even though I get some pain meds, and they make it possible to function minimally, they don't take all the pain away. Prior to 2002, I'd been managing with amyltriptilene, at bbedtime and OTC tylenol, occasionally my PCP would prescribe Flexeril, but we both knew it was for short term management cause Flexeril loses it's effectiveness over time. I was having a lot of  root canals done around that time and I noticed the stronger Tylenol 3 would make me feel better, all over (reduced body pain). When I told my PCP at the time about this she said tylenol 3 was not intended to help with Fibro, that only amyltriptilene would help. So she suggested I take the amyltriptilene earlier as well as at bedtime. The only problem was, bedtime arrive within two hours of taking the earlier dose and I was a single mom with a seven and a nine year old, sons. They didn't like Mom coming home and falling asleep. Neither did I.Somehow i managed to keep working 2, 3 jobs, look after them, etc. Then in 2002, while crossing in a crfor pain meds. osswalk, at the light, I was hit by a truck. That's when the real pain management challenges started. I was flat on my back, unable to work and in pain. So, now, with the additional injuries, I was finally deemed a candidateor pain meds. So, as I took them as prescribed I noticed the all over body aches, were somewhat diminished by these meds. So for me, a combination of tylenol 3 during the day and amyltriptilene at night worked. I could move my body. As far as then until now, well, I have been made to feel like a criminal by all but one of my doctors regarding refilling prescriptions. As I get closer to the next visit, I begin to get antsy. I hurt all over, I'm always running out a couple of days early, so for about five days each month I'm in really bad shape. 

Sherrine
Forum Moderator


Date Joined Apr 2005
Total Posts : 17094
   Posted 9/30/2008 11:12 AM (GMT -7)   
This is exactly why I only see one doctor.  He will help me.  You get more doctor's in the mix for fibro and that can get touchy.  I do see a separate gynocologist and gastroenterologist for Crohn's but everything else goes through my internist.
 
I'm not sure if you can be pain free with fibro.  I haven't been pain free in 21 years but I do have control of the pain and I don't take strong meds that make me goofy...at least not any goofier!  yeah
 
Sherrine
Forum Moderator/ Fibromyalgia
***********************
Fibromyalgia, Crohn's Disease, Ostomy, Diabetes, Autoimmune Inner Ear Disease, Osteoporosis
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
God does not give us a spirit of fear, but of power and of love and of a sound mind.    2 Timothy 1:7


Piercings
Regular Member


Date Joined Aug 2008
Total Posts : 326
   Posted 9/30/2008 1:25 PM (GMT -7)   
There unfortunately is a great debate in the medical community whether pain meds should be prescribed for fibro or not. Some doctors say it's only a case of better nutrition or more exercise and some say that they very much believe that some fibro patients do need them.

I very much am a believer in having them available as an OPTION. Do I think everyone should be on narcotics...? No. But, I do believe that people are entitled to a decent quality of life and that if they have an improved quality of life with them and their doctor is in agreement, that they should be able to choose so. As well as their doctor should be able to prescribe without fear of repercussion from the DEA.

I've been on and off of narcotics for this. During the warmer months I'm usually able to slowly phase out the pain meds as I hurt less. During the coldest months I'm usually going back onto them. Some people are able to get by with none at all, and some are able to get by only because of them.

If you can find a good doctor to develop a relationship with then you're more likely to get much more consistent treatment. And especially with all the suspicion that seems to be in pain management, the longer that you are with a doctor the more of a trust that they develop of you. It's not easy to find a good doctor that you can have that kind of a rapport with, but when you get one, it is soooooooo worth it.

Sue2z
Regular Member


Date Joined Jul 2008
Total Posts : 368
   Posted 9/30/2008 9:38 PM (GMT -7)   
I understand your fears , I am so the same.  Even with my doc who has treated me for three years I get sick and stressed a couple weeks before and worry terribly that something will change.  Hopefully if your doc is good you might be able to stop the fear,  I wish i could.    sue2z

Fibromyalgia, ulcerative colonitus, arthritus, bi-polar
norspan patch, valium, prothiedon, lyrica

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