Questions for those of you who are on extended release narcotics....

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JennyBHurts
Regular Member


Date Joined Jun 2009
Total Posts : 23
   Posted 7/14/2009 8:59 AM (GMT -7)   
I have finally found a med combo that works for me. Unfortunately for me, there is so much stigma about long-term narcotic usage that I am afraid I won't be able to be on it much longer. I take 30 mgs. Oxycontin 3 X's a day and 25 mgs Elavil at night for my fibromyalgia, and I am 90% better than I was a month ago!!! My whole body pain is much improved and the fatigue/flu feeling has been gone since I started the Elavil (amitryptiline) 3 weeks ago. I saw my primary care doc last week, and she asked if I was ready to start weening off the Oxy (I have been on it for over a year). I am NOT READY! I have no side effects from it other than constipation (that is managed by diet and stool softeners). I can drive, work from home, clean my house, be a mom....you basically would not know I was on such a strong pain med unless I told you! I take it exactly as prescribed, and sometimes I even have meds left over at the end of the month because I didn't need it! Addiction is not an issue with me, as I get no "high" from it at all, just pain relief. I am afraid that I finally found the magic combination and now it's going to be taken away from me and my life is going to go down the toilet again. My doc mentioned that if I get bad again while I am weening off the narcs, we can try Lyrica. Honestly, I have read a lot of really crappy side effects from Lyrica that I don't have with Oxy. So if the meds ain't broke, why mess with them just because they are narcotics?




So, I was wondering how many of you are on long-term pain meds? How did/does your doctor feel about treating fibro with narcotics? I know that you can build up a tolerance, but since I have been on narcotics for over a year, wouldn't that have happened by now? I want to talk to my doc about my concerns, but I am so paranoid about looking like I am addicted or drug seeking or something. She totally trusts me, but I still worry.



Any thoughts? sad



JennyB


(Jenny, I attempted to edit your signature. It was printed twice and I thought once automatically and once manually. For some reason both of them went away. I do apologize. If your sig shows up double again I'll see what I can do to fix it. We do try to limit sig lines to about 10 lines so we don't fill up the space we have. Thanks for helping out.)

Post Edited By Moderator (Chutz) : 7/14/2009 10:08:25 AM (GMT-6)


Chutz
Veteran Member


Date Joined Jan 2005
Total Posts : 9090
   Posted 7/14/2009 9:15 AM (GMT -7)   
Hi Jenny!

And welcome to our family. I too have been on Oxy for several years and would have no life if it was taken away. But my doc feels that people with fibro should be allowed to use whatever treatment will bring some quality to their life. Obviously he watches for problems but for me I've not had any. If you've been taking them for a year that likely isn't enough time to know if/when you will need an increase. I went for a couple of years before I had mine bumped up. If you are younger they hesitate keeping you on something like this but as I'm in my late 50's they are not as worries as if I were in my early 30's.

You sound like a very sensible person so I'm not sure why your doc is treating you like this. It is likely just a policy he/she has or how they feel about narcotic meds. I too am fully functional on the meds since my body is used to them. I worked for a long time, still drive, all the normal things. Sure I have a few issues like if I sit down to read and relax I am more apt to fall asleep that before but that could be partly the fibro too.

You might consider surfing and printing off some research to show your doc about addiction. Somewhere on the Arthritis Foundation website...I think it was there but it was related to arthritis...I found statistics on addiction for people who take meds like you and I do. The addiction rate was less than 1/2%...one half of one percent!! That's mighty small...smaller than most side effects of even aspirin or Tylenol. One caution I would add to this though is...don't seem TOO eager or flood your doc with paperwork. Might seem like you want it tooooo much and you know what that would do.

Good luck and I hope something I've said will be helpful to you,
Chutzie
Co-Moderator Fibromyalgia & Chronic Pain Forums ~~~
Fibromyalgia, Ulcerative Colitis, Insulin dependent diabetic, PTSD, dermatitis herpetiformus, osteoarthritis, collapsed disk, and a few other side dishes.

(\__/)
(='.'=)
(")_(")

If you ask what is the single most important key to longevity, I would have to say it is avoiding worry, stress and tension. And if you didn't ask me, I'd still have to say it.
George Burns


JennyBHurts
Regular Member


Date Joined Jun 2009
Total Posts : 23
   Posted 7/14/2009 9:38 AM (GMT -7)   
Thanks for your response, Chutzie!  I origionally posted this on the Fibro board and had 23 views with no responses so I thought I would fit in better over here.  I copied and pasted my post so that is why my sig. showed up twice (sorry 'bout that).
 
My doctor has been my lifeline as far as narcotic meds and pain control goes.  I initially saw the pain management docs at my clinic for my back problems, and all they wanted to do was shoot my back up with steroids 3 times, which they did and it didn't work.  They would not prescribe narcotics to me because (direct quote here) "I was too young and I would need more and more, and eventually I would become an addict.  That is not the way we practice medicine here."  If my primary care doc would not have stepped in, I seriously don't know what I would have done.
 
I have noticed that there are quite a few people with fibro that are on long-term opiates.  I think when doctors think of fibro, they don't think of narcotics to treat the pain.  Because I have disc disease as well, it's a double whammy for me pain-wise. I just hope that she doesn't pull the rug out from underneath me and leave me hanging. cry
 
Jenny B

Age 36
DX w/ fibro June 2009
DDD & annular tear at L5/S1
endometriosis since age 18, have had 5 surgeries to date
 
Current meds:
OxyContin 30 mgs 3 X day
Dilautid 2 mgs 1-2 X day for breakthrough pain
Elavil 25 mgs
Zoloft 75 mgs
Lunesta 2 mgs
Klonopin .75 mgs
Protonix 40 mgs
Flexeril PRN
Phenergen PRN
 
I am living in the body of an 80 year old......
 


White Beard
Forum Moderator


Date Joined Feb 2009
Total Posts : 3611
   Posted 7/14/2009 3:54 PM (GMT -7)   
JennyB

I to have been on Oxycontin for many many many years, at least 6 or 7 or more, I started off at 10mg every 12 hours, but very shortly ( in just a few weeks it was upped to 20mg every 12 hours) I was on that for a few years and then I was put on 40 mg twice a day ( every 12 hours) and have been on it for at least 4 or 5 years and just last month he changed it to every 8 hours! I do take Percoset for break through, which I try not to take any more than I absolutely need to! Often just sitting down in my recliner will help as much as anything! Anyway this medication along with my Baclofen for my muscle spasms has been a real Godsend! It is natural for your body to become physically dependent on these medications, your body also does that to Blood Pressure medications and a host of other medications. But they do serve a purpose, and even though it doesn't take my pain away a 100% it has made a 100% difference in my life, as far as quality goes! I don't know what to tell you Jenny! I look at pain medications as I do any other medication, you take insulin to control your Blood sugar for Diabetes, you take Beta Blockers or Diuretics or Calicium channel blockers to control high Blood Pressure, and muscle relaxers and antispasmodics to control muscle spasms, and you take the various medications, including opiate based medications to control pain. I know I don't like taking meds of any type, and I do not like the spacey dopey feeling some meds can produce! I will admit Oxycontin is one of the few pain meds I have ever taken that does not make me feel drugged! Other than not having pain or at least allot less pain, I have no noticeable affects from it! And that to me is good! I do not like feeling spacey or out of control! If meds do that to me, I will not take them, and I will have the Doctor give me something else!

You know if your Doctor is really interested maybe he/she should visit this site, and really read some of these post, and get to understand the people that suffer from Chronic Pain, I don't know?? It's just a thought I had!

Good Luck to You

White Beard
Moderator Chronic Pain
 
I'm Retired USAF, went back to school and became an RN, and now am on full disalbility!--Degenerative Disc (affecting mostly the thorasic disc but all levels involved), C6/7 laminectomy/diskectomy& fusion, Osteoarthritis, Ulcerative colitis, Chronic Pain, Fibromyalgia, Complex Sleep Apnea, and host of other things to spice up my life!(NOT!) Medications: Oxycontin, Percocet, Baclofen, Sulfasalazine, Metoprolol, Folic Acid, Supplemental O2 at 3lpm with VPAP Adapt SV


BionicWoman
Regular Member


Date Joined Jul 2008
Total Posts : 243
   Posted 7/14/2009 4:02 PM (GMT -7)   
I would ask your PCP for a referral to a pain management specialist (board certified, preferably) to either take over your pain care entirely, which would be the best option, or at least evaluate your current drug regimen and make recommendations. Unless there's clear signs of an addiction problem or side effects are causing too much trouble, there's absolutely no reason to mess with a plan of care that's working.

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 13466
   Posted 7/14/2009 4:29 PM (GMT -7)   

Hi Jenny and welcome aboard. I am so sorry you have to be here, but very glad you found us. One thing all of us here understand all too well and that pain. So, you are in very good company.

Yes, I understand why you are stressing as it does sound like your dr is about to pull the rug out from under you and thats not right. People with chronic pain have very much the same right to quality life as a person that has no health issues. If only these drs would understand this. In one respect you are fortunate your PCP has been willing to rx your pain medicine to you. So many drs do not want to get involved with CP ptients because they do not want the DEA or the state breathing down their necks. As the others have stated people can have tolerance issues with any medication, it is not limited to pain medication.  I go thru this very same thing with my blood pressure medication every couple years.

I know you said you wanted no part of Lyrica but you may have to reconsider. Also, remember they are required to list potential side effects. It also does not mean that you will have any of the side effects from the drug either. Lyrica is really helping a lot of people with Fibro and having excellent results.

I was surprised to see you were rx'd Elavil for Fibro-never heard of that one. I do know back in the late 70's and early 80's that was what all pain mgt put theit patients on.  

Take care and let us know how you are doing.                                                                                                                                               

                                                                                                                                                                              


Straydog/Susie
Moderator Chronic Pain
 
crohns disease dx 2002 & small bowel resection, still looking for remission whatever that is, chronic pain 22 yrs, added ulcerative colitis 6-05 to the mix, high blood pressure 28 yrs, aortic heart valve insuffiency, depression, osteoarthritis, osteoporosis lumbar spine, scoliosis lumbar spine, peripheral neuropathy hands & feet, COPD & on oxygen therapy, lupus & decreased circulation in both legs. Swveral other health issues just not enough roo to list it all. Too many surgeries to list and too many medications to list. Currently on 16 different daily medications. Intrathecal pain pump implanted June 05.


LLPLUV
Veteran Member


Date Joined Mar 2009
Total Posts : 1158
   Posted 7/17/2009 7:25 AM (GMT -7)   
JennyBHurts I want to welcome you to Healing Well Forums. We are all here to support you in everything. I hope you stay with us and join our family.

My husband has ben Dx's with Fibro just recently, they put him on amitryptiline and percocets for the pain. I take an ER med plus my percs. I go to a pain clinic, I think you ended up with one who do not prescribe pain medication. Age is a bunch of howwwyyy pain attacks without knowledge of age.

You doctor asked if you were ready. Sounds to me your not. So just tell her that and bring alot of information as another poster stated.

I hope you find some sound advice from the members for they are all such caring people.

Laurie
Kidney Diseases and Disorders
              Moderator
 
39 yr young female with,
Chronic Kidney Stones, PKD (Polycystic Kidney Disease), Chronic Kidney Failure, Severe Hypertension, Urological RSD

Also CHF (Congestive Heart Failure) and Sleep Apnea

Hopefully NO MORE........ I think I have it all


Chartreux
Veteran Member


Date Joined Aug 2006
Total Posts : 9622
   Posted 7/17/2009 7:53 AM (GMT -7)   
Jenny,
just tell your PCP that what your on now seems to be working good for you and that
you wish to continue with this treatment plan for now and just be honest with him/her and
don't worry about your meds being changed, and maybe ask about possible getting
a pain management psychologist, as that can help..
There are lots and lots of nice people here and we all care about each other...
will be thinking of you and posts back when you can...
HUGZ
(((((((((((((((((((((((((((((((((((((Jenny)))))))))))))))))))))))))))))))))))))))))))))))
**********************************************
* Asthma, Allergies, Osteoarthritis, Spinal Stenosis, Degenative Disc, Fibromyalgia, Gerd,
Enlarged Pituitary Gland, Sjogren's and Ocular Migraines

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