Is this as good as it gets?

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merrygirl
Veteran Member


Date Joined Jun 2007
Total Posts : 702
   Posted 8/20/2009 12:19 PM (GMT -7)   
I have been on fentanyl patch for about a month along with oxycodone for breakthrough pain.
 
 
I hate to say it, but its not working too great. Should I be grateful that its something, or should I seek a different protocol.
I just feel like I am going to appear to be a drug seeker. I also worry that there arent many other options.
 
MAybe my pain cant be treated and will never go away?
 
melissa


Chronic Lyme Disease
Fibromyalgia
Chronic fatigue syndrome
Polycystic Ovarian Syndrome
Sleep Apnea
Hypothyroidism
Adrenal Fatigue
 


Centurion45
Regular Member


Date Joined Jul 2009
Total Posts : 23
   Posted 8/20/2009 12:40 PM (GMT -7)   
Hello - I was on the patch about 2 years ago. I found it was almost a triangular dosing. On the ramp up, it was pretty good, at about 30 to 40 hrs it controlled the pain and the last part out to 72 hours was like falling off of Mt Everest.- CRASH. I was not allowed to change at 48 hours and this might have helped, or have an extra patch in case it did not stick - or any breakthrough meds either. I really wanted to sledge hammer the Dr's N2tts, to give him a dose of the pain I was going through.

After a number of weeks ramping up to the 75 patch, I stopped the whole thing. I would rather be in pain all the time, than have 1 good day and 2 that really were not good. My wife thought that this was nuts too.

I asked to go back to ER morph and IR morph and it works for me. I know it is old school, but that is the Dr that I have.

When I have had to go to the ER for something, the Dr's and nurse's are always telling me that I should be on Fent. I just shrug and tell them that I am allergic to it and bad dosing practices.
25+ Years, Sciatica, Lumbar back pain, Severe Stenosis L3-L4, DDD, Chronic pain - because the acute pain was never treated, Duh!


Morgoth
Regular Member


Date Joined May 2008
Total Posts : 177
   Posted 8/20/2009 12:43 PM (GMT -7)   
I think you should realize that our pain will most likely never go away. It can be managed, and we should try to manage it as best as we can, but we'd be kidding ourselves if we were to tell ourselves we can be completely cured. We can get better, sure; but I think the safest and most prudent thing to do is to accept the pain and try to find the best pain management possible.

I suppose you have a rough time getting rest, which explains several complaints. Has any doctor suggested sleeping medication? It is normal that when you're in pain, you have a hard time sleeping and without sufficient rest your body (especially the muscles) start to ache all over, not to mention the fact that you keep being tired all the time since you just dn't have enough deep sleep.

I has the same thing. So my doctor's gave me sme sleeping meds and afterwards I was able to do away with the fentanyl. I slept better, was more rested and a lot of my muscle aches went away. It's just a suggestion. I know several other people where an indirect approach, making sure the patient has enough rest, gave some remarkable results.

Take care.
To stand and be still at the Birkenhead Drill is a mighty bullet to shew.


merrygirl
Veteran Member


Date Joined Jun 2007
Total Posts : 702
   Posted 8/20/2009 1:00 PM (GMT -7)   
I do take 2 sleeping meds. I juust feel like my pain is at 6-7. it is too much
Chronic Lyme Disease
Fibromyalgia
Chronic fatigue syndrome
Polycystic Ovarian Syndrome
Sleep Apnea
Hypothyroidism
Adrenal Fatigue
 


Jim1969
Veteran Member


Date Joined Jul 2009
Total Posts : 2042
   Posted 8/20/2009 1:10 PM (GMT -7)   
If you really feel that the current protocol is not working for you then talk to your doctor about it and ask what the next step is.

I have had doctors in the past, for various reasons, tell me that anything over a 5 needs better controlled. Of course at the same time I have heard all the BS about how "too much" pain medication is not good for you though no one would actually say what too much is beyond fatal dosing. rolleyes
2 confirmed herniated lumbar discs. Spinal Arthritis. Spinal Stenosis, diabetic peripheral nueropathy.


Shanno
Regular Member


Date Joined Aug 2009
Total Posts : 64
   Posted 8/20/2009 3:26 PM (GMT -7)   
My rheumo has suggested a norspan patch,(buprenorphin?) I hear from other users that it pumps its 72 hours supply into you within 48 hours then you get nothing..I'm a bit hesitant to try those patches

merrygirl
Veteran Member


Date Joined Jun 2007
Total Posts : 702
   Posted 8/20/2009 3:40 PM (GMT -7)   
I just wish it would go away.........
Chronic Lyme Disease
Fibromyalgia
Chronic fatigue syndrome
Polycystic Ovarian Syndrome
Sleep Apnea
Hypothyroidism
Adrenal Fatigue
 


Stella Marie
Veteran Member


Date Joined May 2005
Total Posts : 601
   Posted 8/20/2009 3:45 PM (GMT -7)   
I was on the fent. patch for years. My pain control was so-so. I was forced to change Pain Doctors and my new PM created a different combination. My former main stay patch 75 mcg every 48 hrs was discontinued. I choose a low dose of morphine and it worked 100% better than the higher dose patch I have Dilaudid for BT, but I rarely need it now. When I was on the patch, I was using about 3 Dilaudid per day. The best thing that happened to me was changing doctors. The old doctor keep tweak a combination of drugs that did not give me good control. The new PM started from scratch.

Just a word of caution merrygirl. With a diagnosis of Sleep Apnea, becareful with high doses of narcotics and sleeping pills. I have Central Sleep Apnea and when I was tested on the high dose Fenty. Patch - my scores were horrible.

Stella Marie

Co-Forum Moderator for Chronic Pain

Rare neurodegenerative /movement disorder called “Multiple System Atrophy”.  Mobility issues,, neuropathic pain,  spasticity, central apnea, collagenous colitis, pain, swallowing and respitory  involvement,  Implants: intrathecal pump  & neurostimulator.  Extra features: O2 & wheelchair

 


Shanno
Regular Member


Date Joined Aug 2009
Total Posts : 64
   Posted 8/20/2009 4:05 PM (GMT -7)   
I to am finding a low dose of SR Morphine to be pretty good at bringing down the 'blanket' pain levels, thou breakthrough is still a significant problem for me. and speaking from experience, 120mg of SR Morphine a day does no better than 30mg for blanket pain levels (sorry I refer to my overall pain level as blanket :))

My question is, would a SR dose of Oxycontin (which I haven't been on for blanket pain) be more better? my physio says morphine is great for nerve pain, but I should find something that would work well for 'Bone pain" (Fusion).

I still would be hesitant to change from Morphine as i know it works. Sorry i know its a bit off the topic but though id chuck it in.

anice
Veteran Member


Date Joined Apr 2009
Total Posts : 536
   Posted 8/20/2009 5:02 PM (GMT -7)   
Melissa, Please don't be discouraged. I know it is hard. You do come to a point where you are so tired of the pain and wonder if you'll ever get relief. I would suggest talking to your PM and seeing what other options are available. Maybe it is time to try something else and see how it works. Pain may not ever go away. But there are so many differents meds out there. It sounds like it is time that some of the others may need to be tried. Hang in there. I am sorry you are having a hard time. I am only on Percocet 10mg. It isn't great. But some relief is better than none for me. I often wonder about what it would be like to have just one day on no pain at all. It has been so long since I haven't hurt. So I do understand...Please talk to your doctor. Keep us posted on how this goes for you. You have our support. We are all here for eachother. I love this forum and all of you. This has been such a blessing for me being a part of this family. I'll be thinking about you and wishing you the best. Hang in there,girl.
Anice

Mrs. Dani
Veteran Member


Date Joined Jun 2009
Total Posts : 2787
   Posted 8/20/2009 6:00 PM (GMT -7)   
 
 
   Dear Miss Melissa,
 
     Good evening! *huggs* I am glad you stopped by :-)  I am sorry your new med isnt working. I think you should tell your doctor. I do not think anyone thought I was "a drugg seeker". But!! I did get the distinct impression they were frustraited that I had waited so long to say something.  I dont think they truly realize that the doctors office is the absolute LAST place on earth I want to be...
 
     ~~>"MAybe my pain cant be treated and will never go away?"
 
     Have you asked your doctor that? In the same direct way? Mine, all of them, were very clear. All giving the same exact answers.  cry
 
   *HUGGS*
      dani
TWO roads diverged in a yellow wood,  
And sorry I could not travel both  
And be one traveler, long I stood


uniquelyme
Veteran Member


Date Joined Nov 2008
Total Posts : 1037
   Posted 8/20/2009 6:36 PM (GMT -7)   
 
 
Merrygirl,
Sorry to hear that your patch isn't helping you.  But I have to say that it usually takes a long time for the Dr.'s to find a good combo of meds that will help.  We usually have to do the old trial and error... it sux but that's all we have right now.
 
I agree, you should tell your dr. about this, luckily these Dr.'s expect to have to change the meds we take so they don't get too upset about it...
 
Me.
 
and I doubt they will see you as a drug seeker.

I have been a spectator for so long..Now it's time to participate.......
 
Post Lamenectomy Syndrome, Spinal Stenosis, DDD....
1999 Hemi Lamenectomy/2005 Spinal Fusion(L4-S1)
Methadone 120 mg. a day/  30 mg. Oxycodone as needed(up to 4 x a day)
High Blood Pressure: Lisinopril HCTZ 10 mg. daily
Type 2 Diabetes: (March 16, 2009)
Metformin HCL ER 1000 mg. at night..Glipizide 10mg. 2X in the morning
Lantus 35 units at bedtime with Solostar Pen                                                                   

 

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