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thanks to everyone who left these comments...makes me feel less alone....i am 32 and 18mos ago was hit with transverse myelitis a rare spine disease that within days paralyzed me for 3months. the fet patches were needed at the time....i have regained all my walking abilities but at the time i couldnt stand for 5minutes the pain caused me to black out....the patches allowed me to at least move around my home enough to take care of my 5yr old. now i walk normally.. still lots of pain from the spine imjury and also have herniated discs that pinch a nerve...i went from 25 every 48 hours to 50...now im done n i had my dr put me back down to 25 yesterday...after 24 hours on the 25mcg patches i began feeling so bad i took the patch off..i feel like if im gonna go thru this ill just do it...not do it now then again to get off the 25...i realize i may change my mind but they r there if i need them..i have lyrica nuerontin valium n 7.5 norcos to take edge off...i tried to get off these before.. about 8 months ago and ended up n er screaming for morphine...so i sent the kid to daddys for three days, my fiancee is here to help...turned the bedroom into a dungeon n here we go!!
youtube videos under wellsbritney
ms transvverse myelitis
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I'm a 32yo c2 incomplete/quad with a good deal of sensation below the neck, as well as weak but adequate arms & dexterity. I had a spinal osteotomy earlier this year, making about my 17th surgery in 28y. (this one massively complicated nearly every aspect of my life, I don't recomend, even if your spine's severely twisted!!) I've been on/off 37mcg for 4 years, (along with 10mg Oxycodone every 4h as needed, Lyrica & a couple muscle relaxants). Luckily I don't seem to have the withdrawl issues mentioned here & went cold turkey off the patches first, a few years ago, though about 8 months later put myself back on 25 & eventually get stepped up to 37 again shortly after. (later having the time frame cut to every 2d) Lately they've been fogging up my brain & upsetting my stomach to the point that I don't even feel up to leaving my room if I can get away with it, so decided I'd try going off them again. (as honestly, they've only ever just cut the edge off pain) Unfortunately, with all my neuro issues, without them I have muscle & nerve spasms that would drive anybody insane. (the worst part being a major lack of sleep, which just compounds things) I've been on & off a zillion muscle relaxants/other drugs and the only thing that seems to positively affect my spasticity is narcotics. My very knowledgable specialist has never suggested anything on par with Fent that might have the same affects but without making me feel like complete c**p. (he thinks the edge they take off is enough to keep my body in a fairly relaxed state) Is there anything else out there I could try? Currently, I'm all out of patches & don't think I could safely get to the pharmacy to drop off my scripts, heh.
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Hi your gp should write you script I was on 150mg but I was told that if I don't try to cut down because of all the other meds I was on I would go into sudden death I halved it but it was sheer hell for about a month and as you only have one kidney and I found that mine really hurt I couldn't go the toilet properly or anything don't do it by yoursetheir they want you to come off then they have to help you if you just stop I can kill you if you can't go to your gp go to the hospital don't take no for an answer
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where did you go for this? I have tried to get of but cannot do it on my own because I go totally insane with withdrawal symptoms. It is scarry. I have to get off but don't know how.
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thank you, joshua! this advice is so helpful. it's 4 days until christmas and i am on my second to last patch. i have been taking 50mgs of Feneryl (sp?) for the past month. prior to this, i have been on vicodin for the past 4 years. my doctor suggested the patch about a month ago. i really didn't experience much coming off the vicodin and going to the patch - excepts that i had bad headaches for 3 days. the patch seemed like my savior on getting off the pills - completely! only when i started reading about the patches did i start freaking out!! what was my doctor thinking???
i have not slept well since ive been on the patch - yet i'm tired during the day - the afternoons are the worst .
i'm really hoping that i can get more of an idea of what i can expect. anyone?
again - i'm hoping that since i've only been on the patch for 4 weeks, the detox won't be so bad.
thank you again, joshua..... very, very helpful!
LM
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Take this advice from a 43 Y.O. doctor with 15 years of chronic pain. On this critical health issues (and chronic pain is one of the most critical health issues in many's opinion), ALWAYS get a second, even third or fourth opinion. THIS IS YOUR LIFE!!!! You ARE right about the obvious point that is paramount to this discussion: The Fentanyl works! Good common country 'horse sense" would incline even the most unqualified (save one hack oncologist down round Canton, Georgia) to utter the age old Truth that is by it's very nature self evident: "If it ain't broke, don't fix it!I I am a successful doctor in Rural America and one thing I've learned if nothing else, is we are above ALL ELSE obliged to relieve suffering. We are not obliged to prevent addiction by denying appropriate pain control. We cannot definitively prevent or cure disease. We can never take on the obligation to modify patient behavior/compliance. But we can LISTEN to our patients. The old cc: (chief complaint) clinical note has all but been replaced with S.O.A.P. notes over the last 15-20 years. Stating [S: Patient reports to the ER, claiming to be a 24 yo hispanic female reporting pain of the lower back for several days duration, ranging from 7-9] should never imply that that is the cc. What if she's 9mm dialated and 90% effaced? Her cc is "It hurts", leading into clicincal exam and diagnosis focused on finding and treating the source of the patients pain. Your pain requires titration which means YOU will have to tell them what works for pain. And your misguided oncologist is actually right too. I would not only feel free to get a better oncologist, I would consider reportying her. what you describes constitutes patient abandonment. Don't accept it. Dr. TJ Higbee
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Thank you for the info on your experience. I am so stressed out about going off them. I have been on the 100 mg dose for 12 years. My insurance will no longer pay for them. Just another day in paradise.
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Folks and fellow Fentanyl transdermal users/prisioners;
While I am posting this message as a 'guest' for my own reasons, I IMPLORE YOU to read the entire post, hopefully twice, as I, as a tax paying, happily married, medium sized business owner SWEAR WITH EVERY SENSE OF MY BEING THERE WILL BE NO WORDS OF LIES, FALSE HOPES, OR STRETCHING THE TRUTH. You may choose to laugh, swear, or ignore it...but please take a couple of minutes and read it, as I'm sure it will be quite long and boring at times. Please afford me a little latitude. Thank you. My name is Andy and I reside in the midwestern US...lets say a couple hundred miles from Indianapolis. I relocated here in 2001 from the east coast upon meeting and marrying my wife who is from this area. At the time, she was a 15 year community hospital RN.She still is. Prior to moving here I spent 15 years as a major market radio personality. A DJ if you will. Not a labor intensive job. We are both 47 years old as of this date of this posting. Life was great, I moved here, found the love of my life, she had her job, we had savings, a took a couple of pt radio jobs for kicks..and then started a small business based on a hobby in 2003 that became successful beyond my wildest dreams. Life was good. I was always a healthy guy..had knee scoped a few times from playing years of ice hockey, but nothing major. I should also mention that I attended a very respected east coast college of pharmacy for 4 years..dropping out when the 'radio bug' hit me..biggest and most expensive mistake of my life...but thats another story for another time. I'm certainly not a Rhode Scholar...but I'm not a drone either.
If you've read this far, I'll state that I am currently 67 hours since removing a 50mcg Fentanyl patch. Much more on this later. Please read on.
In Feb. 2005 I went to get out of bed and couln't stand. Terrible pain in my back, legs. Thought I was having a stroke. Woke my wife, who managed to get me into the office of a respected neorologist (through her employer relationship with him) within 2 hours. He examined be briefly and agreed I was in pain. He made an appt for me with the only PAIN MANAGEMENT MD in town in 2 days, and gave me a script for 1x 25 mcg patch until I say the pain guy. I put on the 25 and by that evening pain was tolerable. I had no idea what this wonder patch was...but i could walk. Great.
Being a follow through sort, I kept the appt with pain guy. He examined me in office..pushing on parts of my spine until I yelled, lifted each leg until I yelled, and shook his head. Scheduled an MRI for me 3 weeks from that time, and sent me off with a script for 30 days of 50 mcg patches Q72h. So, like a good doobie I change the patch every 3 days, go for the MRI, and see him a week after. By this time I am totally pain free. MRI reports severe stenosis and other jibberish. VERBATIM I was told i have the back of an 80 year old man, and would most likely be in a wheel chair in 24 months. I was 39 at that time.
This went on till 2010 where I was fully convinced my life as I knew it was basically over. BTW...I was up to 150mcg Q72h...I'll spare the details but I had givin up on life, as I was lead to believe as he say and billed my insurance each month. My 3 million/yr business suffered, friendships, marriage, you name it. My wife accepted that she was married to a broken man...and I love her for it. One day..this pain md announces he is moving to another state, and a recent med school grad would be taking over for him. Whatever....just give me my 'life saving' patches so I can continue to walk a few more months...
At the FIRST meeting with the new pain guy, he looked at my chart/mri..and called a male nurse to escort me to the mens room for a surprise pee test!! I was shocked/hurt/embarrassed....he told me these words Iwill never, ever forget...'Andy, you are a drug seeker. There is nothing wrong with your back. I threw a chair at him and was escorted out. That newly licensed MD saved my life.
I have a 'friend' who is an infectius disease MD. We are 'friends' to the point we play golf, poker, a couple of small business ventures. He was not my doctor. I never asked him for anything. We both knew there was a professional line neither of us crossed. I went to his house that evening, along with my wife (works with him) and spilled my guts. He didn't know what Duragesic patches were. On our friendship he wrote me 150mcg worth of scripts to stave off the monkey that was coming on my back quickly. I had 30 days to figure something out....impatient detox was not an option. Not from a financial standpoint, but I had 21 employees..nobody would understand.
This was 2 years ago, slowly tapering down to 50 (for 8 mos) 2 days ago the 50 came off. I have spent literally 6 solid months researching this drugs mechanism of action, benzine ring breakdown differences in people of color, negro, basil body temperature, inconsistancy in the quality of adhesive used by Watson Pharmacuticals ...have you noticed the last 6 mos Watson brand patches don't 'stick' as well as they used to..or they 'just don't seem to last as long as they used to'?
It's not your imagination. I can't elaborate any further on that specific subject at this time. PLEASE LISTEN TO THESE WORDS...I am not a millionaire by any means, I make a very good living. I have personally invested $20,000 researching this drug, it's prescribing practices, and literally dozens of other behind the scenes objectives of the manufacturers, incentives to prescribing MD's based on geographical location and insurance carriers.
I was one of the lucky ones..I had a (now VERY good) friend that was an MD that was my saving grace. I CHALLENGE ANYONE that has been on more than 50 mcg for any longer than 2 months that 'cold turkey' and have had no real problems.
It CAN BE Done, outpatient..BUT..it is not QUICK, and not totally painless...but it can be done CORRECTLY..sure staying hydrated is nice, tea if you like tea, vitamins, baths...great but basically BS. Benzos are NOT the answer xanax, valium, etc....Clonidine DOES have a slight beneficial effect....BUT..it has stroke level rebound effect if you have the slightest tendancy toward hypertension.
There are 2 drugs that are CRUCIAL to success. HOWEVER.....if you are on a stronger dose than 50 mcg Q72h you MUST, MUST taper through reduced fentanyl until you are on 50 for 3 months minimum before attempting this.
Also..this isn't some BS 'cocktail' that every quack has populated the net with. Worthless
YOU MUST HAVE A FAMILY/GP/PHYSICIAN THAT IS SYMPATHETIC TO THE CAUSE. YOU WILL HAVE TO EDUCATE THEM.......I'M NOT GOING TO LIST THE 2 DRUGS HERE. ONE OF THEM YOU CAN PROBABLY GUESS..THE OTHER YOU WON'T. YOU WILL NEED RX'S FOR THESE 2 DRUGS FOR 2 MONTHS FROM THE 50 MGC LEVEL.
I am not SELLING anything, don't want anything. If you are REALLY serious about getting OFF this stuff...if your only taking it to avoid the SICKNESS..and not PAIN CONTROL..BTW...Fentanyl ALONE as an analgesic is very marginal at best. Ask yourself this...Why do 'Pain Docs/Clinics' nearly ALWAYS RX A PO Opiate for 'Breakthrough' Pain..Perc,OXY, Dilauded, MS???
If Fentanyl is approx. 100X more potent than morphine for REAL inpatient pain control....why is Dilauded the most popular hung IV analgesic is US hospitals? Why no IV Fentanyl??
Why are outpatient Pain DOCS hesitant to RX 'Short Acting' PO drugs for 'Breakthrough' pain along with Fentanyl....but have no problem RX'ing Percocet, MS Contin,Oxycontin, etc..along with Fentanyl? THE LONG ACTING BS 'BREAKTHROUGH' DRUGS ARE MASKING THE HORRIFIC INEFFIENCY OF FENTANYL FOR ANALGESIA!
I will check back this post daily, feel free to comment, tell me to screw, call me a nut..it's a free world. HOWVER..if you are SERIOUS AND HAVE AN MD IN PLACE WHO WILL LISTEN...I will set up an email address to contact me and I will share what you need to know. Don't waste my time please if your not serious. PLEASE POST COMMENTS
I WILL GUARANTEE THERE IS NO HUMAN BEING IN THIS COUNTRY THAT HAS RESEARCHED THIS DRUG AS I HAVE.
THIS DRUG IS RUINING YOUR LIFE. YOU ARE IN TOO MUCH OF AN UN NOTICED STUPOR (FOR LACK OF BETTER WORD) TO REALIZE IT
IN CLOSING I WILL SAY THIS. I HAVE 3 PRIZED POSSESSIONS IN MY LIFE. MY 2 GROWN CHILDREN, AND MY WIFE. I WOULD GIVE MY LIFE IN AN INSTANT FOR EITHER OF THEM.
I WOULD GIVE EITHER OF THEM UP IF ANY WORD IN THIS POST IS A LIE.
PLEASE RE-READ THIS ENTIRE POST AT LEAST TWICE BEFORE YOU PASS JUDGEMENT
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Interesting & glad whatever your new drug regiment is, works for you.. but didn't ya state a Dr. said there's nothing wrong with your spine? As a quadriplegic who's had MASSIVE scoliosis since around the age of 13, (to the point that one side of my ribcage was literally resting on my pelvis & I had to have a spinal osteotomy to alter such), I'm no drug seeker - my body's severely messed up, all over the place. I would love to get off fent, but at least so far, I'm not convinced there's a solution that'll provide the same results that it does for my particular issues. Also, I have to assume one of your secret drugs, (real helpful to tell people there's a solution, but not what it's made of), is some form of weed. I have a lesser desire for its affects on my body than even fent has.
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