Pain Concern
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Fentanyl patches

Hi. I see some of you were on fentanyl patches a couple of years ago and most people hated them and were trying to get off them. Two years later and I wonder if any of the people involved are still on this forum and if so can update us. I would be most grateful for any comments about fentanyl patches either positive or negative. Thank you.

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I was one of the people on probably the highest dose of Fentanyl for about 5 years. After this period of time they stop having any effect. I was called in by my hospital who had changed their policy on Fentanyl and was worried it would affect my immune system. I was sent to an addiction clinic who decided I didn’t have and addictive personality. They sent me back to the hospital and with the help of a psychologist and physiotherapist it took me 7 months to withdraw. They gave me Gabapentin along with Tramadol, paracetamol and diazepam. I am relieved to be off them I was always scared of the side effects. Now they only give out a few and make you sign something to say you’ll come off them. I guess I was in so much pain initially they may have helped but I hate to say it but I don’t think they have really discovered anything that helps pain other than serious opioids which are really addictive.

I am just telling you my story so everyone is different and you have to take your own path. Good luck and take care.

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Essie I thank you so much. So sorry you had such a bad time. I've suffered extreme pain for over 20 years and I agree there really isn't anything effective. It's a terrible way to have to live. I can't tolerate tramadol but I'm glad you get some relief at least. Take care Essie. Xxxxxxxx

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I was only on it for a week if that long. Not sure if it was the reason my Blood pressure went high to the point where it could have caused a stroke. My pain Dr. called an ambulance to take me to the ER. I think it was related cause the Dummies took me off my Oxymorphone of 40 mg 2 times daily my 30 mg oxicodone 4 times daily, instead of weaning me off them. They said the patch should have taken care of any withdrawal symptoms I was having. The ER Dr. said that could have caused my Blood pressure to skyrocket too. Sorry, I don't really have words of wisdom for you.

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How scary Sassy. You poor thing. Thank you for your response xxx

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Your welcome

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Hi, I got an email notifying me of this post. Yes I eventually came off fentanyl last year. February 2018 I had a Whipple surgery to remove the head of my pancreas. They finally discovered the pancreatic duct was damaged and constantly inflaming the pancreas and stents helped a lot but kept causing acute pancreatitis. My pains reduced a lot since surgery but my pancreas is damaged (what remains) as the pancreas was inflamed so long (7yrs) due to the duct damage. I had a terrible time post AP attacks (after ercp for stents) and an even worse time post surgery due to the amount of fentanyl I was on. I was in ICU 14 days and vowed I was coming off it. So 6wks post op I started my reduction and it took me 8month to come off it. I can’t manage without any slow release Meds though so I’m back on slow release oxy but only 20mg twice a day. I also take instant oxy for breakthrough pain.

Hope that helps. Feel free to get in Touch for any further info.

Take care

Debbie

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Oh Debbie you poor thing. That’s dreadful and the pain would have been excruciating. I have severe fibromyalgia and polymyalgia rheumatica. I really admire your decision and strength in coming off Fentanyl. Were you on a high dose ? You really did an amazing job. Some people never manage to do what you did. I have no idea about the oxy long term and short term drugs. Are they as addictive? It’s very hard to know what to do for pain. I really hope you feel much better xxxxx

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Hi daisy chain12 I have been on dental patches for 10 years I don't seem to have the problems a lot of others have and the alternatives gab and tram gave bad side affects I'm not a good pill taker my body doesn't seem to like them I recently had a problem with my patches the matrifen wouldn't stick so gave no pain relief I had to change doctors to be put on an effective one again but all is ok now still get the break through pain but overall I function very well on them wish they would come up with something else though

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Lizzy I am so happy for you that something works. I know they are not ideal but you sound quite positive about your experience. I do agree there needs to be a better and safer way of controlling pain. I get terrified when I see on tv that more and more drugs are going to be withdrawn due to abuse. So unfair on those who need them desperately xx

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I wrote a long response and was then told I don’t have the authorization to reply! My entire response is gone. Will try to post this & then reply with a short statement.

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Oh how annoying!!! Maybe type it and save it to cut and paste? I hAte when that happens!!

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The Fentanyl patches were ineffective however I was on the fast acting Fentanyl medications which were life changing. Actiq, Fentora & Subsys were the 3 on was on for a period of 10 years. A quality of life was returned to me that I hadn’t experienced since my chronic pain began in 1996. It was a constant battle with my insurance, switching carriers at least three times. Due to the current situation with opiates & Fentanyl, my doctor was ordered by the Attorney General to stop writing all Fentanyl prescriptions. I never had a medical issue for the 10 years I took these medications. I signed medical contracts, had unannounced urine tests but it didn’t matter to the government. My pain is now horrible again. Why would our government feel they had to interfere with my relationship with my doctor? I did nothing illegal, just looking for pain relief.

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Are you in the US?

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Yes, New Jersey. My doctor said I was low hanging fruit, meaning easy to find. I followed all the rules, just looking for relief from the constant pain. I should be protected not hurt by the situation.

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Oh darling my heart goes out to you. Pain is horrendous. It saps at who we are. It never lets up. We shouldn't be punished for it, that's just obscene. What can you use now? Xxxxx

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Sorry for the delay. I take Oxycodone & Hydromorphone (Dilaudid). Takes the edge off but the pain is unrelenting.

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I’m desperately sorry for you. Where is the fairness in that? What do they expect you to do now??? The govt here in Australia removed codeine cos of abuse. Now they are talking about fentanyl. Yet they offer no substitute. I want a life. I want to be able to wake up and not cry helplessly. I don’t want to get high. I send you my best wishes and empathy xxx

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Thank you. I’m sorry for your situation too. Now every time I fill my pain meds there’s another issue to deal with. The stuff I take only helps a little. It’s just so unfair and we have no recourse.

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Me too. My wonderful gp says he feels terrible that he has nothing to offer me and there is a big gap in medicine. Is medical marijuana legal for you? Xxx

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My pain doctors are wonderful and just want to help. They are very frustrated. Medical marijuana is a very limited program currently in NJ. I now take oxycodone & hydromorphone. They barely touch the pain. I also use cbd oil which is from the hemp plant without the THC in it. I’ve had bad reactions to marijuana but am waiting until I can get it legally and go to a dispensary where maybe they can help me. What are you taking???

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Hi Daisy chain I'm in Australia too. They are slowly taking opiates off the market and doctors are getting very strict with everything else. I went to a,new doctor yesterday and asked for Lyrica and Valium. I explained I have a,severe anxiety disorder and I find 2 valium a day very helpful. He asked what meds I am on and I believed I told him everything. He sent me to the waiting room and told me I had to see the nurse. Five minutes later he called me back into his office. He had phoned the PBS. He told me off for failing to tell him I have a 20mcg Bupranorphine patch. I often forget I have it because it doesn't do much. Then he gave me the script for the Lyrica but not the Valium. I felt like I was in shock. I couldn't believe that he lied telling me I had to see the nurse and phoned the PBS behind my back. I only went to him because my GP is on leave.

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Hi Lola sorry I just saw this. What a crappy experience. I always go what I am on. I feel bad for you and I feel scared at the docs clamping down on genuine pain patients x

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Daisychain12 Hi, I had failed back surgery in 2007. After completely popping a disc in 8/2006. The pain was excruciating. Would have rather had 5 babies with no meds one behind the other. I was started on hydrocodone 7.5 4xday and 5mg valium 2x. Then we finally after 5 years at pain clinic I was at 10mg x6 a day, with some relief but incomplete, by then all the steroids they tried gave me awful diabetes and damaged my liver, kidney and neuropathy so bad I cried. Daily, finally lost balance an wheelchair and crutches. Home bound . We tried every med out there. This October 2 years ago after much resistance they gave me no choice but to try Fentanyl Patches. They started on 12.5 to wean off Norco 10/325 6xday up to 25mcg patch every 48 hours. I get 30 Hydrocodone 5s take 1/2 morning and 1/2night for hip. And the patches work well for me. Now if it ever comes time to withdraw as they said I will need pain control forever. Well I here horror stories. But my doctor said they have a plan in place for wean off if ever needed. But they got me down from a constant 6 on hydrocodone to a 2 occasionally a 3 sometime a 1. So it does well for me, but I seem to be the exception to the rule. And I must go monthly to pain nurse, doctor per 3 months, meds are written monthly, they watch us closely, they do random screens. I'm on a contract. But for me it works. Best Wishes to you

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That is such a lot to go through I’m so sad for you. At least you get help though and I’m so glad you do. No one should suffer that level of pain. The patches seem a good option for many people don’t they xx

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Daisychain12 .....It's been 12 years and it's very hard , they loaded me with steroids at points and it brought my hereditary diabetes out, really bad and my liver kidneys lungs and small nerves were damaged on top of original pain. Pain treated wrong can do a lot of harm and the first Dr did just that. Harm! But your right no one should suffer pain when proper medication is available. The government is putting good doctors in a spot to where they cannot treat patients properly and it makes them worse. I am blessed with a good pain clinic through the Rehabilitation and Pain Clinic System at the hospital, but I wonder every month when the government will step up on them. They follow rules to the line though, they don't overprescribe and they try not to underprescribe. They keep a close watch on all patients and they try hard to weed out the ones who are abusing the system and such. But the patches do well for me and several others I know, all you can do is try. Or decide not too. I fought for 2 years against the patch, they kept telling me it would be my best option, it would give best relief and it would take some pressure off my liver kidneys lungs and stomach. And when they were told patients had to be on long acting opiates, and small amounts of low strength for break thru. Two years ago, I left the office in fear. I still fought it. But after first few weeks it was the best thing They could ever do for me. It's been the best relief to date. I wish you the best

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Bless you for sharing that. Thank you. I can only say I hope so much that you continue to manage your pain atom sending you a huge hug from Australia xxx.

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I’m still off and in agony

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Oh I am so sorry to hear that xx

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My god daisy you've had some horror stories for replies I'm in England I hope they don't go to those measure here a lot of drugs get misused it's a sign of the times but to stop genuine people who they know have severe pain issues is beyond cruel

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Lizzy it’s terrifying. I don’t know what the authorities will give to people like me who are in extreme pain. You are right about the horror stories it’s awful to see what people go through. I know people who have had lived transformed with patches so they are a great option for some. Xxx

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That's what I found my oxy was the only drug that works for me I was on 150mcg hr of Fentanyl but it didn't seem to help much I was on 4 x 20mg oxy it for breakthrough the matrifen patches were an absolute joke I was walking down St puking with withdrawal and would have been as well wearing a band aid once Dr changed me bk to 2 75mcg Sandoz n they got into my system I was fine. I had no pain relief from them but no opioid wd while on them once I had enuf of patches coming of or Dr prescribed wrong brand I changed back to oxycontin 160mg and oxy norm 20mg x4 I was fine after a week of adjustment so the grass isn't always greener on the other side I'll stick where I am least there's no politics about opioid/ates here in Scotland Dr's are allowed to prescribe iv heroin to addicts if they want none do though 5 in UK I think lol

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Wow that is a very different culture to what we have in Australia. I’m glad for you that you are not in pain and you are able to get the help you need. We can’t, over here. It’s getting tougher and tougher to get any pain meds. X

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I don't understand all this banning this n that all it does is drive people to street drugs I suppose planting a few acres of poppy's (for nice flowers of course) be poss in outback? :) I managed a tiny crop of 100 plants last yr can help very much opium tea or smoke able opium etc ;-) regards x

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Oh what a great idea!!!! I heard that some woman was actually testing positive for opium from poppy seeds so it must be a “thing”. Xxx

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Make sure you get the right seeds papaver somniferom Google the rest wonderful pain free bit of work but worth it

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That is really very interesting and helpful. Thank you so much xxx

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Talking of poppies and substitutes have many of you tried the cannabis oil would that be a good substitute for fentanyl would be really interested in your replies

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Hi Daisychain12,

I had 2 failed back surgeries and nerve damage and chronic regional pain syndrome and have been put on everything from morphine to Fentanyl patches which I still take amongst around 12 other pain meds a day (based in UK) and then Fentanyl patches are a fairly new thing. I wasn’t aware they had bad withdrawal problems but then I’m on a lot of opioids as well and my problems don’t have a good prognosis of improving so I have started a trial of controlled Ketamine doses under my pain clinic to see if it will turn the pain receptors off in my brain and lower my opioid tolerance and also lift my mood. It’s hard for me to differentiate what meds are helping more than others as on quite s few but I still get pain as I’ve grown a tolerance to these meds over the last 4 1/2 Years so my pain doctor tries different meds and doses to help control my pain which has me house bound. If it ever gets better (I can only hope) then I think I will need detoxing in hospital. Hope that helps you a bit xxx

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Hi thanks so much. You have been through hell haven’t you. I’m sorry!! I tried a ket infusion but they had to stop it as twice I had severe hallucinations oh gosh it was terrifying. I know it works well on some people but they go into hospital twice a year for a week. I think opioids are fabulous but the addiction is a real and terrible slippery slope. It’s fine to say I will stick to the prescribed dose but I know many people who said that and eventually the prescribed dose doesn’t work. It’s a terrible problem cos what the heck do you do. To be out of pain is so wonderful of course we want that more than anything. I just keep trying to get by. I have two major chronic pain conditions. I am terribly afraid of pain. I sincerely wish you well. Xxxxxx

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Australia follows America. Just because there is a major opiate problem in the States, both legal and illegal Australia has to follow on like sheep. I think we would be better served to put money and resouces into the Ice problem which is destroying lives of people of all ages.

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Yeah I agree. It’s us poor bastards who cop it for the bad guys yet we need the drugs for the reason they are manufactured!!! It’s nuts isn’t it. Are you coping!? I’m in Victoria. I live in dread of further cuts in meds xxx

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Hi Daisy chain I am in NSW and it's definitely happening here. I am in pain most of the time and my 20mcg Bupranorphine patch is so mild, maybe it takes the edge off but that's all. There is no chance of getting anything stronger because my doctor will get into trouble. I was in looking for a pain clinic in the local area in the hope that I could get my Lyrica dose put up but the pain clinic appears to be closed down. I am only just coping but I get a lot of help. 1 hour a week homecare for housework and 2 hours a week to attend appointments and go into large stores. On these days I take my old lady walker, it takes some of the pressure off my thighs. I can drive but only locally but I can't go to places where I need to walk a lot. I wish you all the very best and hope you are able to continue getting your meds.

To

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I’m so sorry. I’m in Melbourne and there are a few pain clinics but they seem geared towards people who have short term conditions. I am very scared of the way it’s going. I see them making pain relief harder to get and for someone like me in severe pain that is terrifying. What will happen to us!!!!! Xxxx

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I find them brilliant.i have had them for 8 years due to a spinal injury and use between 37mg to 50mg every 3 days. Less side effects than the usual pain medication.i am currently waiting for a spinal nerve implant next year but the patches work great.

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Do you find they last the full three days? A lot of people feel they wear off after two. So glad they work for you x

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Hi I think you are worrying too much. We don't really know exactly what will happen yet. Maybe you won't get taken off the patches or if you do you might be given another strong opiate. Have you asked you're doctor what to expect

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Hi Daisy chain thanks for responding to my post. I am on a 20mcg Bupranorphine patch and it does nothing. Bupranorphine is part opiate and part Naloxone which stops some of the affects of the opiate. It doesn't touch my pain but I have no chance of getting anything stronger because my doctor will get into trouble. I really hope you are able to remain on your Fentanyl patches. I don't see how the Government can take people in pain off medications that are working. Good luck and try not to worry too much.

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