Fentanyl Patches

[Marky]

hi

I have been suffering with Fibromyalgia for over 15 years and currently taking Zomorph and Oramorph. Does anyone know if a GP can prescribe Fentanyl patches?

Does anyone have experience of using them?

[Blue-52]

hi, your doctor won’t prescribe them for you. while you are on, Zormoph, and Oramorph, I don’t think they can be used together, some doctors might, but from my friends experience, No.

[Badbessie]

My GP did prescribe Fentanyl patches due to my circumstances at the time. I have a long history of pain related conditions. The effects of all medications can be very individual and Fentanyl did not suit me. My advice would be to get referred to or back to pain management first for a more holistic assessment of your needs.

[Blun01]

Hey Mark, I have been using fentanyl patches for few months now, I find they help with the head to toe pain. I take tramadol as a top up if need be.

[Braveheart1]

I don’t know anything about fentanyl patches but I have been prescribed lidocaine patches and wear them 12 hours on 12 hours off

I know certain meds can’t mix so best speak to your gp

[Maud-ie]

I use Sevodyne buprenorphine patches. Not perfect but better than even more tablets rotting my stomach.

[Chance_chance]

I've been on sevodyne patches for about a month so there still trying to get the right strength patch for me, started on 5mcg/h now gone up to 10. This seems to be helping more. Hope you find what helps you most take care.

[Debbiedo2]

HI , I was prescribed the patches in hospital in 2014 after I nearly died from bowel cancer and had emergency surgery. They put me on 50 mg which is extremely high dose usually used for end of life care unknown to me 8 years later ,my specialist said that I should never been given such a high dose and said it would not work for such pain and I would potentially be better off without it. Well after a 3 month with help from the specialist I came off it and to say he was absolutely 💯 right. Yes the pain was no different. and I actually felt less fatigue too. I would go on to say I would never take it again ,it doesn't do anymore than the Oramorph ,I have both nerve damage and endopathic Spondylitis and fibro to name a few painful areas. I wouldn't risk it but that is entirely your decision. Debbie

[deejames]

I was on Fentanyl patches for 6 months. For me I will never ever ever take Fentanyl again. Effective pain relief but terrible mental side effects. I basically went quite crazy.But others may differ

[Moonow103x]

way to strong for me they may kill pain but I was like a zombie took first patch of never used them again but people are all different

[SaaraMc]

I’d kill just for the oramorph tbh. I have to fight to get co-codamol and GP tells me just to take ibuprofen 🙄

I did get lidocaine patches to wear at night, about as useful as a sticking plaster.

[Clarbear1 in reply to SaaraMc]

hi I’m the same my gp treats me like some kind of addict if I ask for co codamol. I don’t know how people get anything stronger prescribed. Even at pain clinic all I got offered was acupuncture 🤷‍♀️

[SaaraMc in reply to Clarbear1]

Right? I just had a planned c-section a few months ago and had to fight for a week for one measly box of dihydrocodeine (despite having the same strength co-codamol on repeat prescription!) - they wanted me to ‘pop down’ once I got discharged from hospital with my discharge letter and they’d then prescribe, not before. Ended up back in hospital two weeks later, nearly died of sepsis and even there was having to ask for painkillers despite being in such a bad way I was having convulsions, and they’d bring me two paracetamol and ONE 30mg codeine.

Meanwhile others are getting discharged from hospital with oramorph after their sections, a young girl my husband plays badminton with was prescribed bottles of the stuff after a minor shoulder injury, and people here apparently on standing prescriptions for years with no problem getting handed more. Every six months I need to have a phone consultation where they try to persuade me that I should try cutting down, there’s ‘no evidence opioids work for chronic pain’ blah blah blah - when funnily enough, when I’m in pain and I take two co-codamol, about an hour later I can move my limbs again and the pain is less. If I take a spoonful of morphine (acquired from a friend for absolute emergencies) I’m almost pain-free for 8-10 hours.

I don’t f-ing understand it. I’d move doctors if ir was possible but I have a shared care agreement for ADHD meds I had to fight for almost a year for and no other surgery I’ve checked with will take it on if I move.

[liannehollamd]

Hi Marky,

I take Paracetamol, Dihydrocodeine, Nortiptyline, Zomorph and Oramorph for Fibromyalgia and I've had Buprenorphine patches prescribed for it and my GP did prescribe Fentanyl patches for me but for a problem I have with my back and hip and they'd been prescribed by pain management clinic quite a few years before that but I only had them for a couple of months then. I think that as she gave me a prescription for them so long after that would mean that GP's can prescribe them but I don't think that they can for Fibromyalgia. Have you had them before? I struggled really badly to come off of them but I had to because I was pretty much catatonic most of the time. I'm quite ashamed to say that it took seeing a video compilation that was taken of me by my daughter whilst I was using them that finally gave me the push I needed to start lowering the dose and then getting off of them altogether. I was an absolute mess, I barely recognised myself and I had no memory whatsoever of the conversations that we were having in the video. I have an allergy to Pregabalin and Gabapentin so I can't take it but my cousin takes Gabapentin for Fibromyalgia and she says it's the most effective thing for it so if you aren't already taking or haven't already tried them it might be worth looking into. I used to take Amitriptyline every night but I didn't think it was having any effect at all so my GP changed me to Nortriptyline and it made a massive difference in regard to sleep and pain. I'd never have Fentanyl again unless it was for palliative care, when I'd eventually stopped them it felt like I'd lost 2 years of my life because I'd basically been sleep walking. I definitely wouldn't recommend it but I do hope that you find whatever is right for you x

[Al10]

I know nothing about this drug except what we've seen on our TV's, the illegal use. Pretty scary. However, I note NHS says it's nice and safe but sadly, you can't have those lovely soothing hot baths while you are on them because heat affects how you metabolise the drug. Says nothing about issues coming off them and you can drive so long as you think you are not affected by fatigue or poor judgement.

On the other hand, some people here say they became somewhat zombified while on this, but were unaware how much until it was shown to them.

It's a personal thing for you to weigh up your pain and coping ability now, with possible positives and negatives taking any drug. For me, I'm aware that all drugs are basically poisons and although our tolerance to them is going to be individual, over time poisons will have negative affects on our bodies. It's a burden for our bodies to metabolise poisons and our ability to do so may become less over time.

The negatives may be totally worth it for the relief you get here and now but I've experienced enough to understand, there are no free rides. When you take any drug, be as informed as you can. For sure you can blame your GP or the Pharma company or whoever, if you get damaged, but after the venting, it's you who gets to live with said damage. What ever you decide to do, it's on you.

I meet people who are upset they didn't know the drugs they were taking could cause harm. they passively did as they were told and feel victimised when they get hurt. I wish more people would, actively do their research, weigh up the data and decide to own the outcome of their decision, good or not so good.

I remember a lovely lady explaining the new drug she was on. It was highly toxic and would damage her liver over time and shorten her life by an estimated 20 years. I was mind blown! Then she said, I want to live my life now and this drug has the potential to give me that. Otherwise, I'm facing disability and pain for the rest of my life. That being the case, those extra 20yrs will be an endurance. She was well aware of the compromise and at peace with it. She felt she had to at least try to gain some better quality of life, even if it was short lived.

Don't know whether my two-pennerth helps?

[Flyfishing123 in reply to Al10]

Hi, Your two-penneth was very well put. I was on 100mcg/hour of Fentanyl and was found sleeping in my car at the side of the road by my wife coming home from work. I had already read the instructions as I had came up to 100 but I was unaware of the quick change it made to my brain, a very scary moment in time. I would have gladly taken a few years off my life if I thought a drug would give me ten years pain free and feel human again but that has not been my gift. I have slowly allowed the drugs to damage other organs to try and reduce the pain.

[Al10 in reply to Flyfishing123]

Yikes! I wonder if our Drs have any idea? 🙄

🤫I was actually driving when I was accidently not quite myself. I had no idea.

I think too many of us are disappointed sadly. Hurting ourselves more than 'just' fibro is a high price. You live and learn I suppose, but I do feel some responsibility to at least try to warn others to take care?

And to take double care if you live alone with no-one to tell you you are suddenly off you chump or passed out somewhere?🤭

To be fair, we are all different and I know there will be others who are very satisfied with their meds. It's good there are a range of people here to share their experiences for others to learn from.

[Elemis]

My GP told me flat out he would not prescribe patches due to the potential side effects.

[Flyfishing123]

Hi, I have been on Fentanyl patches for 14 plus years. I made the decision four weeks ago to try and come down to see if I could manage. I had been as high as 100mcg/hour but those were mad I could not function as a human, through the years I came down to 50mcg/hour and have stayed at that for the past few years. On talking to a group of others on different pains I was asked "are you still in pain"? I am was my reply and it got me thinking why am I on the most addictive drug going. Do four weeks ago I dropped to 25mcg/hour. It has been a living hell, the 50%drop has been to much but I should be coming out of the horrors soon. I was given morpheme liquid in case I could not cope but was to pig headed to use them when I probably should have. I have just been diagnosed with shingles in my right eye as my immune system is very low. I don't know if the two are related. I forgot to mention I came down on my Gabapentin tablets from three 600mg per day to 600mg per day a gig reduction of 1200mg per day. Gabapentin is my main Fibromyalgia drug the Fentanyl was for chronic arthritis in lower spine but should help with Fibromyalgia I was told.Sorry for this long tale but please if possible do not go anywhere near Fentanyl it's bloody awful stuff and does your organs no favours or your brain. I have put on at least two stone in weight with Gabapentin which just makes my back worse and my mind furious that I did not know this is it's big side effect.

I wish I had some good news for you but this is what has and is happening to me.

I have now found a friend who happens to be a Dr and is started to get me retraining my brain through study, group support and that awful cold water swimming which helps stimulate the Vagus nerve and should help. This journey has only started, I am 63 and tried every gadget out there and only wasted thousands of pounds.

Some day we will win😁

[Marky]

In addition to my opioids I am taking Baclofen, Pregabalin, Celecoxib, Noritryptline, and Paracetamol, Sertraline and Quetiapine! Just need some better relief than I am getting at moment.

I have also tried medical cannabis and unfortunately this did not help either.

Anyone had any luck with Tapentadol?

[tracygum]

been on fentanyl since Jan 1999... it has helped me with pain and fatigue and other symptoms but I do have to go up a dose every year or so more often in last 5 years... I take no other pain meds for fibromyalgia I was diagnosed with FMS 1998.

[tracygum in reply to tracygum]

my dose is 139mcg and I have never felt I take it never has a symptom...