I'm currently prescribed Fentanyl Patches for Complex Regional Pain Syndrome (CRPS - https://en.wikipedia.org/wiki/Complex_regional_pain_syndrome), I thought I'd share my views from the other side of the table. So ask me anything..
If your doctor refused to renew your prescription tomorrow, what would you use to deal with your pain in its place?
If you lost your job/insurance and thus were unable to afford anything other than over the counter medications, how would you cope with not having this pain medication available to you?
Does fentanyl have a procedure for when you want to stop taking the medication? (like how you should lower your dose over time before stopping with SSRIs and the like)
i appreciate you giving a first hand account from someone who uses this medication!
I was running my own business at the time, and found it very hard to work. I turned down new projects, only trying to support my existing clients. Luckily I was able to work from home, but the injury still meant I lost a lot of income and have had to use a significant amount of my savings.
It has been very important to me to help working and not rely on benefits as a friend of mine from college injured his back, he lost touch with his friends, spent all day playing computer games and he will be 40 soon and is still living in his parents attic. It's not been easy, but I am glad I stock with it. I did become isolated (Facebook & the web became my window to the world), work was actually the main thing that got me through this time. I moved to London a couple of years ago, where because of the fantastic public transport (baring the occasional strike) I'm able to get around and not be isolated. I strongly believe if I didn't move that I wouldn't be here now.
You're meant to taper off the medication as there's a large risk of withdrawals. I stopped taking Tramadol dead two weeks after the operation (day I had my stitches out, and started swimming the next). The only noticeable side effect/ withdrawal was a running nose. So believe I can do it again.
I made the mistake of wearing a patch in the sauna (I thought holding a bag of iced water over it would keep it stable). The high dose made me disorientated and may heart beat did go noticeably shallow for a couple of hours afterwards. Not a mistake I will repeat, I'll remove the patch before taking a bath or sauna again.
That's quite alright, I find it annoying that the only time Fentanyl is discussed (Opiates in general) is death and addiction.
I will say I agree with you that although this company was abusing their power/privilege with Fentanyl, and although we have an opiate epidemic, we certainly shouldn't be under-prescribing opiates either. We need to disentangle the mess we have where profit motives intersect with public health, law enforcement and education.
Personally, I think honest education around all drugs is the answer (as opposed to "Just Say No", etc..), and it's great for everyone to hear from patients who actually need these drugs, such as yourself.
The worst part is when it flares up, the best I can describe the nerve pain is like cramp but it is absolutely excruciating (the only way to treat it is to run a cold shower over my leg). The Fentanyl patches does help tone down the extreme end (I don't normally take anything for the breakout-pain as it's a slippery slope). I actually find cold compresses to be the best treatment for the swelling and have a constant rotation of icepacks in the freezer at home and fridge in the office). There's often a dull pain, part of which feels like I need to go to the toilet (so I end up going much more often 'just in case').
The annoying thing is that my last operation temporally fixed my knee (they removed some of the fatpad (hoffa's syndrome) in summer 2013). For three months I was able to stop taking pain killers (Tramadol at the time), swim, get back in the gym and cycle (although I never really went for it, I have a carbon-fibre road bike still in storage). It started getting painful after exercising, and gradually over six months later I was back on crutches. :(
I believe there is an underlying issue with my knee which can still be repaired. Unfortunately the Dr's I've spoke to are scared to operate (they find my case interesting until they can't figure it out and then refer me). I want to try another operation to repair it before going for a knee replacement.
Would knee replacement resolve the issue? Do you think you will undergo more surgery? Have you sought out any national experts on your particular injury?
I really didn't see this coming, even after the accident I thought I'd go back for a cheeky ski trip with the insurance money. One good thing, is that this has given me an appreciation for things (I was somewhat coasting through life at the time), when I have a good day I make the most of it.
A knee replacement is a fix, although not ideal. There is no going back and would mean having to get my knee replaced every 10 years, could be as low as 5, plus it takes around a year to recover each time (I'm in my early 30s so this means numerous operations). Having met many people in hospital who've had hip and knee replacements, it's not something I'm keen on. Saying that I have an uncle who had his knee replaced 15 years ago and has had zero problems.
With the medical advancements, even being able to grow cartilage from stem cells. I want another go at getting it repaired (was SO close last time!), although I am tempted to go the knee replacement route..
I think issue with Fentanyl is not the accurately labeled stuff you're getting from the pharmacist. The issue is that since fentanyl is a lot stronger than other opioids, and is easier/cheaper to manufacture, people in the black market have figured out that they can sell counterfeit pills/heroin/etc. that is actually (cut/diluted) fentanyl, and get the benefits of 1) higher profit margin, 2) easier supply chain (no pill mills or poppies needed), and 3) easier to smuggle and store raw product, due to the higher potency. The problem comes when the counterfeit product is too strong -- a user takes what they believe is their normal dose, but it's a lot stronger and they die (e.g. Prince: http://www.bbc.com/news/world-us-canada-37151146).
I've heard it theorized that the high number of recent fentanyl-related overdoses could be because some gang(s) might be trying to figure out the optimal ratio of fentanyl to filler to use in their counterfeit products by watching the overdose rates in low-income markets before moving the counterfeit products into high-income markets (i.e. they don't want to have a rash of stock brokers overdosing).
Applying Hanlon's razor, another explanation might be that these counterfeiters are just mistakenly putting to much fentanyl in the mix.
I assume that fentanyl is no more dangerous than any other opioid when the dosage is correct (I really have no idea, someone correct me if I'm wrong here!).
(EDIT) The counterfeiting issue is a one of the reasons that some people (myself included) argue for legalization of all drugs or at least better harm reduction strategies for addicts: purity, dosage, and quality control would all be better if these drugs were obtainable from more reputable sources.
Unrelated to fentanyl in particular, but a word of advice: if you need to take these meds for an extended period of time, be very wary of any issues with your gut! A very close friend of mine has been on prescription opioids for around 8 years due to some chronic pain issues she has resulting from giving birth; the constipation side-effect eventually caused a bowel obstruction which she ignored for too long, and it has escalated into a very painful and dangerous situation for her, involving several procedures which sounded very unpleasant.
There's no easy solution for opiate addicts if they want to get high. I do think law and society need to view/ treat addiction has a health issue rather than criminal.
The biggest problem I've had with my medicine is from Naproxen (a NSAID), for around a year I suffered from Iron deficiency anaemia (I was prescribed Iron supplements to try and mask the issue), I still lost a lot of weight and more severe bleeding. To the extent that a different doctor was so concerned she wanted to rush me to hospital. I'm now diagnosed as a coeliac which I believe is caused by the long term Naproxen use (the jury is still out on the relation, one doctor swore blindly that there is no correlation between NSAIDs and coeliac disease), I'm the first in my family and it's meant to be hereditary..
Now I only use a topical NSAID gel, which is another reason for needing stronger medication. One good thing about switching to patches is they have less impact on your gastrointestinal tract. Strangely, I seem to have no issue with constipation (a common opiate side-effect).
I do strongly believe GP's shouldn't be prescribing pain meds for prolonged periods. They should refer patients to pain specialised after six month or if the patient complains that medication isn't adequate as pain is a very complex subject.
Then I was refereed to pain clinic, I was prescribed Amitripyline (it's not a Opioid), which was used as an anti-depressant (~150mg), but in much lower dosages (~30mg) it works for nerve pain. One side effect (which is actually great for me) is that it does make you drowsy, so taking it in the evening greatly improves sleep.
I've also tried Hydrocodone (which I found very good), occasional Oxycodone for breakout-pain. I've found patches (initially Buprenorphine) to be much more beneficial as they provide stable relief and lesson waking in the middle of the night/ early morning as traditional pills wear off.
The biggest increase to my prescription was just over a year ago when I did some intensive physio to try and beat the CRPS (there's some good medical data to back this up), unfortunately it meant I need to for from 5mg of Buprenorphine to 20mg (the max dose) in the course of about three months. After I stopped the treatment the pain didn't really subside.
I switched to Fentanyl patches a few months ago as the Buprenorphine wasn't working. Initially for trial, but we decided to switch to them as there were very little side effects and these mean not needing anything for the breakout pain. The stronger meds seem to do very little for the day to day pain (pain becomes normal), but seem to be far more effective when the pain is bad.
Fentanyl is the first drug to scare me, the first thing I did when applying the patches was watch some of the material on Youtube (addiction & deaths) to give me a healthy respect for the drugs.
Opiates play a vital role if they're respected my both the practitioners and patients. I don't think they are something to mess around with or joke about, Fentanyl is very dangerous if abused as a small mistake with the dosage often leads to death.
However, I do think that medicine is too reliant on big-pharma. It's too easy to hand out pills rather look at other treatments. There's exercise, hot/cold therapy, natural medicine (such as weed). Even mood has a large factor in how pain is perceived.
It seems the reason it isn't prescribed in the UK (I believe it's only available to some MS patients), is for political reasons. Maybe if they put the cannabinoids in a pill it's usage may be far more widespread.