
I'm prescribed Fentanyl – AMA - velox_io
It seems every couple of months the topic of Fentanyl pops up in the media and is discussed on HN (usually with negative connotations).<p>I&#x27;m currently prescribed Fentanyl Patches for Complex Regional Pain Syndrome (CRPS - https:&#x2F;&#x2F;en.wikipedia.org&#x2F;wiki&#x2F;Complex_regional_pain_syndrome), I thought I&#x27;d share my views from the other side of the table. So ask me anything..
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unprepare
How debilitating is your pain?

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!

~~~
velox_io
On a bad day I cannot move, I lay in a darkened room as everything seems to
annoy me (light, noise, even my own music). A few months ago, this meant that
I couldn't get out of the house to pick my prescription (on a Friday), and it
wasn't until the following Tuesday that I was able to pick them up. That
wasn't a fun time, I should of got some help but I like my independence.

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.

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drvdevd
Hey I just want to say Thanks for this AMA. I was going to mention the Insys
thread here when I went back and saw your link to this.

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.

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cr0sh
First and foremost - does Fentanyl help you with your CRPS (because reading
that wiki entry, it sounds terrible)?

~~~
velox_io
The Wikipedia entry is on the extreme end of the scale, luckily my case isn't
as severe. My injury is the result of a skiing injury (and following
operations) 5 years ago. I'm actually glad to have physical symptoms (swelling
& brushing in my left knee, and when it's really bad my left foot also swells)
as most medical doctors will try and convince you that you are crazy. On my
last MRI the Dr tried to convince me that there was nothing wrong as he viewed
the MRI results (he barely looked at me), I simply pointed at my knee and said
"It's purple!".

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.

~~~
DoodleBuggy
Sorry you are going through this and I hope you find a permanent resolution to
your issue. I'm glad you are able to find a substance that works for you, and
it bothers me that pain killers have become so politicized and are now much
more difficult for genuinely needy patients to get them.

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?

~~~
velox_io
Don't be, I have a good quality of life (even started going to the gym again,
can't do cardio but that doesn't stop me doing weights). Only thing really
missing is that I've stopped travelling (a two hour train journey is pretty
much my threshold and being cooped up on a plane sounds like hell). Dating
kind of sucks, there's the moment where my injuring crops up and you can seem
the moment where the date has turned south. Most girls don't seem to have a
romantic image walking along the beach with a guy on crutches, I can't really
complain is I've dumped girls too.

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..

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jdenning
First, I'm very sorry you have to deal with such a difficult issue, and I'm
glad that something is available to help with your pain. It is very
unfortunate, IMO, that many people are having difficulty getting the pain meds
they need due to the drug war.

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](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.

~~~
velox_io
If you look at it from a business perspective, it's much more efficient to
smuggle stronger drugs. The problem is that Illegal drugs do not have the same
quality control as regulated medicine, when one is 50 times stronger small
mistakes are deadly.

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).

------
maccam912
Were you prescribed anything for pain before fentanyl? If so, what is
different about fentanyl? What prompted the switch?

~~~
velox_io
I've been through most Opiates, was on Codeine & Tramadol for two years
(because my GP was scared of me becoming a addict), during that time I found
it very hard to sleep properly (I'd even go as far as say the prolonged
periods of sleep deprecation was worse than the pain).

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.

------
genieyclo
Thoughts on the new Gucci song -- Selling Heroin?
[https://www.youtube.com/watch?v=FcXDMXuUPB4](https://www.youtube.com/watch?v=FcXDMXuUPB4)

~~~
velox_io
It's overly Auto-tuned!

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.

~~~
niteshade
Speaking of, have you tried marijuana for pain relief?

~~~
velox_io
A few times, and it did help. I can see it working better than opiates for
many patients.

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.

