As you are all aware, I was diagnosed with Ehlers-Danlos Syndrome (Hypermobility Type) and with that, comes a great deal of physical (and mental!) pain.
Pain rules my life and I have to live around it; I have spent many years trying many different pain medications with varying results.
When I came back from a three week pain rehab programme, I asked my GP to prescribe Fentanyl Patches. He agreed and I went away with a script for 12.5mcg (micrograms) and that’s where it all started.
I have been a regular codeine taker and it works well for me. I have never felt the need to take it, I only took it when I needed it for pain – so I was not addicted.
However, when using Fentanyl I quickly found that the 12.5mcg patch lost its effectiveness after only a few weeks and I titrated up to 25mcg.
25mcg in the grand scheme of things isn’t a massive dose. Yes, Fentanyl is 3 times stronger than Morphine but it’s still a relatively low dose. I was replacing my 25mcg patches every 72 hours and plodded along for a good 8 months. For around the last 6 months I have been dealing with hot flushes as a side effect of the Fentanyl and it became unbearable.
I needed to come off the Fentanyl and find an alternative painkiller. Little did I know that I had become tolerant to the medication so having weaned myself quickly from 25mcg to a 12mcg patch and then cold turkey, I started the long, painful and exhausting journey of withdrawal.
I am 5 days into full on opioid withdrawal and it’s hell on Earth. I have suffered with insomnia, cold sweats, restless leg syndrome, shivering, sneezing, coughing, diarrhoea, stomach pain, anxiety and fatigue.
The absolute worst time is at night when trying to sleep. I have gone through every single pair of pyjamas I own and they were all soaked through. I’ve had to change my bedding several times. I have slept roughly 3 hours the first night, 4 hours the second night, 3 hours the third night and so on.
I have read so much on withdrawal methods and I decided not to go down the Benadryl route (for the sweats and chills) as it is known to make restless legs worse in some people – and I’ve had enough stress to deal with.
I’ve just got back from seeing my GP who has given me a script for Beta Blockers, to help calm the anxiety and the night sweats. When your body needs to heal, it needs sleep – and if you’re dithering and sweating, you’re not sleeping well and you’re not healing; so I’m looking forward to a small amount of respite and hopefully more than a few hours sleep interrupted by having to strip off my sodden pyjamas and sleep naked (which I hate!).
As with most things in life; it’s a process. I’m stubborn and I’ve taken the ‘fuck it’ route and gone pretty much cold turkey after just a week of weaning. I wanted to get it over and done with. I’ve got what I asked for and I’m paying for it.
So, yeah, that’s a brief description of my latest health problems. This is just another part of chronic illness that people just don’t hear about. I hope it reaches someone who has judged another without knowing all the facts.