It’s also not just ‘pain’ but the compounding impacts on mental or physical health & stress responses
I think that’s the thing that‘s hard to get across
1. It’ll help me feel less utterly depressed about once again being trapped by pain
2. I think it’ll help others, even if the pain you live with isn’t as profound, all of this applies no matter what your personal pain scale looks like
I regularly work well day to day even when my pain is 4-6/10
It’s when my pain starts to creep up to 7,8,9/10 that I start to get really sever systemic symptoms that limit me even more
That’s when I know things are spiking out of control & unless I can pull it back it’ll be 10/10 in no time
Then there’s the cardiac response - either pounding/tachycardia or worse - bradycardia (slow heart rate)
This is why pain management and pacing is SO important. Not just for quality of life
Anyways, she explained it to me like this:
The nurses saw it all though - the vomiting attacks, the BP spikes and drops
I cannot believe how much I went through without proper pain care - dislocations, tendon ruptures, severe ankle sprains, internal bleeding >
Ever since that anesthesiologist took the time to educate me so not only could I manage my pain myself, but I could advocate and educate other doctors my life has been forever changed.
Today I have a whole toolkit for managing my pain at home that includes everything from supplements, creams, heat, TENS, orthopaedics, ergonomics, to, yes, low-dose opiates
And even so, I can’t control it all.
There’s a difficult thing here though - I’m also autistic with ADHD
But! I do what I can!
I moved to Naproxen (Aleve) most often used for arthritis but works for others - higher strengths available Rx
High dose naproxen worked amazingly for about 4 years. It was a god send (together with Gabapentin - an old anti-epileptic that works on central nervous system pain signals)
After I was healed we tried Diclofenac which is also available with a different kind of stomach protectant
Then I started having the anaphylaxis :-
I have been taking NSAIDs heavily since I was a kid. M says in hindsight it should have been obvious I had an underlying condition 😒
SO, it’s not surprising my body eventually rejected this class of anti inflammatories by the time I hit my mid 30s
And don’t worry about immune stuff:-
It’s also why I’m probably allergic to paracetamol/tylenol - I took it like clockwork from as young as I can remember even in baby/liquid form (Calpol!)
Epsom salts are magnesium and when you’re in a hot bath your skin can absorb it and deliver it more directly
Which reminds me to clarify - the creams such as diclofenac gel (Voltaren) or even camphor/pepper ‘natural’ ones like tiger balm will only work on problems close to the surface of the skin - so muscles/joints without too much padding
I wore ankle braces much too much to begin with and it was a huge effort to rehab
At 6-7/10 I also use heat as much as possible. Icing is a BAD idea unless it’s for a short time immediately after an obvious injury
Only for 10m at a time.
These days I actually use electric heat pads!!
But I’m a huge convert to electric - softer heat, you can turn it up/down - it wraps to your body - portable - instant - comfy - super light
I’d be keen to get portable ultrasound at home now that they’re available but they’re $$ - in Physiotherapy offices they’ve been good for healing my tendons when I tear them
I’ve heard of some types of EDS it works well for too - largely people with hypermobile with primarily joints symptoms
I was desperate for something to work last year
So I got desperate. I believed the doctors that told me it’d help address not just the spasming but the damage in my fascia. They were convinced. They were horribly wrong.
I went every week for months
In hindsight I should have realized they didn’t know and they were wrong - my first session in my shoulders and neck (my highest issue area) injured me and caused a flare that took weeks to subside
SO - trigger point injections work for a lot of people, but if you have fragility, be cautious and check in
I wouldn’t advise against because I HAVE heard good things - especially for straight up/typical fibromyalgia. Just be careful
This goes for ANY treatment. Don’t convince yourself if it’s hurting
The artery rupture I experienced? It was spontaneous for me (no trauma) due to my EDS BUT :-
THE SAME DAMAGE AS A CAR ACCIDENT. And it is life and disability threatening. It causes stroke. Think about that.
I now need my opiates around 2-3x per month :-
Compared to much chronic opiate use I’m VERY low & have managed to maintain a min dose - especially considering my EDS is profound
Still, I attribute my ‘success’ here to a few things: I have great tolerance for pain (again, it’s personal and not a failing)
So, that works in my favour
1. A robust, agile, evolving toolkit
2. Understanding the mechanics of pain control
3. Understanding how opiates even work and how dependency and resistance happens
So, I researched opiates thoroughly.
It’s due to negligence and misunderstanding of doctors -
And it’s non-specialized doctors prescribing without much of a thought as to why and how
I’ve seen women cry and scream and be given ibuprofen and... wait for it... a sedative and told to calm
Back to opiates, so addiction happens when people continue taking them even when their pain isn’t very bad, or because they make people feel good (euphoria) and stopping that can be really hard. Especially in certain circumstances:-
Now, aside from addition there’s dependency which is related but different. Dependency happens when you take opiates regularly long term - it gets harder and harder to reduce dosing.
SO it’s really important to control pain for so many damn reasons. So, I stayed on the codeine for several reasons.
I keep my opiates to the minimum I can manage to stay ahead of things.
So, I’ve started to learn if it’s the kind of pain that will get worse
Some days I have to take it every 4 hours to avoid a pain crisis. Sometimes it happens anyway. Some weeks that lasts days, some only 24hrs.
I would give anything to live a normal pain-free life. Anything.
I think the people who choose this are smart in some ways. We deserve to be pain free and do it safely! (And it IS possible with opiates!)
Will I develop an immune reaction if I take it long term?
And how will I regain control after pain spikes and crises?
It’s multi-modal, requires a lot of understanding, education and it MUST be agile and adaptive to the situation.
Shoutout to everyone that lives with this day in, day out. It’s not easy. It takes dedication and self discipline to manage, not to mention serious self education. Our medical systems fail us.
Learn how to spot misinformation and those that prey on us who are desperate.
Most of all, be gentle with yourself. You are amazing.