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Shoutout to everyone who lives with chronic pain. It’s so limiting & exhausting in a way that is truly impossible to describe

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
I’m going to ramble a bit because I think

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 know I only tweet about this when I’m in the middle of a particularly severe flare because that’s the only time it’s possible to even begin to convey. In between those really bad times I cope so I forget.

I regularly work well day to day even when my pain is 4-6/10
That’s my general baseline believe it or not. It’s hard for people without a condition like Ehlers Danlos to believe that’s true, but it is.

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
At my baseline there’s the bad fatigue, but as it creeps up there’s headaches, visual disturbances (clouding, blurring, auras), then comes the nausea. Oh my god the nausea

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
It gets harder to think, impossible to talk (which is compounded by my autistic non verbal periods when overwhelmed), harder to breathe

Then there’s the cardiac response - either pounding/tachycardia or worse - bradycardia (slow heart rate)
Muscle weakness, GI cramping, the list goes on. My system is in such a delicate balance that pain spikes can actually set off many of my other conditions including those in my internal organs.

This is why pain management and pacing is SO important. Not just for quality of life
Something I had to learn, and was taught to me by a very amazing anaesthesiologist during my feeding tube surgery recovery is you have to stay ahead of pain - I was on a fentanyl pump at the time where I could manage my own dosing every 20m as needed. It was vital.
There were other doctors pushing to get me off it ASAP after the first 24hrs because most people don’t need such strong pain management after that type of surgery. I’m not most people - I have a rare disease that impacts everything from my organs to my soft tissues and muscles
This anesthesiologist was one of the few in-patient doctors who understood that. She gently said over and over that we know so little about EDS and in order to create the stoma to my stomach they had to puncture not only the organ itself but everything in between:
The skin, fat layers, muscle fascia, the muscles themselves. In addition they had to go in at a weird angle because all my organs sit unusually high inside my rib cage (most people’s stomachs are below).

Anyways, she explained it to me like this:
As soon as we let pain get out of control (in her mind that’s anything above a 4/10) it gets harder to bring back under control & we need stronger interventions to do so - stronger drugs & non-medicinal tools like heat, ultrasound, TENS, supplements etc. stop working all together
So she kept me on that fentanyl pump until I was down to only activating it once every hour and could move around a bit on my own. Then we switched to oral opiates. The other doctors fought her every step of the way. It was exhausting (on top of them trying to start up feeding)
The story just gets longer and more traumatic from there from an awful nutritionist with zero compassion to doctors on rounds who admonished me for trying to control my pain and not trying hard enough.

The nurses saw it all though - the vomiting attacks, the BP spikes and drops
I lived with severe chronic pain for my entire life before that surgery. I had doctors, dentists, and more deny me anything more than ibuprofen EVEN after surgeries and when my ARTERY RUPTURED. (I’m allergic to paracetamol/tylenol). I’m not even kidding.
The only time I’d ever had an opiate in my life before that was when I was given very low dose codeine for a tooth abscess. Once.

I cannot believe how much I went through without proper pain care - dislocations, tendon ruptures, severe ankle sprains, internal bleeding >
The list really goes on and as I said, includes surgeries and an artery rupturing.

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.
I live with several of what has been documented as the most painful diseases known to modern medicine.

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
Thanks to that education I’m able to understand the mechanics and biology of pain, how to try to stay ahead of it and manage it myself. Without that I would never have made it back to ANY kind of work, let alone full time intensive work.

And even so, I can’t control it all.
I have to constantly try to check in with my body and stay ahead of where my pain levels are at so I can take appropriate action to pull it back. It’s full time, it never goes away and I HAVE to do it.

There’s a difficult thing here though - I’m also autistic with ADHD
It can be hard for me to check in or process what I’m feeling. I also hyper focus really bad - especially on work when it’s super fulfilling and a special interest. I’ve tried setting alarms but that only works if I can even tell if pain is creeping up

But! I do what I can!
If things creep to 5/10 I’ll check my ergonomics - am I sitting properly? Taking enough breaks? Sleeping properly? I may apply some creams (diclofenac NSAID gel) - I used to also TAKE NSAIDs at this point but I now suffer GI anaphylaxis from them so they aren’t an option for me
An aside - I tried all the NSAIDs over the years. Ibuprofen is the one you should start with, but once your pain gets bad enough it won’t do much. It’s very weak.

I moved to Naproxen (Aleve) most often used for arthritis but works for others - higher strengths available Rx
Naproxen was hard on my fragile stomach so it’s available with a stomach protector (PPI) as a combination

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 had a really severe organ infection that started in my uterus and spread to my liver (right after heart surgery 🙃) I was on Ketorolac. Now, this one is actually one of the most dangerous. You have to be dosed up with a high dose injection first, then maintain orally.
It’s extremely hard on the stomach and can be very damaging. It’s not recommended long term because of this. I ended up on it for an extended period (along with codeine 4x a day) because my recovery from that infection & the pain it left was LONG (10 months) |:
After 6 mths the damage to my stomach:esophagus was obvious. I was taking my now regular PPI (for existing GI stuff) 2x a day at the max dose and I couldn’t sleep for the stomach and throat pain - even with the codeine! We stopped it and it took me about a year to heal the damage
I would not recommend ever being on Ketorolac for longer than a couple weeks, especially for those of us with EDS who are demonstrably fragile. It was awful.

After I was healed we tried Diclofenac which is also available with a different kind of stomach protectant
(Encourages mucus layer over production). That worked really, really well for me although there are concerns for anyone with any kind of cardiac condition (me 😬) I was closely monitored and kept on the lowest dose.

Then I started having the anaphylaxis :-
I went back through the NSAIDs to try a few but they all had the same effect. My immune system is just DONE with them forever I think.

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 😒
He confided in me a while ago that when we were first together he was always worried that I basically took the max dose of ibuprofen like clockwork every day. I thought that wasn’t unusual - it’s how I was taught to manage my constant pain which my family told me was normal
Turns out my family has this genetic condition they all refuse to acknowledge because they think it’s some kind of moral judgement or blame game. Go figure.

SO, it’s not surprising my body eventually rejected this class of anti inflammatories by the time I hit my mid 30s
I didn’t mean to go on this NSAID tangent, but I thought some might find it helpful. They’re an incredibly important and useful class of medicines for chronic pain - especially for people with largely moderate (rather than profound) pain.

And don’t worry about immune stuff:-
I have a co-existing immune disorder that makes me prone to developing these reactions. They’re extremely rare.

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!)
SO, getting back to my pain arsenal. As things creep up to 6/10 I turn to thinks like my TENS machine, targeting muscles - this only works if the flare is mechanical (i.e muscular). Some of my pain is internal organ/vascular which is a whole other thread.
Other things that help are also Epsom salt baths and magnesium supplements (magnesium citrate or chloride - the cheaper forms will not absorb and cause GI upset).

Epsom salts are magnesium and when you’re in a hot bath your skin can absorb it and deliver it more directly
This goes for muscles, soft tissues, joints.

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
Oh, bracing comes in around this point if the pain is being caused by tendinitis, tendon or muscle damage/tears or particularly spasming muscles. I leave those until 6/10 pain or if I need to specifically heal an injury because wearing them too much causes you more trouble
Too much brace wearing will cause muscles and soft tissues to atrophy which leads to weakness and instability which then leads to more injury and pain and becomes a cycle. It took me years to learn

I wore ankle braces much too much to begin with and it was a huge effort to rehab
So, I try to avoid bracing these days unless I really need to rest and repair injuries (esp wrist/hand tendons) or unless it impacts my mobility.

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
To heal soft tissues or relax spasming muscles you need BLOOD FLOW. Icing reduces blood flow and can even cause damage itself if applied for too long or too regularly. IT BAD. Took me years to learn this and I did way more damage than good.
Icing is ONLY to reduce immediate inflammation following an injury. Think - visible swelling. So, after you roll your ankle, twist a knee this kind of thing. Or for those of us with EDS immediately after an obvious dislocation or subluxation.

Only for 10m at a time.
Heat is another matter though- be careful of skin damage from too much heat (especially fragile peeps like those of us with EDS) - namely, hot water bottles in particular because they can start off SO HOT.

These days I actually use electric heat pads!!
I used to live almost constantly with a hot water bottle (esp because I also have endometriosis - I know wtf this body is ridic).

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’ve tried many other things over the years in my toolbox but these are the main ones I use now.

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 tried all sorts of interventions too like trigger point injections (both lidocaine and saline). EDS manifests similarly to fibromyalgia when we have muscle involvement (not everyone does). Spasming muscles, damaged fascia, extreme tenderness in all trigger points
And while trigger poin therapy has been massively helpful for people with traditional/typical fibro it was a BAD idea for me.

I’ve heard of some types of EDS it works well for too - largely people with hypermobile with primarily joints symptoms
I’m pretty sure I have a form of classic EDS (it’s not tested for in Canada) - I’m much more fragile than people I know with hypermobile/primary joint types and my hypermobility isn’t as profound - I actually have rapidly stiffening joints and seem to injure way more
I scar really, really badly across every form of tissue in my body and I heal slowly, poorly and bleed a lot. I also have organ and vascular involvement. SO I think trigger point injections actually damaged me really badly.

I was desperate for something to work last year
As my workload has increased obviously so has my pain, injuries and flares.

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
They kept telling me I needed to keep it up for it to work. More medical trauma.

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, we moved to my hips/lumbar/pelvis where I have an old skiing injury and a LOT of instability - my hips and SIJ frequently shift and dislocate. I also regularly injure the tendons that anchor the spinal stabilization muscles to my sacrum - you can literally feel the tears 😐
I went through months of these injections convinced it’d help. I now have more pain and long term injury in those soft tissues and fascia then before I started.

SO - trigger point injections work for a lot of people, but if you have fragility, be cautious and check in
I was desperate and I am very easily sold on things even in the best circumstances

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 one caveat - avoid chiropractors. They are abusive scam artists and there are endless studies showing how damaging their butchery is. Not only that it’s extremely dangerous.

The artery rupture I experienced? It was spontaneous for me (no trauma) due to my EDS BUT :-
This type of rupture when it occurs in MOST people are caused by three things 1. Car accidents 2. Extreme weight lifting and 3. Chiropractic neck adjustments

THE SAME DAMAGE AS A CAR ACCIDENT. And it is life and disability threatening. It causes stroke. Think about that.
Finally, when I get to 7/10 that’s when I take my opiates. Very, very low dose hydromorphone (1mg). It used to be codeine, but again I developed an immune reaction to it after I had to take it full time after that organ infection.

I now need my opiates around 2-3x per month :-
Usually only 1-2 days and only 1-2x a day. When I have a bad flare like I’m in right now that creeps up a bit, or when my endometriosis is flaring

Compared to much chronic opiate use I’m VERY low & have managed to maintain a min dose - especially considering my EDS is profound
Now, some of that is luck and will be out of our control - so if you take more or take it more long term that is NOT a personal failing, I promise.

Still, I attribute my ‘success’ here to a few things: I have great tolerance for pain (again, it’s personal and not a failing)
My good pain tolerance is likely due to the fact I’m autistic and some of us have suppressed pain responses. This is definitely me. Most types of 10/10 pain I just shut down, cry silently and go non-verbal. Most people would be yelling and screaming.

So, that works in my favour
(There are some types of pain - notably my GI anaphylactic attacks that make me yell, hum, cry loudly etc. Organ pain is generally an extremely painful ATTACK type pain and that again is more about how my autistic self processes it than anything. It’s the worst pain I live with).
Largely, though, I attribute my success with long term opiate use to having:

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
To elaborate on 3 - again, probably because I’m autistic? I research EVERYTHING thoroughly. Many years ago, starting with my discovering I had EDS, ramping quickly up with my first stroke I learned to read medical research papers and how to research medical stuff properly online
It’s a really complex process of learning to understand what a scam and misinformation looks like, what applies and what doesn’t, and also understanding medical jargon, biology, chemistry, neuroscience etc. It’s complicated. Helps that I always had interest and scientific past.
Like most things not everyone is able to, and I attribute a lot of misinformation on medical and support forums to misunderstanding of medical papers and literature. This is another tangent - but it’s also why shit like naturopathy & chiropractics, anti vax etc. THRIVES online
That’s OK, and again, no judgement. We all have different brains and talents! Still, it helped me a lot and why I tend to write these massive threads in the hope I can help others on their journey with pain and disability.

So, I researched opiates thoroughly.
I know how most of them work in terms of biology/neurology etc. I know a lot of the benefits and pitfalls of the main kinds - why fentanyl is so dangerous as a street drug and reserved for emergencies, surgeries, and terminal illness for example.
I have researched thoroughly how poor prescribing practices can lead to addiction - it’s not the fact they’re used for pain outside of clinical settings. It’s not the fact they’re used for chronic pain.

It’s due to negligence and misunderstanding of doctors -
Negligence in terms of not explaining ANY of this shit to their patients. This idea that patients couldn’t possibly understand or grasp even the most basic part of the science or methodology

And it’s non-specialized doctors prescribing without much of a thought as to why and how
Opiates are more likely to be prescribed Willy Nilly to men. I’ve SEEN it happen. Remember how I went years without proper medical pain treatment even for some SEVERE shit? Even when I’ve cried and BEGGED for help with my pain in emergency situations?
WELL, in all my many times in the ER and as an in-patient I frequently just saw men straight up ask for some morphine without even much of an explanation and.... BE GIVEN IT

I’ve seen women cry and scream and be given ibuprofen and... wait for it... a sedative and told to calm
That’s a whole other thread.

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:-
Usually when patients are just told to take a dose every 4 hours every day and then they’re supposed to just stop without even really reassessing their pain levels. This is only really good in short periods for acute (short term pain), post surgery, injury etc.
Now, long term this can be OK to stay ahead of profound pain too - remember we have to stay ahead of it to manage it. But what needs to happen is we need to check in - if we push a dose back or start to skip do pain levels climb or do they stay the same? That’s when we reduce.
This is the thing that’s rarely done, even in chronic pain management.

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.
This also leads to tolerance issues which means we eventually have to increase the dose to get the same amount of effect (or pain control). Dependency isn’t addiction. It’s complicated and I don’t want to oversimplify.
Roughly it’s about being unable to reduce the dosing because it affects pain tolerance levels, as well as things like central nervous system pain spikes while reducing (even if nothing mechanical is causing the pain) so, it’s tricky.
It’s one of those things that has to be weighed when considering long-term, regular opiate use. Again, it’s rarely, if ever communicated to patients. For many stigmas but not least the lack of trust or compassion in patients being able to understand.
SO, remember for a while I was put on codeine around the clock? It was really necessary as I was in a LOT of pain. In the first few months I kept trying to reduce the dosing on my own because I knew all this science behind opiates.
Here’s the main reason I personally work to avoid dependence and tolerance - opiates are the ONLY thing that help me in a pain crisis. They’re the only thing that pulls it back under control. I have a pain crisis at least once a month, sometimes more. It’s terrifying and awful.
I wouldn’t wish pain that protracted and severe on anyone. The number one reason to keep pain under control (which I forgot to mention until now): when pain spikes it produces all those systemic issues BUT ALSO it can become permanently turned on in the central nervous system.
I have that in several parts of my body now and it’s awful. Permanent nerve pain feels (to me) like someone has cut away all my skin. It’s a special kind of tortuous pain. It also leads to pain in those same areas of the body triggering higher alarms and feeling worse than it is
So, I mentioned my chronic shoulder neck injuries being the worst mechanical pain I face - that is steadily getting worse with time as I age. Partly that’s because of scarring and EDS is progressive (I get more fragile & muscles get worse with time) but it’s also CNS response.
I know that the more pain crises I experience in that part of my body the worse my brain thinks the pain is whether the mechanical problem is worse or not.

SO it’s really important to control pain for so many damn reasons. So, I stayed on the codeine for several reasons.
I didn’t want permanent organ pain, especially in my liver. The worst thing is I was diligent, but I still ended up with this. There’s one spot of my liver that has small flares of that exact pain for no reason. It’s probably my central nervous system. Yay.
SO, I kept trying to spread my codeine doses out as much as I could as long as the pain was tolerable and around 4/10 or could be managed with heat. I eventually was able to come off the codeine which became urgent because it started to trigger migraines (LOL)
For a while I experienced increased tolerance and needed higher doses after things like surgery (usually my central line replacements), but I tried to keep to the science of staying ahead of the pain.

I keep my opiates to the minimum I can manage to stay ahead of things.
I wait to take the hydromorphone. I’ve had couple doctors and nurses tell me I wait too long - they’re right sometimes. During pain crises I’ve waited and I end up needing a double dose to pull it back.

So, I’ve started to learn if it’s the kind of pain that will get worse
Some pain stays steady but some I know will progress through the day. For that I might take the hydromorphone earlier at 6/10 levels.

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.
There’s totally the temptation for me to just stay on opiates full time. We shouldn’t have to live in pain - it’s not fucking normal. It’s a privilege to live without it. An unspoken and ignored privilege.

I would give anything to live a normal pain-free life. Anything.
So, yeah, part of me has thought about opiate therapy every day to keep my pain levels even below 4 or 5/10 which is my baseline these days.

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!)
For me, though, I never know what will happen with my body - will I need more surgeries? (High opiate tolerance makes sedation and pain control harder)

Will I develop an immune reaction if I take it long term?

And how will I regain control after pain spikes and crises?
I’ll finish up this thread now - pain control is so stigmatized, but it’s incredibly important beyond quality of life or our ability to be ‘productive’.

It’s multi-modal, requires a lot of understanding, education and it MUST be agile and adaptive to the situation.
This thread what, again, 4x longer than I expected, but it’s a complex problem!

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.
Also shoutout to everyone struggling to access this kind of care - it took me decades. I had to learn how to FIGHT for my right to pain control. I had to self educate, and demonstrate that education and understanding before doctors would trust me and give me regular prescriptions
This is also part of what factors into my low usage- my GP is great but Vancouver is an opiate crisis epicentre and the governing bodies put pressure in the WRONG places - on doctor’s prescription pads and habits, not on education, monitoring safe usage, or the STREETS
I’m hyper aware that if my usage increases dramatically that my amazing and compassionate doctor may have her hands tied and I’ll be cut off from this life saving treatment. (It IS life saving, believe me - I would not have made it through my 30s without it).
Even having said all this I have privilege that gives me access others won’t have - I’m white, I’m articulate, I’ve self educated, I’m middle class, I know how to navigate the system. All of these go in my favour for accessing medical care; not least the restricted kind.
So, stay ahead of your pain where you can, however you can. Figure out the things that work for your toolkit, and at what level they work.

Learn how to spot misinformation and those that prey on us who are desperate.

Most of all, be gentle with yourself. You are amazing.
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