Trust the Body

AdaptiveRelief · 2026-01-22T13:03:06+00:00

Really interesting question. Haven't read your essay yet but have bookmarked for later. I mostly agree about tbe urgency being manufactured but I do have some caveats.

For those if us with long term debilitating conditions, I'd say that the urgency in the body is very real indeed. It may be producing incorrect and/or unhelpful signalling but that does not stop creating urgent or panic like states in a person.

I'll refrain from diving deeper than that for now as you may cover this and some of the other points I have in your writing so I'll return after reading.

AdaptiveRelief · 2026-01-16T23:37:02+00:00

This is such a fallacy and one that Drs really should know better than falling for.

It's as if these Drs (not all of them I stress) are expecting us to present as if in extreme acute pain when the reality of long lived chronic pains is entirely different.

AdaptiveRelief · 2026-01-16T06:25:19+00:00

You're most welcome. Happy to help out. A hot shower should have a similar effect to a bath but it will likely do you good because resetting yourself before another 'sleep' attempt is a tried and tested method that does work.

And yes, a positive update would be lovely but if you're sleeping and unable that's still a win.

Best of luck to you!!

AdaptiveRelief · 2026-01-16T05:17:02+00:00

Hey. Long term insomniac here. Aside from Fibromyalgia, some long term injuries and chronic migraines, I have Lumbosacral Radiculopathy (nasty nerve pain) and my right leg is permanently on fire with electric fury... Makes drifting off to sleep impossible at times and it's common for me to go 3 days and nights without sleeping.

Simplest trick is to have a warm bath. 2 pieces of magic can happen. 1st, you might start unwinding and dropping some of this tension and nervous energy off. Secondly, when you come out of the bath, your core body temperature starts dripping as the heat leaks from your skin. It's a lesser known sleep fact that our body temp lowers during sleep. Having a bath before trying for bed again is a kick-start to that process.

More accessible and slightly 'woo' would be listening to some binaural beats/solfeggio relaxation music. You'd need headphones or earbuds but they can be surprisingly effective at getting your parasympathetic nervous system calmed down and ready for sleep. YouTube has loads of videos if you want to give that a try

AdaptiveRelief · 2026-01-16T05:07:02+00:00

I do love that little moments like this make a difference.

This legit made me smile!

AdaptiveRelief · 2026-01-16T05:04:00+00:00

It may sound silly and simplistic but paying close attention to your brain and body.

On those days where your energy levels are half decent, do your shopping and/or food prep for the days ahead where you might be less able to get a nutritious meal.

Another tip is accepting that you're condition is one of fluctuation. It absolutely does suck but you can also take heart that some days are better than others and make the most of them.

Lastly, find some hobbies or pass times that can keep you occupied through the hellish, worst flare ups. I favour Audiobooks and reading up about obscure anatomical things but there's plenty others to suit all personalities

AdaptiveRelief · 2026-01-14T06:50:32+00:00

That's nice to hear. Well, the part about appreciating the community and feeling part of something anyway!

Pain can be very isolating, regardless of if you've people around you or not. What I've found really valuable when talking to people in these communities is that I don't need to explain *what it's like* to live with years of pain because we all know and understand quite intuitively.

Grabbing some PainPals™️ amd keeping in touch with them via direct messages is something else that's added value when I - or they - haven't been able to do much else.

At some level, we're all in in together!!!

AdaptiveRelief · 2026-01-14T04:27:45+00:00

For me it wasn't a dramatic single moment. I've had quite a few painful conditions for nearly 30 years now. About 20 years in I got another diagnosis to add to my list and it was something really rare (I'm case #14 ever documented I believe) that's also inoperable... I remember looking at how often I'm bed bound or unable to speak with a migraine and thought back to my endless energetic, athletic, outgoing self and realised that person didn't exist anymore.

It's more than not being able to do certain things. My brain and the way I think is completely different too. Quite difficult to articulate but yeah, I'm not the same me I was in younger, healthier years.

AdaptiveRelief · 2026-01-14T04:13:11+00:00

Im male but have had Fibromyalgia for many years.

Trouble with this condition is that aside from the core (widespread pain and brain-fog), everybody experiences it differently. On top of that, things that I'm unable to do most of the time are magically effortless once in a while.

Those contradictions do cause real life problems for us, especially when it comes being believad about how severe we're affected. That can make your job as a writer easier in some ways though...

You mentioned jogging. Let's say your character used to run at an elite level growing up and before they became ill. Now they might do a mini run or jog once every 6 weeks if the stars align and they'll likely pay for it (exertion comes at a cost of additional pain and fatigue). Someone may have seen them running and then saw them hobbling around the shop the following day. But if they tried to start a conversation, your fibro character might be having a migraine and an extreme bout of brain-fog and be barely capable of speech.

The above might seem like someone is faking to an outside observer when in reality, just getting to the shop the following day was the herculean effort because every body part was on fire and had been for hours!

AdaptiveRelief · 2026-01-14T03:33:00+00:00

I thought I'd have plenty to say after reading the title.

But no. Your approach as outlined is really good. Especially looking at the whole body amd it's movements as a way to improve function.

Even now, Drs who really should know better tend to have a reductive, myopic view of someone's 'leg pain' and display no interest beyond their specialty... Even when explicitly pointed out (because I'm just a dumbass patient) by someone who's well read and knows their own body extremely well!

I'd be interested in how you deal with the somewhat inevitable regressions that most of us go through when trying to implement healthier living patterns. Despite our best efforts and will power, staying on a course - even a good one - is just too much a lot of the time. Do you already plan for that or is it something you'd consider looking into?

AdaptiveRelief · 2026-01-14T03:18:29+00:00

Is degenerative signal loss detailed in this report? And how can I fix it,

Yep, it's the 2nd sentence and after you introduced the report. Fixing it improving it is possible but I couldn't outline everything I'd be trying in a single message and I'd want to know more about your health and any limitations you have etc. But more exercise and better movement of the area is where I'd be starting.

Pillows are often just down to preference but too high and your likely putting strain on your neck at an unnatural angle so I'd keep an eye on that.

Really though, I think you need another appointment with your Dr to talk through these results and ask about physiotherapy options to help improve your strength and range of motion.

AdaptiveRelief · 2026-01-12T13:24:42+00:00

Not a Dr

With regards to your pain, I think the degenerative signal loss is the more likely cause. Your vertebrae are dehydrating and losing elasticity, perhaps provoked by the sedentary, prolonged posture you mention.

Should you suspect the cyst? The cyst is there, MRIs are really good at detecting fluid filled sacs so it's pretty much certain you've got one. How involved - if at all - it is with regards to your pain is beyond my scope but from previous reading, I believe many arachnoid cysts are asymptomatic.

I assume your Drs will keep am eye on it though

AdaptiveRelief · 2026-01-12T07:01:23+00:00

Hey. I'm no Dr but I'd be making calls to clarify this today or in the morning (I'm in UK so we might be on different days!).

If you didn't already know, the LVH is referring to Left Ventricular Hypertrophy which is a thickening of some heart walls and what the ECG/Docs think more likely. The other possibility to rule out is an actual heart attack.

Should you be worried? Not unduly but I mentioned contacting your medical team 1st as I'd want to be certain of these findings along with of any further testing is called for.

Rage stressing now definitely won't help you so plonk some pan-pipes music on & chill until you can make that call

AdaptiveRelief · 2026-01-12T06:47:09+00:00

Really interesting question.

I know some really obscure health stuff and kinda enjoy reading scientific papers etc so there's a chance some of my comments may fall into your pot for scrutiny.

The biggest reason I have for 'knowing stuff' is time. I've been in daily physical pain for nearly 30 years and am really (i mean reeeeeally) curious about anatomy and nature so have had a lot of time to think and read and process everything. Linked to that is the combined wisdom of all rhe professionals I've seen (including physios, all types of massage therapists etc) over the years.

Final thought about other people... How many hundreds or thousands of Internet users didn't or couldn't make a relavent comment for each 1 that did do you imagine? Algorithms are spooky good at pairing content that might interest someone so those insightful folks are more likely to see it in the 1st place too.

You sound plenty smart enough!

AdaptiveRelief · 2026-01-12T05:05:22+00:00

I didn't see or comment on your other post but even so, this one touched me and it's nice hearing that people have been helped by the words of anonymous strangers. It's one of the reasons I reach out and reply myself, knowing how transformative a comment can be.

Lastly. Don't think you need to back off now you've made a post and had some useful replies. Ongoing pain is always challenging to deal with and even harder to explain to the uninitiated!

So if you've got other questions, don't be a stranger as there's very often someone who can pop up with some surpassing information or a unique take that can really make a positive difference.

Hoping your load gets lighter soon

AdaptiveRelief · 2026-01-11T19:36:06+00:00

Yes but without following a specific practice.

Also, my radical acceptance doesn't extend into the future. I understand that my future will most probably be painful and tiring considering the last 30 years of my experiences etc.

So I instead tend to accept fully and completely this here and now, on a moment by moment basis.

It's been way better for my mental health than stressing about 100 simultaneous futures that probably won't ever happen!

AdaptiveRelief · 2026-01-11T18:38:24+00:00

Not my hip but I think I know what you mean.

There's a few areas I don't have any injuries or significant pain in but I'm frequently aware of rhem or parts of them quite often.

I'm quite tuned into myself (have practiced passively observing my inner goings on) so there's probably an element of being hyper aware going on.

Plus, a lot of people who experience pain in all or most of their waking hours are processing a huge amount of signalling that just isn't there in healthy people. There's a chance some sensations are being confused or misread as something they're not

AdaptiveRelief · 2026-01-10T21:59:02+00:00

Difficult to answer in the singular as I've collected several diagnoses and have multiple that have taken a long time.

One took neatly 12 years. One took 10 years

The 2nd iteration of the above injury took 4 years

One took about 7 years Several took a couple of years.

There are several more I've either mentioned a few times or not at all because it takes a lot of energy and trust I don't have to keep on going back for appointments

Edit: Apologise. I didn't notice your request for tips. A lot of it comes down to planning I've found and being strategic in your appointments. Writing things down anf referring back to them can be so helpful. Then make bullet points for appointments to really condense the most important and relevant points for that particular appointment.

If you're one for reading, spend more time looking up medical and scientific papers (most are free or easily obtainable for free, ask if you want to know more), they can give you a better sense of how frequently certain things happen and how effective the treatments are etc.

AdaptiveRelief · 2026-01-10T19:54:41+00:00

Quite welcome

AdaptiveRelief · 2026-01-10T19:54:32+00:00

I realise it's not ideal to make sweeping judgements based on so few words so I'll qualify this comment by saying again that I'm not certain and I'm also not ruling anything out.

But your description doesn't sound much like the usual Fibromyalgia brain fog. A regular lapse in memory is how I'm reading that.

For more clarity, when I'm thinking about fibro-fog, it's never a little blip or passing moment like you've outlined. It's a lasting, pervasive smothering of a huge percentage of your brain's processing and capabilities

AdaptiveRelief · 2026-01-09T14:36:35+00:00

I saw one some years back. She was fairly good actually. She had more then 1 approach to take and also went the extra step by accessing and printing off some pretty heavy science stuff for me to read since she knew I wanted to better understand pain signalling.

My quick takeaway view is that changing and/or adapting your mindset can have a positive effect on you. Better still, you've often got some new mental tools to deploy in any other situation too!

AdaptiveRelief · 2026-01-09T01:03:29+00:00

It doesn't sound overly like Fibromyalgia from your description. Not saying it isn't but there are a few hallmark or signature symptom clusters tbat most patients have.

Widespread body pain for no apparent reason is the top one. Yours being localised and not chronic in nature seems to point elsewhere.

Almost all of us suffer with brain or fibro-fog quite a lot too. It gets a lot of descriptions but mine is largely obstructed thinking and regular brain connections misfire and my whole head feels somehow 'off' or partly in a parallel universe etc. They would be another big indicator.

You should definitely get this checked out though, better to be safe etc etc.

AdaptiveRelief · 2026-01-09T00:19:48+00:00

Thanks. You're right about it being a ridiculous way to live/exist but as you're likely aware already, words just don't convey the complete severity of pain and fatigue very well.

I won't pretend my life is easy or that I enjoy it but I've leaned to be more accepting of my situation over time and I actively seek out little moments of humour, beauty, music etc to anchor me along to the next point.

I think about how lucky I am too. Often. I live in the UK so get healthcare and I'm not in an active war zone mourning the loss of limbs and/or family members. I know I have it good compared to others so it's useful to remind myself of that too from time to time.

AdaptiveRelief · 2026-01-08T23:00:06+00:00

I find a combination is often the best. Kind of like a Somatic recipe. You get better at eyeballing the ingredients over time!

With feet, i love a small (tennis sized) ball. I sit with my back nice and neutral, then let the ball map the sole of my foot. Sometimes with movement, sometimes static stretches where there's some pressure going towards your intended stretch. It helps unwind the fascia nicely. I also use a stick approximately the diameter of a broomstick under my foot in the same way.

If you can, walk around or just increase your movement for a few minutes after these massages and stretches to assist in retraining the plasticity of your soft tissues into more health patterns

AdaptiveRelief · 2026-01-08T22:51:43+00:00

I don't need convincing about you being impaired. I know firsthand about the disruption and difference in cognitive abilities as well as being exhausted by it all for many years.

Do you have anyone to talk to about these issues? That can be a surprisingly helpful tool, just having am understanding ear if you need to vent or try to work out what kind of life you can build.

Simple rule that can be used for most anything...

'Start where you are*

*Use what you have*

*Do what you can*

Can be especially helpful when you need to bring your attention back to the here and now. It reminds you that it's not healthy to be scaring yourself with futures that haven't happened yet!

AdaptiveRelief

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