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tatters
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PostPosted: 22:54 - 07 Jun 2021    Post subject: Living with pain Reply with quote

Hi all,

I have not been very active on BCF for the last few years, no proper motorcycling since moving to Canada most of my time has been taken up working and doing the whole having a family thing.

Last December l had a spine disc herniation at L4/L5 from heavy lifting at work which lead to Cauda Equina Syndrome. Some of the worst nerve pain l have ever experienced along with losing of control of my legs and bladder/bowels. Luckily l had emergency surgery within a reasonable amount of time, going past 24hrs you are very likely to end up with severe permeant damage paralyzed from the waist down/pissing yourself etc.

After the surgery l found out that my (Ex)employer did not sign me up for disability coverage when l started my new job earlier in the year which was part of the job package, so my required 3-6 months off work for recovery turned to be just 3 weeks (max holiday entitlement here).

I also tried to apply to the workers compensation board which is a government insurance that covers workers for injury's (all employers have to pay a percentage of payroll by law to WCB, The law also doesn't allow you to sue employees for injury's as WCB protects them).
WCB refused to accept that my injury occurred at work and blamed by injury on natural degeneration/wear and tear (they came to the conclusion without even looking at my medical records). I can not fight there decision as there decision is final, and in turn was left with a large bill for the ambulance and aftercare medical fees to pay (So called free health care in Canada does not cover as broadly as the UK NHS).

Six months on l have nerve pain in my legs and back, which will l have to deal with the rest of my life along with never doing such activities as riding a motorcycle again or getting a good nights sleep.

Any suggestions or experiences with living with a f*cked up body?
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mentalboy
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PostPosted: 05:16 - 08 Jun 2021    Post subject: Reply with quote

Plenty of experience but not much in the way of advice.

In my case it was excruciating pain in my Sacro Illiacs which started when I was 16 - later diagnosed as Ankylosing Spondylitis - shortly followed by a 60' lead fall which popped a disc somewhere in the L3, L4 region and gave me all sorts of gyp for years.

As for advice, I'm a pig-headed sod so I tried to carry on as best I could, sans pharmaceuticals.
Result - finally saw a chiro for the back about 5 years ago (by which time I was in my late 40's). He reckoned that I have the biggest muscle pack around my spine that he's ever seen, presumably my body's compensation for the buggered disc. His wrench and jerk did help, as did the acupuncture he did for me.

The AS was a bit trickier, the Sacro Illiacs would get flare ups, guaranteed with the first storms of Autumn or 24 hours before the barometer took a large drop, over the years it has gotten less troublesome, although I did have some issues with flare ups in my ribs in my 30's and 40's. Nowadays it is unusual to get a flare up, but the associated Iritis is always fun when it rears its ugly head.
I was told by the specialists that the condition would burn itself out if I just kept active and took their drugs. I did keep active but chucked away the meds, most people by my age are now fucked with movement and the drugs have had the added bonus of trashing their liver and kidneys, stomach ulcers etc etc.

As old age races towards me I find that my feet, ankles, knees, neck shoulders, elbows, wrists and fingers are all suffering from years of abuse, but it comes and goes, fortunately never all at once, and the hot weather here seems to help.
Dislocated my left shoulder a few years back, stupidly put it back myself (that's a whole different story!!) rather than getting a quack to sort it out, now the bloody thing pops in and out on an almost daily basis, even the graunching back into place is a painless routine now - why the fuck does it never give any grief when it pops out only when you decide it needs to be working again???

TLDR: I kept active and didn't do the drugs, YMMV. You have to find what works best for you and that could take a bloody long time, or never.

Best of luck.
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JackButler
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PostPosted: 07:11 - 08 Jun 2021    Post subject: Reply with quote

Dr. BCF will see you now . . . . ?

In the bike world you will never be far away from someone living with debilitating injuries.

There are only 2x things, possibly 3, that work for my undiagnosed back pain issues.

When the pain is crippling I take a low dose of Prozac. Almost impossible to get on prescription these days 'cos the Docs no longer get trips to Las Vegas medical conventions for their trouble. I carry 2 10mg tabs in my wallet & the relief is almost instant. I was told to try it by a chap who suffered life changing injuries 40+yrs ago & it works for him & it certainly works for me. It is also highly addictive & you should only consider it if you can handle taking a one time dose to see if there's immediate relief, you really do not want to be hooked on it.

My other recourse is cannabis. The proper stuff. Almost everyone I know who suffers aches & pains is now on weed. If you have a problem with cannabis being a far more sensible option than anything big pharma can throw at you then bring it on, I know the subject extensively.

The 3rd way is physio. I spent £1000's to discover that most chiropractors really are nothing more than qualified & knowledgeable quacks. Eventually I was recommended to a very well respected sports physiotherapist who wrote me a course of regular exercises & stretches. This does not help me when I suffer an episode, but who knows how much more frequent & painful those episodes would be if I didn't . . . .

Good luck to anyone who may be suffering & I hope it takes a lot less time, effort & £money to find what works for you than it did for me.
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UncleFester
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PostPosted: 07:55 - 08 Jun 2021    Post subject: Reply with quote

Amazing how much time you seem to have had to be a billionaire, retire at <30 and manage a chronic debilitating medical condition. Perhaps you're confused from smoking too much wackybaccy.
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JackButler
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PostPosted: 08:05 - 08 Jun 2021    Post subject: Reply with quote

UncleBFester wrote:
Amazing how much time you seem to have had to be a billionaire, retire at <30 and manage a chronic debilitating medical condition. Perhaps you're confused from smoking too much wackybaccy.


I never let it get in the way.

What do you blame your failure on?
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UncleFester
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PostPosted: 08:17 - 08 Jun 2021    Post subject: Reply with quote

Oh when trying to compare oneself to you, it's such a challenging task to pin down ones own failures. So many to choose from - not dissimilar to expecting you to be able to pin down which of your mental illnesses is affecting you today.

Can't decide if you're the Phoenix of Pol or the reincarnation of Howard Marx.
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Polarbear
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PostPosted: 09:27 - 08 Jun 2021    Post subject: Reply with quote

While no where near your level of damage I suffer from chronic leg pain due to my 30 year old skin grafts from when I was involved in a boiler explosion breaking down. It seems it's a problem easily fixed if it's a small area but if it's your whole body from the waist down removing all the grafts would probably kill me with no guarantee they could get new ones to take if it didn't.

Anyway, I've lived on painkillers (and alcohol when it gets really bad) but one thing that was suggested that really reduces the pain for me was one of those machines that stimulate the leg muscles. The problem with me is it's a two edged sword as while it reduces pain it causes increased blood flow and where my grafts have separated, gushers of blood erupt(I'm on thinners which doesn't help) so I have to bind said grafts up tightly before I use it.

I gave up with some of the painkillers they gave me as I was a drugged up mess but I'm lucky enough to be at the time of my life (old) where I don't have to work and only wifie sees me cry when it gets too much. Embarassed

Good luck. Maybe time to come home and let the NHS look after you but with covid they are struggling like fuck even now.
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UncleFester
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PostPosted: 10:02 - 08 Jun 2021    Post subject: Reply with quote

Some musings.

Tried Salt Caves?

What happens when you go somewhere that isn't cold and damp?
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stinkwheel
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PostPosted: 11:54 - 08 Jun 2021    Post subject: Reply with quote

My Tai Chi teacher practices something called Hellerwork for chronic injuries and pain.

Like with the Tai Chi, there is a certain amount of woo-woo involved but there is also a reasonable degree of actual sensible, effective stuff.

I should add that my Tai Chi teacher is a retired but qualified midwife and physiotherapist.

Hellerwork is about fascial release and alignment. Effectively trying to keep the skeleton aligned and the different muscle groups moving freely over one another (trapped nerve? Where is it trapped, why is it trapped there, what can you do to untrap it?). Also includes a degree of councilling and mind work, yes it's sore, yes it will always be sore, how will you deal with this?

The Tai Chi itself is also very good for low load mobilisation and alignment (with the added benefit of bringing you closer to becoming a kung-fu master).

If that's all too woo-woo for you, see if you can find a good theraputic pilates practitioner (ideally one who is also a qualified physio). Pilates was designed for recovering injured servicemen.

Remember, the only effective, clinically proven treatment for back pain is exercise.
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Robby
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PostPosted: 11:54 - 08 Jun 2021    Post subject: Reply with quote

Is this something that can be fixed (or at least mostly-fixed), or is it a permanent condition with no hope of recovery?

If it's something that can be fixed, keep doing all the stuff that can fix it. Whilst it isn't the same thing, I slipped a disc last year and spent 6 months in more or less constant pain. When it flared up it was worse than a broken bone. The only fix was taking the anti-inflammatories, topping up with codeine where necessary, and doing the physio exercises every day, which hurt even more.
Now I'm more than a year on from doing the injury, it still hurts a bit, I'm still doing the physio, it is gradually fixing itself. I'm also a lot more flexible than I used to be.

Other bit to remember here, seeing as you're about my age. You're not 18 any more. When the medical advice says it takes a year to fix, it takes a year to fix. No more youth-based shortcuts and magically getting better. Walking a couple of miles a day helps too, but don't overdo it.

Alternatively, if this is a long term thing, then over here the NHS provide pain management counselling. Generally written off as bollocks before people try it. Getting a good psychiatrist is also useful, because your mental health is going to beat you even harder than your physical health.

In brief, there is no magic fix. There are no shortcuts. It's either slow and painful recovery, or learning to accept it. Professional help is useful for both.
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Fat Angry Scotsman
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PostPosted: 11:56 - 08 Jun 2021    Post subject: Reply with quote

UncleBFester wrote:
Oh when trying to compare oneself to you, it's such a challenging task to pin down ones own failures. So many to choose from - not dissimilar to expecting you to be able to pin down which of your mental illnesses is affecting you today.

Can't decide if you're the Phoenix of Pol or the reincarnation of Howard Marx.


I am 100% convinced he's a meme character of someone else on here. I can appreciate the roleplay though and look forward to seeing how it develops.
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chickenstrip
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PostPosted: 12:23 - 08 Jun 2021    Post subject: Reply with quote

Over the years, I've found a few things that help, nothing that solves the problem.

Weed does indeed help a lot with my aches and pains. Whether through just helping me to relax or some true pain relief mechanism, don't know, but it seemed very effective. Does Canada allow any of the byproducts available in some places now, if you don't want the THC effects? CBD oil or that kind of thing? Could be worth a try, with no nasty side effects as far as I'm aware.

Exercise. Stretching, building core muscle. This has helped me a bit, but not a cure-all. Starting light, obviously.

Walking. Yep, found it helps, again, not a cure-all, again starting gently.

Distractions. Reading, playing guitar, whatever you can get really absorbed in.

Pain killers. Minefield, because of side effects. I've kept my usage to an absolute minimum, and use it only when things are at their worst - often just resting is as effective. Ibuprofen for my back and deep shoulder/arm pain from those injuries, cocodamol for general aches and pains. Over the years I have actually reduced the doses to over-the-counter levels.

I think a mix of things is the best way to think about it, rather than looking for one miracle help. Then it's just about managing it. I still have days where it all seems too much, especially when other things are proving to be trying in life. Sometimes, all I can do is laugh at my predicament, how fecked-up I am.
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MarJay
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PostPosted: 13:32 - 08 Jun 2021    Post subject: Reply with quote

have a few friends and acquaintances with chronic pain and many of them swear by TENS therapy. TENS machines range in price from cheap to expensive, but I'm told it's good to try a cheap one, see if you like it and then try a more expensive one if it's worth it.

I also understand that it's not a miracle cure, and it doesn't get rid of things completely but it makes things more tolerable, as I understand it.
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Fat Angry Scotsman
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PostPosted: 13:41 - 08 Jun 2021    Post subject: Reply with quote

MarJay wrote:
have a few friends and acquaintances with chronic pain and many of them swear by TENS therapy. TENS machines range in price from cheap to expensive, but I'm told it's good to try a cheap one, see if you like it and then try a more expensive one if it's worth it.

I also understand that it's not a miracle cure, and it doesn't get rid of things completely but it makes things more tolerable, as I understand it.


Off the back of this post, I just bought one off Amazon to try out. If it's shite it's only £40. Nothing ventured is nothing gained.
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Tarmacsurfer
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PostPosted: 14:04 - 08 Jun 2021    Post subject: Reply with quote

My spine is degenerating, has been for some time. I have the beginnings of Caude Equina, due to the location and extent of the damage I'm not a candidate for surgery. I've been living with weak legs and unpredictable toilet function for about ten years now and pain for closer to twenty.


First piece of advice, core strength. Having that supportive girdle of muscle makes life much easier. Not less painful as such, but you will be far more capable of doing "things". Normal sorts of things that everyone takes for granted.

The sciatica can be a bitch, most people find there are one or two sleeping/support positions that are comfortable. Mine is laying on my back bent to my left, like a banana. There was a bloke at one of the pain clinics I went to that could only lay down on his front, bent over a swiss ball. As I say, everyone is different so you'll need to experiment.

TENS isn't for everyone. I trialed a very expensive, all singing all dancing kit around 10 years back for an NHS program, the eventual goal was to implant the electrodes into the nerves as they branch out of the spine, sadly it didn't offer as much relief as they had projected so the project was halted.

I guess what I'm trying to say, TL;DR if you will, there's no magic bullet and every spinal case is different. Experiment, find what works for you and diagnose what triggers you. I'm really glad to hear you got surgery in time though, it must be ridiculously stressful with the financial impact and the health implications but you're one of the few that it's worked for. Good luck finding your way going forward Thumbs Up
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Easy-X
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PostPosted: 22:05 - 08 Jun 2021    Post subject: Reply with quote

One of my daughters has all sorts of crumbling shite in her back so I sympathise. The other day her [current] boyfriend said "don't worry, babe, even if you iz quadraspazzed I'd still fuck you."

That's a keeper right there Laughing
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tatters
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PostPosted: 17:12 - 09 Jun 2021    Post subject: Reply with quote

Robby wrote:
Is this something that can be fixed (or at least mostly-fixed), or is it a permanent condition with no hope of recovery?


Nerve damage is permanent with a chance of the remainder of the disc re-herniating again or other discs that may cause additional damage.

Robby wrote:
Getting a good psychiatrist is also useful, because your mental health is going to beat you even harder than your physical health.


This is an additional issue as it been hard for me to accept what happened, along with getting screwed over by the systems that you expect to be in place to cover such events but never think you would ever need to use. I am very cautious talking about mental health issues with medical professionals due to the risk of loosing my firearms license and having my collection seized.

chickenstrip wrote:

Weed does indeed help a lot with my aches and pains. Whether through just helping me to relax or some true pain relief mechanism, don't know, but it seemed very effective. Does Canada allow any of the byproducts available in some places now, if you don't want the THC effects? CBD oil or that kind of thing? Could be worth a try, with no nasty side effects as far as I'm aware.


Its fully legalized here with lots of stores in my city, going to look into CBD oil but need to find if l can get a medical exception if required as a lot of customers l do work for perform mandatory drug testing and treat it he same as having alcohol in your system.

Have been avoiding the pain killers since getting out of hospital as its a route l do not want to go down, big issues here and down in the US with pain killer addiction running peoples lives.
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Bhud
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PostPosted: 17:50 - 09 Jun 2021    Post subject: Reply with quote

Can't suggest anything for nerve damage. But if you've got inflammation-related pain, try this stuff:

https://www.sainsburys.co.uk/gol-ui/product/sainsburys-fresh-turmeric-100g

Note it's the fresh one. Nothing dried, powdered or in pill or supplement form, because it won't work.

Cook a reasonable amount (say, half a piece) and eat it every day for 4 days (don't miss a day), then post back here. This is what worked for me.
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P.
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PostPosted: 19:06 - 09 Jun 2021    Post subject: Reply with quote

tatters wrote:
Have been avoiding the pain killers since getting out of hospital as its a route l do not want to go down, big issues here and down in the US with pain killer addiction running peoples lives.


I feel you there, spent too long dealing with my pain with tramadol, it went onto oxycodone bought through...places... and it really fucked my life for a while. I'd avoid if possible.
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mentalboy
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PostPosted: 02:15 - 10 Jun 2021    Post subject: Reply with quote

Bhud wrote:
Can't suggest anything for nerve damage. But if you've got inflammation-related pain, try this stuff:

https://www.sainsburys.co.uk/gol-ui/product/sainsburys-fresh-turmeric-100g

Note it's the fresh one. Nothing dried, powdered or in pill or supplement form, because it won't work.

Cook a reasonable amount (say, half a piece) and eat it every day for 4 days (don't miss a day), then post back here. This is what worked for me.


That's interesting, I'm not a great believer in supplements but do take fish oil for it's Omega 3 and pill form turmeric to combat the decade old fungal nail issue on a big toe - I've been taking that for 6 months with the sum total of fuck all difference to the toe. I didn't realise the turmeric was good as an anti-inflammatory but more importantly why do you say only fresh works? I was under the impression that added piperine in the supplement assists with absorbtion, which is the usual issue with turmeric intake and what you might be referring to?
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Bhud
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PostPosted: 08:47 - 10 Jun 2021    Post subject: Reply with quote

mentalboy wrote:


That's interesting, I'm not a great believer in supplements but do take fish oil for it's Omega 3 and pill form turmeric to combat the decade old fungal nail issue on a big toe - I've been taking that for 6 months with the sum total of fuck all difference to the toe. I didn't realise the turmeric was good as an anti-inflammatory but more importantly why do you say only fresh works? I was under the impression that added piperine in the supplement assists with absorbtion, which is the usual issue with turmeric intake and what you might be referring to?


The drying seems to change it, and, whenever I've tried it, it didn't do anything. I've used it topically as well, and it seemed inert and lost even its antimicrobial properties. In strange circumstances that almost made me superstitious, several years ago I cut my hand. Some casual reading informed me that turmeric could speed the healing process. It didn't, and despite several applications, my cut became infected. When I had a twinge in my back, I tried lots of the same stuff, this time in food. It didn't do anything either. At this point my experiences with the stuff contradicted what I'd been led to believe, so I did a bit more digging, and came across references to a text called Charaka Samhita. That's supposed to be a sort of traditional medicine book, and it separates dry from wet turmeric, and mentions a few other healing nherbs. So I bought some of the fresh stuff, and found it was completely different in appearance, flavour and smell. Just the difference in colour suggested it goes through a chemical change when it's dried. The fresh stuff will have the full range of terpenes in any case. I found that this worked. Couldn't believe it, and soon forgot to keep adding it to my food, and the pain returned. Far more powerful than ibuprofen, I found. However, it took a longer time to begin to work. That's why I recommended to the guy to take it for 4 days straight. If he tries this, he'll have something to report if and only if it's inflammation-related pain. I'm fairly sure.

I'm not big on supplements except when they use manufacturing techniques to isolate something that's hard to find in food. I take one, plus a multivitamin, and that's it. When a supplement tries to isolate something found in nature and package it as a medicine, it's a Body Shop type of ripoff in my opinion. It risks taking out what made the underlying stuff work... Especially in the case of things containing volatile compounds, like turmeric. CBD is another example - it's hard to find full spectrum CBD oil, the chances you're being scammed by opportunists are many, and in all cases you would be better off with the unprocessed plant itself, than an extract or product or derivative.
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Irezumi
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PostPosted: 11:59 - 10 Jun 2021    Post subject: Reply with quote

Congrats on having a relatively good outcome with CES, sorry that it's happened to you though. Not sure how Canada works but I'd definitely pursue further legal routes if possible. For those who aren't sure, Cauda Equina Syndrome is compression of the nerves exiting the end of the spinal cord essentially, very serious.

Have a good look through this website and perhaps get hold of the book 'explain pain' https://www.noigroup.com, resources here (https://www.noigroup.com/resources/). Aimed at therapists quite a bit but a lot of useful stuff for those suffering with pain long term as well.

Quote:
Nerve damage is permanent with a chance of the remainder of the disc re-herniating again or other discs that may cause additional damage.

Look into neuroplasticity. I'm not saying it will necessarily ever change but there is scope for potentially small and incremental improvements. Consult a physio as to what you can and can't do physically, the general advice is do as much as is possible really, Tai Chi is a great idea as is Yoga. Again no idea how Canada works but you will likely be able to get referral to long term pain management clinics which will have a broad team of clinicians to offer support, guidance and classes etc.

Definitely avoid painkillers as much as possible, all evidence suggests that activity/exercise is at least as good as painkillers and in fact better in pain relief, having said that as an occasional adjunct they can be useful. Also be wary of legalised cannabis for pain. Like any other drugs it works for some, not all, and can come with side effects. As mentioned the psychological aspect plays a massive role and if you can get that addressed it would likely be beneficial.

Have a look into the Wim Hof method/books https://www.wimhofmethod.com. The Thalamus which his method has been shown through functional MRI to control is where endogenous (internal) pain relief originates from so there is some reasoning behind what he teaches.

Things can improve for you but may take time. This isn't an area I know a great deal about it but if you have any questions then let me know and I may be able to guide to resources. Hopefully things improve for you. Thumbs Up
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Fat Angry Scotsman
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PostPosted: 12:22 - 10 Jun 2021    Post subject: Reply with quote

Fat Angry Scotsman wrote:
MarJay wrote:
have a few friends and acquaintances with chronic pain and many of them swear by TENS therapy.


Off the back of this post, I just bought one off Amazon to try out. If it's shite it's only £40. Nothing ventured is nothing gained.


Just following up from this, I got a cheap £39.99 unit off Amazon and had my first shot of it last night and I have to be honest it felt amazing.
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chickenstrip
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PostPosted: 14:33 - 10 Jun 2021    Post subject: Reply with quote

Irezumi wrote:
Also be wary of legalised cannabis for pain. Like any other drugs it works for some, not all, and can come with side effects.


I think it depends on how bad things are for the individual, and how effective or not other treatments have been. There are many treatments that come with unwanted side effects, and of course the pain itself is eminently undesirable. To me, it has been about balancing these factors to achieve a life that is worth living. That might mean accepting some unwanted side effects for greater benefit elsewhere. In the end, only the individual can decide if these are worth it to them. Exercise could exacerbate the problems for some people.

If pain is really bad, it is likely to change one's entire lifestyle anyway. What you want is then to construct something that is acceptable to you.

I would say whatever you try, start in easy with it, whether it be exercise, pain killers or anything else. I don't think the aim is always to eliminate chronic and severe pain altogether, which may not even be possible, but to reduce it to a bearable level where you can function and still gain some enjoyment from life.
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MCN
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PostPosted: 18:48 - 10 Jun 2021    Post subject: Reply with quote

JackButler wrote:
Dr. BCF will see you now . . . . ?

In the bike world you will never be far away from someone living with debilitating injuries.

There are only 2x things, possibly 3, that work for my undiagnosed back pain issues.

When the pain is crippling I take a low dose of Prozac. Almost impossible to get on prescription these days 'cos the Docs no longer get trips to Las Vegas medical conventions for their trouble. I carry 2 10mg tabs in my wallet & the relief is almost instant. I was told to try it by a chap who suffered life changing injuries 40+yrs ago & it works for him & it certainly works for me. It is also highly addictive & you should only consider it if you can handle taking a one time dose to see if there's immediate relief, you really do not want to be hooked on it.

My other recourse is cannabis. The proper stuff. Almost everyone I know who suffers aches & pains is now on weed. If you have a problem with cannabis being a far more sensible option than anything big pharma can throw at you then bring it on, I know the subject extensively.

The 3rd way is physio. I spent £1000's to discover that most chiropractors really are nothing more than qualified & knowledgeable quacks. Eventually I was recommended to a very well respected sports physiotherapist who wrote me a course of regular exercises & stretches. This does not help me when I suffer an episode, but who knows how much more frequent & painful those episodes would be if I didn't . . . .

Good luck to anyone who may be suffering & I hope it takes a lot less time, effort & £money to find what works for you than it did for me.


Yep... When we think of 'unbearable pain' on here its reading one of your Narc posts where you give everything your 'Midas Touch'.

Rolling Eyes
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