A Letter To People Without Chronic Pain

[withnail]

Welcome to UK420 Rainbows

It certainly seems to hit a note with chronic pain sufferers that letter, its certainly given me something to think about coming from he other side of the fence.

Hope you're at least having a good day today, are you growing btw ?

[Rainbows]

Hi Withnail, thanks for the welcome Yeah, not too bad a day today thanks no, not growing at the mo, more of a consumer Have to say though, what an excellent forum, very busy and loads of great info and help here by the looks of it!

Rainbows

[ripthedrift]

...............

A truly wonderful read, thanks for posting it ............

"If we could sniff or swallow something that would, for five or six hours each day, abolish our solitude as individuals, atone us with our fellows in a glowing exaltation of affection and make life in all its aspects seem not only worth living, but divinely beautiful and significant, and if this heavenly, world-transfiguring drug were of such a kind that we could wake up next morning with a clear head and an undamaged constitution - then, it seems to me, all our problems (and not merely the one small problem of discovering a novel pleasure) would be wholly solved and earth would become paradise."

ALDOUS HUXLEY

1894 - 1963

Edited April 20, 2010 by ripthedrift

[redeyes420]

most interesting thread ive read in a while

cheers to the OP

[Guest Blabblabberbab]

I showed this to my friend yesterday who suffers chronic pain from collapsed vertebrae - which he just found out yesterday are starting to fuse and grow together over the nerves causing him agony. It struck a chord with him and his brother, they are now sending it to their family to try and make them understand a little more.

Great post, thanks

[Eothenlady]

I have been in denial about the seriousness of my pain levels. I was cry-laughing bubbles out of my nose and over my keyboard while reading that. Laughing because of the precise similarities between the writing and my experience, crying with relief I didn't think I deserved to call it Chronic pain, seeing what some folk on these boards and in the hospital beds next to me have to put up with..... I'm starting to realise how wrong I was

When this was posted yesterday, I (looking back) purposefully didn't read it. My sub-concious avoidance of my disease kicking in I'm glad I read it this morning. It explains so much frustration and upset that has occurred from seemingly nowhere, from what others would see as benign, meaningless conversations, encounters and experiences.

Does anyone think it is wrong to print this into a nice card and send it to a few close friends and family that struggle to understand my situation? I'm not sure. Mrs C says yes.

Many thanks to the writer and to mintball. Understanding is such a comfort and a step forward

I think it's fantastic, the words mean so much, I'v suffered chronic pain for 35 of my 40yr's, Iv had 3 children & the pain is much worse than having a baby!!! plus that stop's..The pain, I feel everyday is endless & draining, my heart goes out to all you chronic pain suffererer's.. I think it's a gr8 idea, to send it out to ppl, i'm going to send it laminated to my surgery, maybe the receptionists, instead of acting SOOO full of there own self importance, maybe, someone may remember, we go there bcos we r sick.. not for attitude!!!

[cheezychong]

You've Got to put a copy under that Receptionist Nose, i also suffer like you do, i had a Colonoscopy last Thursday.

Its not my first, probably have to have more as things need watching now. I'd Love to say i dont need conventional

medicine and Canna is enough, sadly at the mo its not, although if i've got some good Indica to hand it helps sleep

better than Benzo's(Valium etc). If you'll let me offer you one piece of advice Eothenlady, Dont let the NHS push you about,if your not happy with their service or your treatment then tell them. I've even gone to the lengths of seeing Hospitals(Surgeons) outside of my County before, find out who's best at dealing with your specific problem(my GP helped me), you've got the Right to be seen by any NHS hospital-not just the local Health Authority you fall under.

I'm not saying its easy, i had to keep on pushing to get anywhere. I can relate to your problem so much Eothenlady,

i've been in exactly the same position myself-You have my deepest sympathy's.

I'm not going to finish by telling you to keep your "chin up"or anything daft like that, trust me i know how bad it can get,i actually think its worst to grin through pain-if it hurts,let it out,i'm sure you know how to manage your own pain.

I do hope you get some joy and get the treatment you so obviously deserve Eothenlady, stay on their case, i'm afraid

you've got to. Good luck Eothenlady, you deserve better

[Azzazal]

Hi -- this is my first post on the forum here.. I guess I should have gone to the intro page first really, but this letter in the OP is so powerful that I had to comment

I've been struggling with chronic pain too, like many of you, for about 30 years now - it's a frustrating beast and the frustration is made so much more unbearable sometimes when even people you know and love don't really have a handle on how it affects you, it is not their fault, they (thankfully) have never had to deal with it. The concentration thing... where was I? Oh yes, concentration.. this fades in and out on a monotonously regular basis, in fact, moments of clarity are a cause for celebration sometimes, as are days of lesser pain

Sorry to see so many others with chronic pain here, but look forward to 'meeting' you

Rainbows

OP hit it all on the head for me, Rainbows post to.

I'm one very tired man, trying to smile, chat or concentrate is very hard day to day. On good days, I'm super Dad and my family lights up like Christmas and on bad days I'm not sure what I am. I am for sure not "me".

Azza

Edited September 15, 2010 by Azzazal

[bogwoppit]

Been there got the T shirt psychological damage etc etc, my story is this, I have just been diagnosed with chronic pain syndrome after 30 years of trying to deal with it but getting very very little support from the medical establishment in fact the opposite a lot of the time, the final straw was an operation 3 years ago where I was diagnosed with advanced osteoarthritis in both knees,(I already have cervical spondulosis) the OP being done under private medical insurance, now don’t think the private medical establishment is pro-active or forward thinking where pain is concerned trust me when I tell you it’s not.

What I finally learnt only a few months ago from a Neurologist is this, The problem is with chronic pain it’s neuropathic so isn’t part of the body’s normal pain transmitting network so all the years of necking down stronger and stronger pain killers was really a waste of time as this kind of pain responds badly to normal analgesics, no shit!.

How it all started was with an RTA in 1981, I had severe whiplash and did unknown to me damage to the lower disc in my neck at the C7 vertebrae/disc.

This unknown to me at the time was the start of many years of constant pain that was basically untreated and undiagnosed. Until 2 years before a double knee OP

This original neck injury was I found out from the Neurologist the start of all my present problems.

It’s this first trauma that set the wheels in motion all those years ago, the Neurologist mapped it out for me like this, the common thread is a first trauma or injury that gives you persistent pain, this can stimulate the pain receptor region of the brain to such a point if left unchecked it causes growth in the neurons/receptors within this area so over a long period of time the trap is slowly set.

The killer is a second significant injury trauma or in my case an operation on both knees and the subsequent discovery of significant osteoarthritis, it’s this secondary extra pain and localised nerve damage/stimulation that leads or causes an overload of the pain region of the brain, technically it whites out

Now the important symptoms here are as follows, once the second injury/trauma has happened the unfortunate person will inevitable start to suffer from peripheral symptoms in the area of the new injury, in my case it was numbness and tingling in the lower legs and feet, this grew with the time until it was unbearable, and this is very importantly normal pain medication will do little good, in my case all I can do is rest until it settles down and I can become mobile again.

It’s now 3 years post op and I have had a serious problem dealing with it the surgeon missed it so did my GP and other HGP's I have seen during the years, and I have effectively lost my job although I am still working I am on a stage 2 warning from HR and looks like I am going to be sacked for being ill, and don’t think this can’t happen as it can under the incapability act it’s HR’s friend and best weapon, basically your treated like a broken machine and scrapped with no regard to your situation and circumstances.

The other thing I have had to deal with is how it’s altered my life and none of it for the better, and more distressing too me was the reaction from people I considered good friends and trusted work mates, I have been called all sorts of things and some refuse to even contact or talk to me these day’s, a lot of people are down right weird and very self centred. I have found.

Many see chronic long term pain as a slight irritant and do not have any empathy with those who are afflicted by it, in some ways it would have been better if I had a terminal illness, many treat you as a skiver and lead swinger, even when you tell them you have a serious and REAL problem.

All I can say is it’s robbed me of so much, and the real killer is weed helps but getting it is a big problem for someone who is in his late 40’s, growing it is one option but you can’t grow it in your garden as you will no doubt get reported and the local fed’s and now with Police helicopters with FLIR you run the risk of heat detection and a strong possibility will be more than happy to kick your front door in and give you a criminal record for trying to help yourself.

I am totally despondent with even medical Cannabis ever being allowed to be used here, we are such a backward society it beggars the mind, many other countries have been forward thinking and allowed it’s use but not here, the tabloid press and our political masters don’t want anything to do with it I am sure it’s a lot to do with protecting the big alcohol producers lucrative market, and the fact that taxing it will be hard as anyone can grow it, our streets are a vomit beer strewn war zone of a Saturday night but that’s, fine A&E is full of people drunk and or injured by other pissed idiots but that’s also acceptable as many of us like a drink so don’t see alcohol as the dangerous drug that it really is.

But conversely one person having a joint or even worse a paranoid episode and all hell breaks lose, the Daily Mail goes into melt down, they see it as dangerous social disease that needs eradicating before we all turn their darlings into crazed maniacs, refer madness is alive and well in the UK in the 21’st century and it’s pain management is hovering somewhere around the dark ages in my view. Sorry for the long rant but it’s been a long and painful road.

[Pot Luck]

and now with Police helicopters with FLIR you run the risk of heat detection and a strong possibility will be more than happy to kick your front door in and give you a criminal record for trying to help yourself.

Only with a silly amount of 1000w lights will you show up on FLIR if it's just for yourself, get a 250 or 400 watt lamp and you'll be safe as houses.. Just remember your Carbon Filter and to say nothing to anybody and you will stay safe.

I know how you feel, I too have Osteoarthritis. I don't have a single joint which isn't affected, it's a bastard to have. In that article a few posts up, Tanezumab sounds a promising medication, I'm going to ask my doctor about that one.

Good luck fella

onwards and upwards!

[Arnold Layne]

Bogwoppit

Welcome to UK420. You have my sympathies, like you I have been battling with Chronic Pain for decades. Thankfully, I find I can manage/control the pain reasonably well with strong Opioids. Even after ten years or more of daily Morphine use, it still helps and without it I would be in much worse state than I am. I have found it pays to switch painkillers around every so often. I was on pethidine for many years, then switched to Morphine (after a short time on Fentanyl), and last year I switched again, this time to Oxycodone (as Oxycontin). Its a minor help, but worth it for me. I also find Pregabalin (2 x 300mg daily) helps, it pretty much stops my RLS form manifesting, and that's a huge gain since RLS really does batter the spinal nerve system rather a lot.

I think you and I have one other problem to contend with. Yes, chronic pain describes the fact that or nerve system is out of control, and in a manic state. But underlying all that, we have intractable physical problems that exacerbate the issue.

For me (and maybe for you too??), distraction therapy coupled to strong analgesics has proven to be the most effective management programme. I have no stomach for yet further surgeries (I have had two major neurological operations on both the lower and upper spine, plus a dodgy total knee replacement). I recognise your description of your legs that tingling electric "numb" sort of feel, makes the legs feel like they are hollow, or sometimes full of water. Sometimes they feel like they are plugged in at the mains, all tingly and electric. Whilst not "Painful" per se, this is none the less a very disturbing symptom. Most days it makes my crotch area and upper legs feel like they are warm and wet, as if I had just pissed myself. Again, not painful but very disturbing and uncomfortable. Even more disturbing, I often get the feeling that I am actually pissing, my cock feels like its draining my bladder at full throttle.

Anyhoo, enough of that shit! Growing Cannabis. Now then, that's more like...

Get yourself a small set up. A war-drobe will do, and a 250 Bulb. Some pots and potting compost, a little sweat and a bit of pain, and Bob's yer lobster, you have a grow on the go! Forget FLIR, forget fearing the consequences. You won't get jail for a small percy grow, and even if you do (due to major previous convictions, for example), its no great problem doing a bit of bird).

I've been at it for decades now. never had so much as a tug on my collar. And I'm not as discrete as I should be, either. Anyway, I'll be damned if I'm going to let some bully-boy politicians put me off growing the one herb that truly does help to alleviate my symptoms. My conscience is clear, which is more than I suspect some politicians can say.

Good luck bogwoppit - get it growing and don't look back!

Screw the law, then screw it some more

[pigpen]

Perfectly written. I have been there, but luckily I'm not there at the moment.

This is worth emailing to people who don't 'get' why you can seem a misery for weeks/months/years.

thank you for the effort taken in putting that together

[I_L_M_G]

Nothing further to add your honour. A genius piece of writing, read with tears of association in my eyes.

Chronic pain sucks and should be illegal - not the most useful plant in my life!

[mactheman]

ive had chronic pain for ten years.only you know what your going thru.doctors just sigh and shake their heads.and give you ascrip for painkillers you either get addicted ,orfuck your guts up,friends think your amoody git just dont under stand.mac

Edited July 26, 2011 by mactheman

[bloomer71]

I was at my wits end yesterday morning after 2 nights with a total of 45 minutes sleep. Looking online for support, ideas etc and i quickly got fed up with idiotic findings such as "thinking your pain away" or, as one of my "friends" put it..."if you really wanted to be pain free you could, its really all in your mind. Then I found this site and thank god I did!! I have a degenerative spinal condition thats already required 4 ops and lots of spinal rehab - all was improving until I had an accident involving a fall and now my brain cant stop the pain signals it's processing. I'm usually pretty good at explaining things to people, but trying to explain chronic pain to a non sufferer can sometimes be like trying to describe a colour to a blind person - but that letter is spot on, so thank you for posting it. It just about stopped me from losing the plot completely to find other people who are in similar situations and who believe that the use of cannabis shud be a patients choice. Hell - I've been on a mix of opiates, anti-convulsants and others for over 10 years and the best relief I get is using prescribed meds ib conjunction with a smoke or 2.

Ttf there are others out there who get it!

(and this is my first post so hi to everyone)