Pain Killers Pain Management Opiates and Stim... - Pain Concern

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Pain Killers Pain Management Opiates and Stimulants

Pachamama1 profile image
79 Replies

I have used Co Codamol 30-500 for many years to control lower back pain.

I find the side effects of opiates "tiredness" so disabling and the long term use means they are becoming ineffective. There are numerous other negative effects caused by Opiates.

I have tried some of the Neuropathic I,e. Amitriptyline but they don,t agree with me.

Researching on line I have discovered that stimulants can be very effective in combination with Opiates and the advantages are numerous, yet My Dr is reluctant to go down that rout I believe this is due to the very bad press stimulants received during the 60.

Has anyone got any knowledge or or experience of this multi medication approach to pain relief.

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PainConcernProjects profile image
PainConcernProjectsPartnerCommunity ChampionPain Concern

Hi, I'm not sure it will fully answer your specific question but I'm going to link a document from the Faculty of Pain Medicine - its quite a detailed document and there may be something in there that addresses your question, or at least gives you some information for another discussion with your GP - when we can have these again. Hope it's useful.

fpm.ac.uk/opioids-aware

Pachamama1 profile image
Pachamama1 in reply toPainConcernProjects

Hi thank

you I have long long term term chronic pain with many of the long term affect bought about by spinal verve damage and opiates don,t ease the pain anymore they also have many negative side issues.

My brain seems to get more sever pain signals than my body feels. The result being i Have this screaming brain that seems to demand I lay down.

When I lay down my body feels much greater relief than any pain it seemed to be feeling while I was standing.

I can put a pound coin in my front pocket and be in agony quite quickly with numb legs and all that kind of thing.

The reality of putting a mobile phone in my pocket is complete no go for many years.

I have read that stimulants can reduce the use of opiates while enhancing their analgesic affect as well as that stimulants are an analgesic in their own right so was looking for some feed back in-order to approach the Doctor again

So you may well have understood what i was looking for as you have provide a link to that end.

Thank You for Reply I will check it out now

Just as bit of information for yourself below is an address that if you goggle I would appreciate your though on, Sorry not sure how to do a link

"Status Report on Role of Stimulants in Chronic Pain Management"

cyberbarn profile image
cyberbarn in reply toPachamama1

I can understand why you would want to try this, but this sort of thing is something that only pain clinics should be discussing with you. GPs are unlikely to be able to prescribe this sort of treatment. Have you been referred to a specialist pain clinic yet?

We need to be sceptical and critical when reading reports like the one you have mentioned. For instance the report says 'recent studies provide a compelling scientific basis..." but when you look at the paper they cite it is about mice, not humans. There is also a rule of thumb that puts less emphasis on paper published longer ago than 10 years, because science moves on and builds on what has come before. If a paper or report's references are mostly older than that, you have to question their arguments. Also that report was published in 2015 and there will be plenty of research that has happened since then.

Another caution is for very small studies. For instance the reference 9 in the article above is to a paper that studied 20 male subjects who were having prostate surgery. One of the conclusions they came to was, "Clearly, no consistent picture is emerging from the currently available literature regarding the relationship between CP (known to be associated with CPM deficits) and CSF neurotransmitter levels"

One sentence in that article is chilling, "At this time, there are no reports documenting abuse, diversion, or addiction with stimulants in patients with legitimate chronic pain. " That was exactly what doctors were told about opioids and that didn't turn out to be true. There is a lot of evidence of misuse of stimulants which is why they are usually controlled drugs only prescribed by consultants.

So I can understand why your doctor is reluctant to go down the stimulant pathway. It might not be because they got a bad press in the 60s, but because the evidence that they work is not strong enough to justify their use, and the prescribing mechanisms in primary care may not allow it.

Have you explored the Pain Toolkit website? There may be some ideas there you could try too.

paintoolkit.org

Just as an aside, I have a friend with chronic pain and ADHD who is prescribed stimulants by her consultant. it doesn't make her pain any better.

Pachamama1 profile image
Pachamama1 in reply tocyberbarn

Hi cyberbarn

Thank you so very much for well informed and concise information.

You are far more knowledgeable about the whole thing than I am. its just that for some time now I have been struggling with my pain issues they seem to stop me achieving anything it also feels very hard to be believed. Yet there is good physical evidence as to why I suffer almost constant pain at varying levels.

I feel I sported the lack of abuse thing and less lightly to struggle as some years ago now I had a bit of a reputation for drinking alcohol daily perhaps a day or 2 max without alcohol in a month if any, yet I simply stopped I did not identify with any particular withdrawal problems at all, the only down side being the loss of the pain killing effect alcohol certainly dose bestow, I have no desire to take to alcohol again.

Have taken 30\500 Co Codamol using as few as possible on a daily basis for some 10 years they really do not seem to subdue the pain anymore but they do just make my eyelids so very heavy with a groggy body. I have experimented with not using them and do not really identify with withdrawal issues.

When I was working I did used to get unreasonable and irritable if I missed taking them however that was the pain control they used to offer. Now not working I think I take them more for the sleep they provide than the pain relief however I cant just go on doing nothing due to pain. I cant even run a sink full of hot hater to do dishes without hurting badly taking a break then buy the time I have washed a few dishes hurting badly again its so frustrating.

I think I may have been offered pain clinic around the time I tried Amitriptyline.

That was around the time I went on to the higher dosage of Co\Codamol.

Thank you for your time in this and solid information.

I will take a look at " pain tool kit"Something has to be addressed some how

Has your friend got pain issues as well ADHD.,

I wonder what strength and type of stimulant.

Thanks again for all your Input x

PainConcernProjects profile image
PainConcernProjectsPartnerCommunity ChampionPain Concern in reply toPachamama1

I do think it's a case of asking your GP to make a referral to the pain clinic, as suggested above. The studies in that summary article are quite dated. You need up to date advice from a pain nurse, or similarly qualified prescriber, who can make an assessment of your needs. Referrals may be on hold right now but it is worth having the conversation in future. Have a look at the Pain Concern website too, as there may be some information on there to help.

I'm going to link you to a couple of resources about getting the most out of healthcare appointments

painconcern.org.uk/managing...

painconcern.org.uk/gp-consu...

Pachamama1 profile image
Pachamama1 in reply toPainConcernProjects

Thank You

I have managed my injuries and the pain they provide myself for many years only ever seeing the Doctors when things seemed to be developing.

I have never really been good at asking for help, always been very independent, that way.

One present day problem is that none of the Dr or the Consultants at the Hospital I have seen over the years are about any more so its been very frustrating.

I did approach the Dr at the end of last year. He had no real knowledge of my Injuries. He seemed quite unbelieving at the time, I have however provided some information I acquired from hospital archives since then,

I was referred by Dr for an MSK appointment August of last year after getting no result, I contacted MSK team myself End of November and provided them with Information from archives they. Made an appointment to come in and see them in all done in less than a week Saw a Chartered Physiotherapist.Beginning of December.

Dr do now seem to be taking me seriously. They have been most helpful with prescriptions ever since

Have been trying to get myself to contact Dr lately I just not very good at asking for help and when one thinks of present burden on NHS it makes it harder for me to add to that burden

I have serious trust issues as well these days it feel.

Thank you for advise need to give my brain a rest for a bit now will check other stuff out in a bit

Thanks x

Pachamama1 profile image
Pachamama1 in reply toPainConcernProjects

Wanted to say thanks again for all the information and directional advice cyberbarn has been quite refreshing give him a pat on the back for me. Thanks.

I really need to get back to Dr and will Give MSK team a shout as well

It dose feel good to be believed

Thank you x

Pachamama1 profile image
Pachamama1 in reply toPainConcernProjects

Hi just wanted to say I beat my self up for couple of hours, till phoning the GP won went to Phone Its good Friday talk about out off touch, must more attention. ヽ(≧□≦)ノ

Entela15 profile image
Entela15 in reply toPainConcernProjects

Regarding pain clinicians they will do the same as your GP is. Feed you different drugs until you find a combination that works for you. Sadly all painkillers stop working after a while. I've been under their care for years and I've tried several painkillers. Many a times I felt like a guinea pig. Opiates don't work for me , cocodamol stopped working, NSAIDs work much better but you have to be cautious with them. Other drugs you could try are gabapentin and pregabalin. Also Cymbalta which seems a favourite of all pain doctors. In the end I gave up chasing after them and started exercising. That's by the best painkiller so far.

Pachamama1 profile image
Pachamama1 in reply toEntela15

Hello Entela15

I struggle with anti-inflammatory drugs have had stomach bleeds in the past and they seem to hit my breathing since last injury.

I go with exercise have lived my life by it bit hard to do these days keeping weight down helps allot as well.

No nothing of most the drugs you mention,

Happy Easter to you x

cyberbarn profile image
cyberbarn in reply toPachamama1

Opioids were never meant to be used for chronic pain. They were developed for end of life pain, where there is a limited time of use, and as you say, if it makes people tired then it didn't much matter. But the drug companies wanted to sell more, and told doctors that they weren't addictive for people who had genuine pain. There was no evidence of that, but the doctors believed them, especially as it is so much easier to just give out pills than to actually address the pain.

And there is a saying that if opioids aren't working, giving a higher dose isn't going to work either!

One of my favourite pain researchers is Irene Tracey. Are you up to listening to podcasts? You might find her interesting:

bbc.co.uk/programmes/m0003qx1

And there are some more podcasts here too: podcasts.ox.ac.uk/people/ir...

As for my friend, yes, she has pain issues too. She had a condition called hypermobile Ehlers-Danlos syndrome, and as like me she is older she has osteoarthritis too.

in fact many people with chronic pain find that they have symptomatic hypermobility, also known as hypermobility spectrum disorder.

Pachamama1 profile image
Pachamama1 in reply tocyberbarn

Thanks need a rest I will get back to you x

Pachamama1 profile image
Pachamama1 in reply tocyberbarn

Hi Thanks for all the input still got to study it as yet.

I have osteoarthritis spine elbows hands I think I am riddled with it really.

I tend to not think about due to the muscularskelitol issues I have going on

have a failing thoracic spine that has the affects of the rib cage restricting breathing

My daughter says that Opioids make that worse as well because they affect the musculus working. am just fed up of hurting all the time

Thanks for your information in this I really got to phone the Dr I have put it of again today Stay safe x

Pachamama1 profile image
Pachamama1 in reply toPachamama1

Hi I ment to add I hope you and your fried are both well I have no idea what "symptomatic hypermobility, also known as hypermobility spectrum disorder." Is it dose not sound very nice.

have looked at one of your links will listen to that later. It sounds like it going to be about my issues

Thanks again x

cyberbarn profile image
cyberbarn in reply toPachamama1

hEDS and HSD aren't that bad. Some people barely notice it, but others have things that are more noticeable, like irritable bowl syndrome or chronic pain. I had no problem with it until my 40s when I started to get arthritis in my feet and hands, but my son has it worse than me and has fatigue with it. Have a look at the EDS UK website. ehlers-danlos.org

Pachamama1 profile image
Pachamama1 in reply tocyberbarn

Hi that was really useful thank I had no idea what it was and very enlightening the basic explanation on the web site, though It did rule this out for me as got no genitic link to my pain issues my muscularskelitol chronic pain issues, are due to very rare spinal compression fracture dislocation injuries and surviving with almost no neurasthenic deficit the time. So rare iI believe may even be in medical books now.

One of the reasons Dr on first hearing about it are very sceptical. Just such a very rare injury.

I would have done better to have seen Dr far more regularly over the years.

However as is the way of such an injury, things have developed considerably and in ways I really did not envisage.

Thanks for all your input I really need to get back to Dr and MSK team I would like to see if I can get my brain scanned for pain pathways. I have said for year signals the brain gets don,t seem to equate to signals the body receives.

It is most strange at time

Thanks for all the education iit been refreshing x

Pachamama1 profile image
Pachamama1 in reply tocyberbarn

Hi

Thankyou for that cyberbarn. Professor Irene Tracey so interesting not repetitive and what an education I just received.

I would like to be one of her test subject I believe I have very altered brain pain chemistry. I wonder what pain management at local hospital is available. I may approach the MSK team directly again with pain control as important factor.

I am not mad its all very real. been in pain at various levels and various types for in excess of 40 years no wonder I feel like I do.

MSK Physio did say to contact him directly. Try to open up about personal issues.

I have self medicated for many years, not sure if one is even aloud to talk about it on this site. Yet only ever had that conversation with previous Dr That knew me.

Not sure I could open up to Dr that did not seem to believe i had any spinal issues.

However in quest for understanding of self, i gave up self medication at the start of this year, Only real issues being hurting so much all the time.

I,m not, Mad its all very real just as i have been thinking it was or very close, Dr that knew and believed me are not available anymore so frustrating.

That pod cast has given me the knowledge to approach New Dr now make some expectations, with extended belief in self and in what i am telling them.

Thank you enlightenment and empowerment

Going to listen to other podcast now Thanks x

cyberbarn profile image
cyberbarn in reply toPachamama1

I am really glad that this is helping you. The more we understand our own conditions, the better we are at explaining how things are to our doctors. I really hope you can get a referral to a pain clinic now. Good luck and let us know how it goes.

Pachamama1 profile image
Pachamama1 in reply tocyberbarn

Hi thanks I,m not mad, am I. o((>ω< ))o

Pachamama1 profile image
Pachamama1 in reply tocyberbarn

Hi just wanted to say I beat my self up for couple of hours, till phoning the GP won went to Phone Its good Friday talk about out off touch, must more attention. ヽ(≧□≦)ノ

Konagirl60 profile image
Konagirl60 in reply toPachamama1

Your ‘Sympathetic Nervous System’ has been highly agitated for way too long.

You might get help from taking .1 mg clonodine at bedtime. I find it really helps with sleep and pain.

Which opiate do you use? I found Hydromorphone to be amazing BUT the constipation as a side effect made using it regularly impossible! I have a rectal neuropathy so it’s not good for me.

Would capsicum roll on pain relief gel or cream help your pain? I feel for you.

Pachamama1 profile image
Pachamama1 in reply toKonagirl60

Hello Konagirl60

Thank you for you feelings x

I only use the 30:500 Co Codamol opiate and got some pills for Arthritis as well

As I said biggest problems of late is being believed. I have the injury I describe to then, It is very rare.

It also happened while I was living abroad so NHS have no records of it original injury I had to get records out Hospital archives to prove to Local Hospital Occupational Health nurse and as fate would have it I turned up the scan that was taken due to a different injury and it covered my back as well just luck or they still would not be believing me

Local hospital were actually worried about my mental state as they thought I was making it up. So did my Dr how mad is that then

Peace, good health and keep on dancing xx

Konagirl60 profile image
Konagirl60 in reply toPachamama1

I had a two nerves pinched in my ischial spine and ten doctors wouldn’t help me. I was labeled having a nerve imbalance. The doctors gaslighted me to; it’s all in her head. NOT! I know how you feel. It’s abuse to women.

I’m lucky to be alive.

Pachamama1 profile image
Pachamama1 in reply toKonagirl60

Hi so gaslighted means they don,t believe you dose it.

I think the Occ Health nurse was actually worried about me just for the wrong reasons. She did me a very nice letter about the Arthritis in my hands,

It is defiantly abuse, to not be believed It has damaged me The mental reliving of the accident that broke my back, though I am a guy its just a female friend set this up for me, she always said I was a sensitive soul. think she was having a laugh, I did not realise what the Goddess was till afterwards it made me smile.

So have not changed it.

So the ischial spine just had to google that I am fairly up on spine terminology but that was a new one on me. I guess you must of had some major leg issues going on at a guess have they got it fixed at all x

Konagirl60 profile image
Konagirl60 in reply toPachamama1

No leg issues except for muscle atrophy and pain from standing all day for over 15 months.

I couldn’t sit or lie down without feeling electrocuted. I didn’t sleep for 3.5 years.

I was incorrectly diagnosed and the medications I was given were ineffective. I got no relief whatsoever from them but I became even more agitated, irritable, brain fogged and out if it.

I used my life savings to get to the doctors who could help me, to buy 1. capsicum pain patches for ten years, 2. pain balms for years, 3. supplements to offset the bad side effects, 4. Naturopathy to detox my liver, kidneys, lymphatic system, 5. Orthopedic shoes because my legs, knees gave out from standing all the time, 6. Special perineum sparing cushions ( that never helped ) 7, hotel fees in Minnesota ( 3 times ) 8. Meals in Minnesota, 9. Stem cell therapy 10. Ice packs and a cooler as I sat on ice in my car for two years 10. massage therapy, 11 chiropractor therapy, 12. Reflexology..... you name it. I tried it.

No. I have chronic neuropathy and I’m on long term disability. My decompression surgery was done way too late. The doctors I saw went above and beyond to deny me proper care. It’s complicated but they committed fraud. They covered up a post surgical complication that caused this to happen.

Pachamama1 profile image
Pachamama1 in reply toKonagirl60

Blimey what tragedy.

I feel for you I been trying to give Dr the benefit of the doubt as I been wrongly diagnosed in many ways One is of which I have what they call the rare bone An L6 and have known that since my accident,

I fell of a cliff face when I was 15 had the best care possible at the time without a doubt, as was living abroad Dad in the forces so was in a forces hospital immaculate care, they organised their top Orthopaedic consultant to come and see me he then did a tour of the far east and called back to see me when I had this especially made corset fitted, He fully advised me of what I needed to do for future life and I lived by his words.

Well the last time I saw consultant at local hospital he insisted I had no L6 I saw A physiotherapist at the same time who informed my Gp that it was not much of an injury, I did not know what to say to him, I put my Gp straight.

That picture really is my back honestly and i feel I have to say that because of recent unbelieving events.

Prior to last consultant. I had the L6 confirmed by other consultant that had seen twice at the same hospital all as l was originally told and every consultant "all now retired" except the last. has asked for copies of Xrays for their own files.

All my files seemed to have gone missing or archived at different Hospital.

After reading your experiences I am wondering just how much of a cover up may be going on as I saw MSK physio " who I felt really knew his stuff" just before Christmas except for the good advice he gave me at the time he has not written the letter to myself or my Gp regarding my condition.

I think I need to get bit tougher about it, I been struggling so much lately,

you have inspire me a bit more.

Writing this post has turned out to be a very good idea.

Your reality is really quite tragic one always expect these professionals to do the right thing even regarding mistakes, perhaps my expectations are to high.

My heart felt thoughts and feelings to you. XXX Male Mama x

Konagirl60 profile image
Konagirl60 in reply toPachamama1

It’s been a nightmare. I do NOT trust doctors anymore. They’ve lost their empathy. Don’t give up. Thank you for your support and understanding words.

Pachamama1 profile image
Pachamama1 in reply toKonagirl60

You are most welcome if i think about it I don,t really trust them either its not like when you knew one for years and they knew who you were as well ,x

Konagirl60 profile image
Konagirl60 in reply toPachamama1

My doctor knew me for 17 years. She turned on me!

Pachamama1 profile image
Pachamama1 in reply toKonagirl60

That is very sad it just shows you are a real eye opener for me.

For a number of reasons I wont go into at moment.

Thank you x

Enzo777 profile image
Enzo777

Hi, I have suffered from chronic nerve pain and two types of spinal pain with both being disk/bone related. I see a neurologist who is also board certified in pain management. I have been on oxycodone and oxycontin for six years. I tried PT, yoga, acupuncture and cryogenic chambers. Nothing helped except the yoga which does help a little. It took 5 months to find pain medicine that actually worked. I have been on the exact dose for over five years and have never needed my pain meds raised to a higher dose or higher quantity. I was also prescribed Adderall 20 mg twice a day. That was too much so my Dr changed it to 20 mg once a day. The Adderall helped my pain and focus tremendously. I have been on that same dose for over five years. I can now actually live again. I can get out of the house and even walk (slowly) one mile almost every day. Before I was on these meds I could not leave my home because I hurt so badly. I believe that drugs do different things to different people. I had some genetic tests which let's you know if you are a slow, regular or rapid metabolizer of almost every drug made. That is how my Dr chose which meds would be best for my body. So I wish you luck and hope you find some relief. For my body the Adderall helped my pain or it helped my pain meds work better.

Pachamama1 profile image
Pachamama1 in reply toEnzo777

Hello Enzo777

That all sounds well positive thanks I have always kept my CoCodamol use to as few as poss

but almost waste of time these days except for sleep.

I do not seem to respond well to brain pain altering pills and am quite scared of them.

It dose seem that there are many pain management approaches I have not even heard of.

My pain these days dose seem mostly muscular but then I have been doing almost nothing.

Have to be so very careful what clothing i wear as anything around my waste can cause lots of pain lower back.

With the upper back problems mean doing anything above shoulder height hurts so much so quick and real breathing problems.

As have hurt for so many years its a bit like pain is the norm so have prob not given proper attention.

As said gave up alcohol then realised how much of a pain killer I was probably using that for Think I may have replaced that with other things for a good few years but decided to give everything up start of the year see what would happen and just don,t do anything hardiy achieve a thing these days just don,t want to stand up.

A walk to the shop and back quarter mile there and back, it takes hours of mental wrestling to talk myself into, and it hurt,s,

Hope this don,t sound like i am moaning, not good at talking about it

Thanks for bit more inspiration, I got to phone GP today and Email MSK team.

Thanks again x

misstopaz profile image
misstopaz in reply toEnzo777

Hi what is Adderall as I have never heard of it in Scotland

Pearce1940oscar profile image
Pearce1940oscar

Sorry if I sound thick but what do you mean by stimulants I don’t understand

Pachamama1 profile image
Pachamama1 in reply toPearce1940oscar

stimulants Ritalin is one energy boosters pick me ups they were called in 60s

Enzo777 profile image
Enzo777

I understand exactly what you mean by pain being the norm. It is truly heartbreaking for me to realize that some people can not find anything, be it pharmacutacal, spiritual, acupuncture etc to atleast relieve some pain so that people can have some quality of life. I was always told by my Drs that nothing can or will take away all my pain but they promised me they would find something that could ease my suffering and make it possible for me to get up and out of bed and be able to live a less painful life. God bless my physician who will not allow any patient to suffer. Even if he can just reduce it 10 or 20 percent, that is still some relief. He will not be bullied by the CDC, DEA or anyone else. It's so sad that he is a dying breed. I hope you can find some relief, just please never give up. I will keep you in my prayers.

Pachamama1 profile image
Pachamama1 in reply toEnzo777

Hi Enzo777

Thank you for kind though and do wish the same for you x

I just had to Google CDC and DEA. You have a brave good Physician,

After overcoming the internal conflict pf phoning Dr yesterday only to realise it was was good Friday I decided to do something.

So put some effort into sorting the new room i have been trying to make my bedroom for some years now well that just turned into such a physically painful experience that ended up emotionally distressing, Sort of wish I had not bothered,

I believe In California if they have given it their best go and not managed to sort pain out for you they can prescribe almost anything you ask for providing they monitor your usage and you do a disclaimer.

As Said previously I have self medicated for many years and I know what worked that way.

Talking to my daughter at Christmases she asked me to prove I could give it all up if for no other reason than to prove my reality, so i did and my reality is far more painful than I expected . I just hurt so much everywhere.

This Covid 19 has just got so badly in the way though and none of the Dr I had opened up to previously are available anymore, I don,t open up easily ever.

I am determined not to go back to my old style self medication until I have seen what the professionals have to offer.

I find it so hard dealing with the reality of not being believed the anger that accompanies being looked at like your lying is so upsetting.

I am gong to start growling at them or something until they capitulate to good reason.

I even got ignored by health in mind recently if you say you don,t have suicidal thoughts and I do not neither can I lie about it, they don,t seem to care whats going on with you, they just ask the wrong questions far as i am concerned.

At health assessment last July performed by a Dr though not a NHS Dr I words were compactly disregarded to the point that among other thing He declared my spinal curver are Normal

Well the picture on my emoji is my lumber spine and the my thoracic spine has major major issues of its own .

I swear before all I hold holey that is my spine .

Thanks for your kind message. all my best of health thoughts to you(︶^︶) xxx

Pachamama1 profile image
Pachamama1 in reply toEnzo777

Hi I just wanted to add a positive. The disappointments of yesterday efforts came good today as what I started yesterday I got finished today. which means I have a bed to sleep on for the first time in 4 years though I do have a very very comfortable couch tonight is going to be very strange 'cool ( ̄﹏ ̄;) ZZZZZZZZZZZZ

Enzo777 profile image
Enzo777 in reply toPachamama1

You are already on your way to finding the peace that you certainly deserve.

Never heard of this. What if you tried chugging a red bull energy drink while having your opioid? It has the caffeine & taurine (amino acid ) opening up those rushes that or it’ll burn out the opioids affect sooner. I wonder. You could always buy taurine at health food store and chug a heavy cup of java lol.

Pachamama1 profile image
Pachamama1 in reply to

I do copious amounts of coffee, But have cut all my self medicated potions.

Check the site I put on at top for my take though need to beat Gp with the big stick or I will return to my old way.

I need him to sort something out I need some life, as self medication is not really the correct approach. I do not advocate it, just desperate measures in the past for me, it is nice to be able to say so.

Stay safe Be safe x

Georgiab123 profile image
Georgiab123

I took it years ago for arthritis pain until doctors stopped it I’m now on codeine I’m sure it’s a better mix then some of the tablets we take now

Pachamama1 profile image
Pachamama1 in reply toGeorgiab123

Hi Georgiab123

What did you take am a little confused as codeine is an opiate its the 30 in

30:500 Cocodamol that I take now but they don,t seem to work any more in reality they are good for getting some sleep on

Georgiab123 profile image
Georgiab123 in reply toPachamama1

I’m on gabapentin for nerve pain as well it all helps but iv got a high pain threshold which is the best pain relief

morphalot profile image
morphalot

Most doctors are taking people of medication for chronic back pain. Have you thought about a spinal stimulator?

Pachamama1 profile image
Pachamama1 in reply tomorphalot

Hi have never heard one what ever it is ta x

morphalot profile image
morphalot in reply toPachamama1

It consists of a number of wires and a battery that are inserted into your back. They lie alongside the nerves that are causing you the pain. They send out electrical impulses to interfere with the nerve signals to the brain. What country do you live in?

Pachamama1 profile image
Pachamama1 in reply tomorphalot

Hi I Live in England and thank,s that,s what it is then.

One of my issues is i think my brain gets signals so it hurts yet the return signals have been switched of to my body. I have had this Chronic pain going on for over 40 years.

It actually dose cause physical alterations in levels of grey matter apparently, with a reduction of brain cells in the pain receptor area of the brain.

morphalot profile image
morphalot in reply toPachamama1

If you can, when covid-19 is over, ask to be referred to a pain management clinic that do spinal simulators (sometimes called neural modulators). I don't know where in England you live but I had mine done in London. You can also get it at Oxford, Liverpool, Newcastle and others. It's worth a discussion. In the meantime look it up online and you can watch the very simple insertion being done.

Pachamama1 profile image
Pachamama1 in reply tomorphalot

Hi thanks I will check it out I live on the south coast.

I have seen several consultants over the years and they have all had one opinion in common Surgery is out of the question.

Though not sure weather the implant would come under the same thing.

I have to admit that I shudder at the thought of any cutting near my spine

I did have a cyst removed some years ago, it was right in centre over my spline between my shoulder blades afterwards I had some very difficult mental pictures of skin splitting all the way down my back.

Have other operations crucial ligament reconstruction had no concerns at all its just the down centre of my back that dose me in.

I will check it out though and the big thing i have got from this post is I need to get my Gp to refer me to pain clinic.

Thanks for all the support

Stay safe Be safe

Pachamama1 profile image
Pachamama1 in reply tomorphalot

Hi that was an eye opener" little cut and paste below" as long term chronic pain dose lower dopiemine production.

Neuromodulation is the physiological process by which a given neuron uses one or more chemicals to regulate diverse populations of neurons. ... Major neuromodulators in the central nervous system include: dopamine, serotonin, acetylcholine, histamine, norepinephrine and several neuropeptides.

Well interesting I had no idea such thing existed

Thanks again

morphalot profile image
morphalot in reply toPachamama1

Hi - the surgery to insert everything is tiny - it's not even a general anaesthetic, just sedation. They make a little incision with local anaesthetic then push the wires up NEXT TO your spinal column till they get them next to the offending nerve. They then insert the battery in a fleshy part of your skin. And that's it!

morphalot profile image
morphalot in reply toPachamama1

Neuromodulator actually means 'change to the nerve'. And remember that with the insertion of the device there is no medication involved

Pachamama1 profile image
Pachamama1 in reply tomorphalot

Hi I will be checking it out its just that the nerves in my back run a strange path but from what I have read they have ways of putting signals down nerves these days

still gives me the shivers the thought of any cuts down back, but that would not stop me from having it fitted

.

Thanks for info x

misstopaz profile image
misstopaz in reply toPachamama1

I'm in scotland and I know someone who is getting this done. I am waiting till she has had surgery. If its successful I'm going to try and get it.

I had an operation but unsuccessful so now I suffer from chronic bilsteral leg pain with neuropathic symptoms on a background of chronic back pain . I was left with radiculopathyin in my right leg with no further surgical intervention possible.

I'm in pain every day. Cant stand or walk for any length of time as my leg burns and back aches. I end up limping.

I have tried all meds . I'm on 120mg duluxotine . 400g tramadol daily , for nerve pain and many more tablets for other things

Pachamama1 profile image
Pachamama1 in reply tomisstopaz

Hello misstopaz

That sounds like allot of pain you are in. I am guessing you meant bilateral.

I don,t seem to get much nerve pain these days I can get numb legs with out it being painful except in my brain it feels like intense desire to lay down. I seem to giggle around without realising I am doing. I guess its just been so many years that hurting is a norm.

The muscular pain I get can be very intense though,

would be interested to know how it goes with your friend a before and after and how instant.

Take care of yourself up there in Bonny Scotland I believer there is a very very good spinal unit in Glasgow.

Stay Safe Be safe X

Fyllida profile image
Fyllida in reply tomisstopaz

Just to say, I had the neurostimulater inserted in January. The trial lasts two weeks, worn externally and it was successful, and was so happy to get the device inserted but since then it has done nothing at all. Top guy did it! Now back on painkillers ☹️.

However, going to have an MRI once hospitals reopen their units to see if anything else is going on. If all is well, the specialist may tweak the stimulator and find the correct level for me. Three months obviously too long for experimentation.

Only writing this not to be unkind, but to urge you please to not place all your hopes on this device. It can be fantastic for some but please keep an open mind. You may be one of the lucky ones. I do hope so.

misstopaz profile image
misstopaz in reply toFyllida

I've not to get a referral for this device

Fyllida profile image
Fyllida in reply tomisstopaz

Not sure about GP. My spinal surgeon recommended and referred me.

Pachamama1 profile image
Pachamama1 in reply toFyllida

Thank you for that Information it is always good to have personal experience advise

Stay safe Be safe X

Offcut profile image
Offcut

I do not have experience in stimulus? But I did take part in a course to get me off Opiates for pain! In principle it is a case that opiates after a while no longer remove pain and in fact can and do make you QOL poorer and the need for a higher level of opiate use. From what I have seen and learnt from all this is that you really want to get off these drugs! It is also important that you do it gradually. ( I took 5 weeks)

I used mindfulness and distraction techniques along with posture changes. As a result I now only take Paracetamol as and when instead of maxing out on Tramadol every day . My years of fogginess in the head have gone and I am thinking far more clearly and back to getting questions right on TV Quiz shows.

I am not pain free by any means but I manage it so much better and have not taken any opiates now for nearly 18 months!

Be well

morphalot profile image
morphalot in reply toOffcut

I stopped morphine 6 years ago when I had a stroke and the hospital doctors blamed the morphine. However I moved onto tramadol. I have now stopped both tramadol (unless I'm in a lot of pain) and Pregabelin. I have a spinal stimulator fitted but recently my pain management consultant felt the medication might be interfering with it which is why I've had to come off the medication. I use mindfulness and other techniques taught to me by pain management, like pacing, to reduce the pain. It hasn't gone my any means but I handle it as best I can.

Pachamama1 profile image
Pachamama1 in reply toOffcut

Hello Offcut

Thank you for such a heart felt openness in your reply I think I understand your " My years of fogginess in the head" statement as the justification we give ourselves for doing what we wish we were not. Very open expression I feel I identify with strongly.

I am not sure were Cocodamol come in Opiate world in comparison to Tramadol but 60mg of Codeine at a go dose seem quite allot I take 2 off 30;500 3 or 4 times a day.

I have read somewhere that one of the affects long term chronic pain has on the brain is the brain chemistry alters so dose not have serious addiction problems, I certainy seem to relat to that.

I know that one of the issues with coming of "Opium or Heroin" say is that it is so close to ones natural Opiate, that one stops producing the various chemicals that the Opium is supplying.

So coming of slowly is a must to allow ones body to start producing the various chemicals again, the problem with long term "Opium or Heroin" use is that some of the natural chemical producing do not start up again and have to be supplemented.

A very lay description I know that is.

I do not seem to have much in the way of issues when I stop using what ever it is my biggist lose feeling at present are enabling effect of stimulants with what also feels like many beneficial health effect.

Not wanting to be a fear inducer, but while Codeine is additive, Paracetamol is a Killers so PLEASE PLEASE do NOT take more than the prescribed.

Stay Safe Be Safe X

Offcut profile image
Offcut in reply toPachamama1

I never take more than 4 tablets in total of paracetamol a day. I tried to come off Tramadol in one day but did not get to the end of the day, It was horrendous! Funny thing was I was on Co Codamol Prescribed strength I got a rush run through my head after 30 mins of taking them but no improvement in pain?

I have done a lot of reading on the opiate crisis in the USA and also know what a nasty drug Paracetamol is to overdose on. (Not from personal experience) I cannot take Ibuprofen even in cream form without it affecting my breathing.

Be well

Pachamama1 profile image
Pachamama1 in reply toOffcut

Hi thanks for that it good that you understand paracetamol issues allot of people don,t

A friends brother died from it a very slow very painful and no way back extension of their life.

Be safe be sensible all my best to you

morphalot profile image
morphalot in reply toPachamama1

I used to be a nurse. Many people attempted suicide with paracetamol. They received intervention before they reached their aim, then realised they had absolutely wrecked their liver. They then does a long slow death. The dad thing was, many of them did not want to commit suicide. They were giving a cry for help and thought paracetamol would be a safe way of doing it.

Pachamama1 profile image
Pachamama1 in reply toOffcut

Would add well done for opiate extension the world of Morpheus is but a dream escape from reality

Take care of your soul and liver.

I am \was a Carpenter off cuts mean allot to me

morphalot profile image
morphalot

Just a warning about gabapentin. It crosses the blood brain barrier and gave me horrendous hallucinations. And I do mean horrendous. If you want more information about the spinal stimulator, just ask.

Pachamama1 profile image
Pachamama1 in reply tomorphalot

Hi thanks for that information I seem to respond strongly to any kind of mental stimulus so I would be very weary of Gabapentin then blimey well useful bit of knowledge.

Thanks am very glad you made me aware of that. ¯\_(ツ)_/¯

misstopaz profile image
misstopaz in reply tomorphalot

Hi

I am very interested in information. I am in the uk

morphalot profile image
morphalot in reply tomisstopaz

Hi misstopaz - I had mine done at st Thomas hospital in London. They've been doing it for the longest but I know that there are hospitals doing it all over the country - friends of mine have had it done in Newcastle, Oxford and Liverpool. You can get a list of them online. You can also find a video of the actual operation (which is tiny and done under sedation) online. At st Thomas You have to attend an assessment with a physio and psychologist first. Then you do a three week pain management course to give you insight into many ways to manage your pain, sleep, medication, work etc . Then you have a trial implant to see if it suits you. If so you have the permanent one fitted and follow up support provided by the hospital. Any questions, message me

misstopaz profile image
misstopaz in reply tomorphalot

Thanks for this

morphalot profile image
morphalot in reply tomisstopaz

You're welcome x

morphalot profile image
morphalot

You're welcome - of course it's different for different people but just thought you should be aware. Good luck with everything

Pachamama1 profile image
Pachamama1 in reply tomorphalot

Yo sound mate thanks you be good to yourself.

Entela15 profile image
Entela15

I've been told by a few people that taking cold showers can help with desensitizing your brain signals. 2 min at the end of the shower. But you have to keep it up. So I've started doing it. Will keep you posted if it helps.

Pachamama1 profile image
Pachamama1

Hello Entela15

I find that intriguing though have some reservations about testing myself. I guess you have to run water on your head, so perhaps just the head rather than complete body seems more enticing, I got shivers thinking about it.

I would love to hear how it goes with you, Bless you for your fortitude towards sell exploration X.

Peace and good health to you hope you have a warm place for after X

Alios67 profile image
Alios67

Me 2 I have same like that I tell my doctor hes say to me take pain killer nothing else can do no blood test no go hospital I don't know what to do I'm dien at home if is no blood test or no hospital

Stobban profile image
Stobban

Hi

Yea, a stimulant does nothing to raise your mood accept give you the ''jitters'', I know personally, it doesn't work with opiates. Codeine is a pill that gives you depression in large dose, except dihydrocodeine. I'm pretty sure you've been on codeine for much too long. I am 75 and take morphine in capsule form and liquid and if I took a stimulant I would be in Edinburgh zoo with the monkeys, believe me. If and when you do get a stronger opioid to control your pain your life will become much more comfortable. And that can only transpire with discussion between you and your doctor.

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