Hidden in reply to emmy-loue

CBD does nothing for my pain n etc.I personally use only THC(flower) n medical marijuana,as it does not get u high per medically grown.Strains that work,vary person to person.A reputable licensed dispensary is best option.

I'm in US n things here r different from other parts of the world re:medical marijuana.

emmy-loue in reply to Hidden

Hi. Thanks for your quick reply! Will have to do some more research. I'm aware that in some States in the U.S Marijuana is prescribed for pain relief. We're not so fortunate in the UK. Although they are pretty lax about possession at least.

I used to be concerned about the stigma, but honestly, I hardly see anyone these days and I'm pretty much beyond caring anyway!

Am glad you've found something that works for you xx.

P. S. Good luck with the elf job this year. Let's hope it goes better than it did last time! 😁🧑🏼‍🎄

Reply (1)Report

Hidden in reply to emmy-loue

Feel free to reach out to me if u have any other questions.When I first went this route I had no help n noone to answer questions.I was a guinea pig.For me,my options ran out n prescription meds were killing me,literally.Never thought I'd be using medical marijuana, but..u have to help urself n make the best choices for ur own body .Btw..This year I plan on staying under the radar with Santa re:my elf antics,lol

Best to u

Reply (1)Report

Daz75 in reply to Daz75

Sorry Hi Tjwa....spell bloody checker..

emmy-loue in reply to Daz75

Hi Darren. I am truly sorry this has happened to you xx. Ever since the opioid crisis in the US, GP's and Pain Management have become really jittery about prescribing opioids in the UK. They are audited regularly and I have been told by several Doctors that their main priority is to themselves and keeping their licences - who cares that Chronic Pain patients are in a living nightmare and resorting to taking their own lives and devastating families? 🤬

I too had DDD, but had a Fusion in 2014, which failed. I was on 800mg Fentanyl, 600mg Oxycontin, and 120mg OraMorph daily. I also tried to come off (I got absolutely no support from my GP. Who even advised me to go Cold Turkey. What a totally irresponsible and stupid thing to advise! 🙄). I just couldnt cope with the pain.

I know exactly how hard it is butting heads trying to get adequate pain relief. It causes as much anxiety and frustration as the pain itself at times. I also had an MDT meeting and they stuck me on Buprenorphine patches 35mcg. I ended up in A&E multiple times and they eventually put my patches up to 70mcg. These were useless for when I had breakthrough pain, and I had to phone the Pain Clinic in tears every day for 2 weeks, begging them for Buprenorphine IR tablets. I was absolutely at the end of my tether. They gave me 3 a day. That covers just ONE episode of BT pain. Now I cannot do anything except lay in bed. My MH is at rock bottom and my poor Husband is at his wit's end watching me suffer and not knowing what to do.

It's heart breaking that you are having to go through this. Pain Management are so focused on getting people off opioids because long term they are not good for you. Yet they fail to consider that at this rate, there won't be a 'long term' for many of us, because we just cannot cope day in day out in such extreme pain. Their attitude is truly appalling - they wouldn't let a dog suffer like this, yet they expect the most sentinent creatures on the planet to. It really is appalling.

Given the choice between a shorter life on strong opioids, but with less pain and more function. Or a longer one on weak or no opioids and a crap load of pain and zero quality of life, it's an absolute no brainer for me. I'm only 42 and I sure as hell won't be around that much longer at this rate. The idea that I would carry on like this for another 10-20 years is absolutely laughable. It's also tragic, when you have children to consider 😔.

Sorry for my rant. It just makes me so bloody angry for all of us!!! 😡 😡 😡.

You say you have exhausted the PM system. Is there any way you can see a different team? Or change Doctors, which I am in the process of doing. There is no guarantee that they'll agree with you, but it may be worth a try. You could always try escalating it through the Patient Liaison Service or writing to your local MP even.

I'm guessing that no one has discussed surgery with you? I for one wish I had never had a Fusion, but just had my prolapsed discs shaved. There are other options, such as Spinal Cord Stimulators, or Nerve Ablation. If you haven't already, it may well be worth seeing an Orthopaedic Specialist (although I'm presuming that's how you found out about your DDD in the first place).

I know what you mean about going out into a street corner. I've tried cannabis, but it didn't do much for me, except make me high, which I really didn't like. It's the CBD content that makes the difference obviously and there are plants that are grown specifically for pain relief. But you'd have to know someone that really knew their stuff or grow your own.

I really wish I knew what else to suggest apart from all the normal stuff about mindfulness and meditation etc. That's all very well for mild pain, but when your pain is severe, it's about as useful as a chocolate fireguard.

Please keep in touch.

Emma.

xx

Daz75 in reply to emmy-loue

Hi emmy-loue

I'm sorry that have to suffer and I empathise with I really do. You make some very good points buy I literally have exhausted all options ie changing Drs (always being told I'm not in the catchment area).

I am waiting to hear back from a pain clinic different team. I pray that they will help and do what they are literally paid to do. I'm well aware that Drs are worried about litigation from all angles but not listening to a Pain Consultant and changing perscriptions put them right in the firing line

I thank you for your kindness and words. I wish you all the best.

Darren

Reply (2)Report

emmy-loue in reply to Daz75

I'm so sorry I can't be of more help. I know exactly how it feels when you've literally opened every door and come up blank. It really wears you out mentally x.

I had a look at your bio and it's rather similar to mine. I'm 42, so also relatively young, and I first injured my back picking up my Daughter as a baby before being diagnosed with DDD.

I've always been very active and Health and fitness and going to the gym were a big part of my life too. It was definitely an outlet for me when I got stressed or anxious. I find living such a sedentary lifestyle soul crushing TBH. Being an 'adrenaline seeker' is part of who I am. I can't change that. And I feel like throwing something at the people who tell me to "learn a language" or "try colouring books". It's just not who I am and it holds no interest for me whatsoever. I'd rather be outside jumping over ditches or whatever.

Your Dr. should definitely be answerable to your Pain Consultant though. Have you put in a complaint through PALS? My GP won't so much as give me an aspirin without it going through Pain Management first. She's already admitted she's out of her depth, so she covers her own backside that way.

I really hope that the new Pain Clinician gives you the break you need (and deserve) and puts you on a regime that actually manages your pain sufficiently. It's obvious that you're being underdosed. It's becoming more and more common these days.

I'm moving on to Tapentadol this weekend Slow Release with a couple of Immediate Release thrown in. It's taken a year and 2 different clinics to get that change and get off Buprenorphine (causes me migraines). Am dreading it, because the dosage is too low, but I had to agree to it or be stuck on the Bupe forever.

Please let me know how you get on. Will be thinking of you xx.

P. S. Am guessing you've already tried a TENS machine?

Reply (1)Report

Daz75 in reply to emmy-loue

Hi emmy-loue

There's no need to apologise your kind words mean another.

We have a lot in common I was complete gym fanatic nearly a competitive bodybuilder (weightlfter) it was my life, my total identity as person. I hurt my back getting my little boy out of the back of my car. I thought I was indestructible (like you do when younger) but soon got brought down a peg or two. I'm 45 on Monday, I don't have the lifestyle to match I really don't. Like yourself exercise is not just physical is very much mental and a stress reliever. I've been on all the cognitive courses to do with mindfulness and meditation.

As for a TENS Machine, didn't get on with it.

Again, thank you for your kind words. I will also be thinking of you xx

Darren

Reply (1)Report

Delzek in reply to Daz75

Darren in the UK you can request from the local health authority for a new Dr, when they give you a new surgery they try to keep you in your catchment area ,but if you explain you have tried to change within the area with no results then they "Will " put you in the next nearest catchment area and the surgery they give you will accept you Regardless! But you have to contact the area health authority first. I was told that by my own Dr who asked me why I wanted to leave, I explained why I asked

Reply (1)Report

Daz75 in reply to Delzek

Hi Delzek

I have tried to change Drs Surgeries in my catchment area the problem I had was when I firstly called the alternate Surgery I spoke to the Manager of the Surgery and she told me I was like you say out of the catchment area, she apologised but told me she will try and help me and she would get back to me (famous last words). When she didn't get back to me I called that Surgery back I managed to speak to a receptionist. She apologised that the Manager wasn't there. I then asked her about my situation. To my absolute disbelief she said I'm looking at the board of people's names as we speak and we have patients from my village in their Surgery. I then explained the conversation I had with her Manager. I think a hole opened up and she dropped into it. On a serious note that's no mistake something has happened and possibly my name has been mentioned. I have never been a problem in my Surgery and always respected the Dr and patient relationship. But this is clearly wrong. Under GDPR Regs which have clearly been breached. They breached all confidentiality laws if they have discussed my medical history without my permission. Thank you for you message and advice which may come in very handy. I feel violated and discusted if communities are working in this manner.

All the best

Darren

Reply (1)Report

Delzek in reply to Daz75

If you have been discussed about without your prior agreement then it comes under "Breach of the Data protection act " as well as "Failure in the Duty of Care" both serious offences for those who should know better! I would honestly contact your local health authority and tell them of your suspicions at the same time! I think they would find an agreeable alternative Surgery for you ASAP rather than have a possible case against a Dr in their jurisdiction. Good luck Daz let me know how it goes.

Reply (3)Report