Author Topic: CRI/CGL concerns  (Read 4507 times)

Foxbrush

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CRI/CGL concerns
« on: November 13, 2016, 06:41:41 PM »
This is a long story, so I'll have to cut it short, but here goes.

1. I became 'dependent' on OTC codeine products about four years ago. This is where it began for me.

2. I approached what was then an NHS DTS who put me on Subutex.

3. I am no longer using any Opiates despite severe chronic pain and strange fever-like symptoms from possible Endometriosis and/or a thyroid problem. We are talking easily level 9-10 pain/symptoms bad enough to cause me to collapse and become literally delirious, as in not have any awareness of what's going on around me, all my thoughts become disordered and disturbed, I feel very dizzy and disorientated, see things that are not there,collapse, my face is whiter than a ghost, my eyes look sunken, I'm unable to stand up straight, I'll do this daft incoherent whimpering/chattering and have flu/fever type symptoms and generally scare others unfortunate enough to witness me in this miserable condition.
This causes others to think I've 'taken something' which makes it even more upsetting. It's bad enough without the lack of understanding from even those closest to me.
This was the catalyst for my codeine issue and it's never been taken seriously or investigated. We have recently found out why too, it now seems any health issue I present is being passed off as 'the result of drug abuse' even though this problem predates my use of ANY addictive medications . Nobody has ever taken this seriously, and merely passed it off as 'period pain', but I assure you it's NOT. I cannot take hormones either as they make it worse, so I apparently refuse treatment. I've endured appointments with them in this state, and been terrified of accidentally showing any sign of my obvious distress, limped through it as best as I could, then dragged myself into some secluded corner and had to have someone come pick me up as I couldn't drag myself back home even though it's just a ten minute walk. *SIGH*.

4. I feel very isolated and am facing all this totally on my own.

5. About three years ago I became dependent on 'legal high' Benzodiazepine analogues. Again due to the unaddressed pain issue.

6.  I was put under enormous pressure by CRI/CGL to reduce, or lose the Subutex. I managed to taper off them, with no direct medical assistance. I was given TWENTY EIGHT days to get off them AND provide a clean test!. Of course this was scientifically impossible and incredibly dangerous, so it didn't go their way. I tried my best to explain why, going as far as to direct them to Professor Heather Ashton's manuel, an incredibly useful source of information regarding Benzodiazepine dependence and withdrawal, so if in need please check it out. 

7. I now deal not only with debilitating chronic pain, but protracted Benzodiazepine withdrawal too. I feel like my body is full of bees (constant buzzing/vibrating feeling), severe flushing and sweating, I only need to walk a few meters and my clothes and hair are drenched  (bad enough now that I'm a recluse and am too embarrassed to be around others and this is aggravated by the pain issue too), constant headache, and a load of other symptoms that are pushing my limits of endurance. I DO NOT know how much longer I can keep this up. All CRI did was offer me antipsychotics. I am not mad, I do not suffer psychosis or depression, I'm quite a resilient individual, and I've survived lots of negative events without needing any more habit forming 'medications'. Both the pain and this seem to 'mimic' the effects of a lot of drugs of abuse unfortunately, which makes explaining it impossible. This is the first time I've even tried so please don't be afraid to ask me anything and I'll do my best to answer. 

8. No regular GP will see me, I've been told I have to see a doctor with CRI no matter if the issue is totally unrelated to drug addiction. CRI do not operate like a regular GP surgery, and I see a doctor once every two-three months!. I want my thyroid checked and I want refering to someone about the pain issue because I know exactly where it could lead me back to, but these bizarre symptoms are NOT something I can discuss, nor would I want to discuss with CRI. So do I ask CRI to deal with my pain issue and strange symptoms then?. We are trying to get this clarified in writing. What would happen if I ever became seriously ill with something like meningitis or sepsis?!? *shudders*  ???

9. A false positive U/A for Methadone caused by Diphenhydramine in a cold medicine (renowned for causing false positive U/A results for Methadone), which absolutely CANNOT  be taken with Subutex as it causes sudden withdrawal. Methadone users must be in withdrawal before beginning Subutex. I of course tested positive for both but was quite ok lol. I am terrified to take ANY medication in case it leads to a false positive U/A. I am SO lucky not to be on probation or under court ordered treatment as part of child custody issues and if I had kids, I could have lost them!. I have NEVER been arrested or so much as even cautioned by the police. I want to learn to drive, does anyone know if this could effect that or come back to haunt me in any other way in the future?. I absolutely hate U/As, I find it like a full body search, they are NOT foolproof and have nothing on the accuracy of a lab GC/MS test, and if I am in pain it can take me twenty minutes to provide one  too.  >:(

10. I haven't touched Benzodiazepines since September, but am still testing positive for them and being threatened with rapid reduction of my Subutex as their 'rules' aka targets stipulate twenty eight days. Trust me if that happened on top of the Benzodiazepine withdrawal symptoms and the pain issues I would most certainly be in serious trouble. It honestly feels as if I am going through this hell for nothing. If this happens on top of everything else going on at the moment I worry my existence will disintegrate tbh. I am finding the whole thing very invasive, very upsetting, there's no way I could possibly tell them or anyone else what's really going on. I have never used illicit opiates, and do not share the same chaotic lifestyle some illicit opiate users do. However, I feel tarred with this brush anyway. I have very liberal feelings on drug issues and cannabis prohibition, which they hate but I stand by my right to hold those beliefs.

11. I have to collect my Subutex daily on supervised doses because I'm still testing positive for Benzodiazepines, and if my pain is really bad I honestly look and feel VERY unwell, and appear 'out of it', either high or in severe withdrawal. They are also threatening me with having to pick my Subutex up on Saturdays too, how they think this will suddenly get them that negative U/A is anyone's guess. It's a fifteen minute walk, but it'll easily take a drained, delirious me an hour at best each way, then I often face taunts and threats from other people around the pharmacy too, either the other clients (easily ignored) or the 'mothers against' (harder to ignore as I am VERY opinionated). I've taken to playing Pokemon Go, as it's harmless fun and also gives me reason to look 'distracted' which puts others off talking to me and I can hatch my Pokemon eggs and battle at the Pokemon gym down the road everyday which always amuses me lol.
Sadly I've literally collapsed trying to get there and back in excruciating pain before, and I owe my sanity to a couple of wonderful strangers who have sat with me till I've felt ok enough to get home. I have a detailed explanation of my issues on an emergency medical app on my phone, and a note in my bag telling others where to find it, as I worry about landing up in hospital and not being able to explain what's wrong with me. I don't like having to do this but it's a must. Leaving the house in that condition is a pretty terrifying experience, especially if I feel disorientated, have fever symptoms and feel dizzy. They ask for my date of birth EVERY time and on quite a few occasions I've been putting all my resources into not collapsing that I've forgotten my own damn DOB, given them someone elses or hesitated a good twenty seconds. :-[


I know exactly what will happen once I'm off the Subutex if these issues go on unaddressed, especially given how 'maintainance' no longer exists. The Subutex has saved me from a burst stomach, stomach ulcer, liver and kidney damage etc and spending ludicrous sums of money on OTC pills. If you do find my post here and think you know who wrote it, then this is how I really feel and I am not going to hide it forever. I can't go back to that place.


 :-\
« Last Edit: November 13, 2016, 07:05:38 PM by Foxbrush »
When they come downstairs from their Ivory Towers, idealists are very apt to walk straight into the gutter. ~Logan Pearsall Smith

simon

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Re: CRI/CGL concerns
« Reply #1 on: November 13, 2016, 06:55:48 PM »
Welcome to the forum, did the sweating start after you went on Subutex as opioids can cause very bad sweating. I think if you see your GP and ask to be referred to pain clinic, if they refuse then change doctors.
You shouldn't still be testing positive for benzo's ask them to send it to a lab or ask for an oral swab test.
I'm sorry to hear you are being treated in such a punitive manner, you can complain and maybe if you send Sapphire a PM she may be able to help. If you don't get a satisfactory answer to your complaint then you can complain to the commissioner of the service - likely find who they are on the council website. Please keep posting and let us know how you get along.
Do you have a local service user group?

Foxbrush

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Re: CRI/CGL concerns
« Reply #2 on: November 13, 2016, 07:14:29 PM »
Welcome to the forum, did the sweating start after you went on Subutex as opioids can cause very bad sweating. I think if you see your GP and ask to be referred to pain clinic, if they refuse then change doctors.
You shouldn't still be testing positive for benzo's ask them to send it to a lab or ask for an oral swab test.
I'm sorry to hear you are being treated in such a punitive manner, you can complain and maybe if you send Sapphire a PM she may be able to help. If you don't get a satisfactory answer to your complaint then you can complain to the commissioner of the service - likely find who they are on the council website. Please keep posting and let us know how you get along.
Do you have a local service user group?

At my next appointment I will be asking for a more accurate test yes. Stopping the benzos has been the hardest thing I have ever done. The codeine is a joke compared with them. The sweating is very new and has been going on since I stopped the benzos. It could be partially related to my messed up pain issue too but with no medical input I'll never know.  I have to haul a complete change of clothes everywhere with me it's so bad. I haven't had any side effects from Subutex thankfully. I'm on 8mg so not an enormous dose.

Every time I present this issue at to the GP it just results in them trying to ask CRI to deal with it. I am most certainly changing GP, but my tarnished medical history will follow me  ???

I've tried complaining before and if anything it made things worse.

Thanks for your reply through. I am considering a few options at the moment.
« Last Edit: November 13, 2016, 07:22:24 PM by Foxbrush »
When they come downstairs from their Ivory Towers, idealists are very apt to walk straight into the gutter. ~Logan Pearsall Smith

Foxbrush

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Re: CRI/CGL concerns
« Reply #3 on: November 13, 2016, 07:38:05 PM »
Also yeah there are a couple of groups, I used to go to one but it was pretty chaotic and unstructured.
When they come downstairs from their Ivory Towers, idealists are very apt to walk straight into the gutter. ~Logan Pearsall Smith

simon

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Re: CRI/CGL concerns
« Reply #4 on: November 13, 2016, 07:51:40 PM »
At my next appointment I will be asking for a more accurate test yes. Stopping the benzos has been the hardest thing I have ever done. The codeine is a joke compared with them. The sweating is very new and has been going on since I stopped the benzos. It could be partially related to my messed up pain issue too but with no medical input I'll never know.  I have to haul a complete change of clothes everywhere with me it's so bad. I haven't had any side effects from Subutex thankfully. I'm on 8mg so not an enormous dose.

Every time I present this issue at to the GP it just results in them trying to ask CRI to deal with it. I am most certainly changing GP, but my tarnished medical history will follow me  ???

I've tried complaining before and if anything it made things worse.

Thanks for your reply through. I am considering a few options at the moment.
Sweating could be thyroid related, see the GP or change practice, ask for pain clinic referral, you may be better on Methadone and then all pain killer options are open to help with your pain.

Foxbrush

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Re: CRI/CGL concerns
« Reply #5 on: November 13, 2016, 08:01:15 PM »
Yeah I am going to give that a try. I will be changing my GP soon too.

I have asked about Methadone on these grounds but I just got told 'no, never, you'd never get off it'. Plus nobody believes an opiate addict who complains about pain. In this backwards thinking, profit driven 'industry', it's a case of tiny fish, gigantic ocean.

I am very grateful for your patient, non judgemental reply too, it's been a while since I dared broach this subject and got a decent response  :)
When they come downstairs from their Ivory Towers, idealists are very apt to walk straight into the gutter. ~Logan Pearsall Smith

simon

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Re: CRI/CGL concerns
« Reply #6 on: November 13, 2016, 09:33:43 PM »
Yeah I am going to give that a try. I will be changing my GP soon too.

I have asked about Methadone on these grounds but I just got told 'no, never, you'd never get off it'. Plus nobody believes an opiate addict who complains about pain. In this backwards thinking, profit driven 'industry', it's a case of tiny fish, gigantic ocean.

I am very grateful for your patient, non judgemental reply too, it's been a while since I dared broach this subject and got a decent response  :)
Getting off Methadone is no different to Subutex and that's the least of your problems  and Methadone may help with pain, they're lying to you.
You should be treated exactly the same as anyone else in pain, ask for pain clinic referral and if they dare refuse ask for help from PALS - patient advice and liaison service and if that doesn't help complain to the clinical commissioning group.

Foxbrush

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Re: CRI/CGL concerns
« Reply #7 on: November 13, 2016, 10:38:05 PM »
I know, to them it's a step back though  ::). I will let you know if I have any luck.

I am getting fed up with the daily pickups though. It honestly feels like that's part of some agenda to push me out of the program though as they know how difficult it is for me. I've told them but they couldn't care less. I've never missed so much as one pickup either, not even when I've been convinced the world is ending and can barely put one foot in front of the other. I don't give up very easily, I'm quite determined not to give them the satisfaction of seeing me fail. I enjoy not being forced to trawl the pharmacies buying codeine products and destroying my health, they can't grasp this concept lol. This gave them the logic that if I was willing to trawl round pharmacies then I should have no issues with everyday pickups  ::)
When they come downstairs from their Ivory Towers, idealists are very apt to walk straight into the gutter. ~Logan Pearsall Smith

sapphire

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Re: CRI/CGL concerns
« Reply #8 on: November 14, 2016, 05:45:27 PM »
The horrible buzzing/electric type feelings from the benzoWD will go away. I've had to do a rapid detox myself after about 15 years on them, and thought it would never end, but I promise it does get better.

I also have a neurological condition and chronic pain, so I do know completely where you're coming from. I had to come off them as I was told by my esp that they would stop my script if I didn't.

I think speaking to Release would be a good idea for you. It's release.org.uk

Foxbrush

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Re: CRI/CGL concerns
« Reply #9 on: November 14, 2016, 11:24:42 PM »
The horrible buzzing/electric type feelings from the benzoWD will go away. I've had to do a rapid detox myself after about 15 years on them, and thought it would never end, but I promise it does get better.

I also have a neurological condition and chronic pain, so I do know completely where you're coming from. I had to come off them as I was told by my esp that they would stop my script if I didn't.

I think speaking to Release would be a good idea for you. It's release.org.uk

Yes I have visited their site on a few occasions and I am going to call them and explain all this. Thanks, and I'm sorry you've had to put up with similar. The sad thing is that any non related health issues I present to the GPs are now blamed on 'drug abuse' and they just call CRI. I got passed to CRI with a nasty virus and of course, nobody called me back and I never saw a doctor. When I did I got offered/pushed an antipsychotic drug for the flu. I honestly couldn't grasp that. So when it comes to health issues I've accepted it's a case of either put up and shut up, or get accused of 'drug seeking'. I mean come on, I know there's no magic pill for viruses but I just wanted to know it wasn't anything nasty.

I have no intention of ever going back on Benzos, however different getting off them is. I haven't made it this far to go back to that. I don't dwell on it too much and distract myself as best I can. I'm trying to shelve that chapter of my life and move on, but CRI insist on dragging it on and I intend to find a way to put an end to that too. Thanks again.
When they come downstairs from their Ivory Towers, idealists are very apt to walk straight into the gutter. ~Logan Pearsall Smith

sapphire

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Re: CRI/CGL concerns
« Reply #10 on: November 15, 2016, 04:17:26 PM »
If your GP surgery is not giving you proper primary care, and are trying to blame all that ails you on past drug use (and I presume you've tried seeking more than 1 GP at the surgery?), then you can ask to speak to the practice manager and complain. If you don't feel comfortable doing that, you can speak with PALS which is basically the NHS complaints service.

Regarding CGL, have you thought about speaking with the PHE representative for your area? They are asking to be made aware of incidences where people are either being forced out of treatment, or where their lives are being made so miserable by their prescribed that they're being forced out of treatment.
I've had really good outcomes with speaking with them in the past.

seven

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Re: CRI/CGL concerns
« Reply #11 on: November 15, 2016, 05:06:37 PM »
Have you had your thyroid checked? My wife had similar problems caused by that

sapphire

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Re: CRI/CGL concerns
« Reply #12 on: November 21, 2016, 03:44:14 PM »
What's going on with this Foxbrush, have you made any headway?

Foxbrush

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Re: CRI/CGL concerns
« Reply #13 on: December 05, 2016, 01:14:56 PM »
What's going on with this Foxbrush, have you made any headway?

Hey, sorry for being quiet, I am so sick from Benzo withdrawal now that I'm struggling to hold my life together, let alone begin to explain all this to anyone. I still intend to though, when I can sit up straight.  :(
When they come downstairs from their Ivory Towers, idealists are very apt to walk straight into the gutter. ~Logan Pearsall Smith

sapphire

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Re: CRI/CGL concerns
« Reply #14 on: December 09, 2016, 05:12:25 PM »
Hang in with the benzo WD, it will get better, and you will feel better without them eventually, although I know it doesn't feel like that at the moment.

Nothing really seemed to ease it for me bar time, and the first 4-6 weeks were definitely the worst.