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The UKFibromyalgia Forums • View topic - Oh dear, high hopes dashed



Oh dear, high hopes dashed

Anything to do with the NHS or Private Healthcare.

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Oh dear, high hopes dashed

Postby rich44 » Tue Aug 26, 2014 10:10 am

Thought I'd found a better GP at my practice, just been signed off for a month and he said can't see you going back to work anytime soon.

Then just as I was leaving he said

"there must be something in your life you're unhappy with? "

If it hadn't been an 850am appt I'd probably have really snapped at him. In the end I just said yes there is, not being able to do the things I want to do, depression is caused by the pain NOT the other way round.

So basically the Dr I thought really understood is one of the it's in your head lot.

He won't prescribe painkillers either just bigger dose of duloxetine.

Then to top it off pharmacy moans at me because our NHS exemption cards expired in June and not had new ones yet, we only renewed tax credits at the end of July and they never arrive before September.

So I'm in terrible pain today knees, hips and hands being the worst and I'll have to go scrounge some oramorph off the mil again.

I'm so tired and fed up, I just give up.
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Re: Oh dear, high hopes dashed

Postby Lindilou » Tue Aug 26, 2014 10:23 am

He said "
"there must be something in your life you're unhappy with? ".

I'd turn that round to my advantage, go along with the depression, see a CPN other professional etc, who could quite easliy contact your gp to recommend painkillers - catch my drift rich?

But so sorry you doc thinks it's all in your head.
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Re: Oh dear, high hopes dashed

Postby rich44 » Tue Aug 26, 2014 10:30 am

I already tried that I was referred to mental health, they never got in touch.

I don't have any faith in mental health provision, I needed help badly in my early 20s and I saw a cpn once and I was classed high risk of suicide and they still didn't do a thing, so wasn't surprised not to hear from them.

Maybe I should've said yes my gp not helping me ;)
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Re: Oh dear, high hopes dashed

Postby Lindilou » Tue Aug 26, 2014 10:35 am

Then I would make an official complaint to your local medical board re your doctor, in writing, this is disguisting !
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Re: Oh dear, high hopes dashed

Postby rich44 » Tue Aug 26, 2014 11:47 am

Yeah I know what you mean but any fight I had in me is long gone.

I'm going to write to Norman lamb about the waiting times for appointments as that's part of his remit.

At least he did say today can't see you going back to work anytime soon.

Just don't know what to say/do they don't want to prescribe painkillers at all.

I'm actually thinking I might write to the practice manager about lack of painkillers.
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Re: Oh dear, high hopes dashed

Postby rich44 » Tue Aug 26, 2014 1:27 pm

Have written to the practice manager will drop it in later
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Re: Oh dear, high hopes dashed

Postby MPSGuy » Tue Aug 26, 2014 7:27 pm

Did he give a reason for declining pain relief? What over the counter things have you tried for pain - somethings are reasonably powerful like nurofen plus and paramol, although they will usually only let you buy a few at a time.

Personally I don't think I would cope very well without my prescription strength co-codamol, so I can understand your frustration, the pain can really wear you down.

There is nothing wrong with the GP trying to explore mental health concerns because chronic pain does cause depression and anxiety, however that is not an excuse not to offer adequate pain relief if required.
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Re: Oh dear, high hopes dashed

Postby rich44 » Tue Aug 26, 2014 7:53 pm

No I appreciate the mental health angle not that any of them have ever helped that side of things last one was 300mg of venlafaxine a day, now we're doing 40mg duloxetine and rising.

He said you've had
cocodamol
dihydrocodeine
nefopam
Tramadol
Naproxen
Nurofen plus (alternated with cocodamol)
And probably others I've forgotten. I was refused over the counter cocodamol in the local pharmacy once because "they're only for 3 days and you're buying too many"

The tramadol did help but made me so sick every few days the others can't say I really noticed any benefit from them.

He said that "I don't want to prescribe morphine because 5 years down the line you'll be getting through 60ml 5 times a day"

I didn't ask for any painkiller in particular just asked about the options, he seems to think the duloxetine is all I'll need.

Have dropped a polite letter in saying I'm not making a complaint but I really need to sort out adequate pain relief right now not December.

My gut says they're trying to get out of it being them prescribing something so that it's the pain clinics responsibility. I might be wrong but just feels that way.

I'm having to teach the wife to drive because it's becoming too painful to hold the wheel.

Thanks for the reply.

They (the drs) make me feel awful because every time I go I ask for painkillers of some description and every time I get fobbed off and it's often a different Dr so it feels like I'm going round asking all the Dr's hoping one will give me something. I feel like some kind of druggy begging for his next fix :-(

The way things are I'll be looking in the shadier spots for illegal drugs.

I'm so fed up
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Re: Oh dear, high hopes dashed

Postby FluppyPuffy » Tue Aug 26, 2014 9:27 pm



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Re: Oh dear, high hopes dashed

Postby rich44 » Tue Aug 26, 2014 9:44 pm

I've seen the same gp several times then another several times the one I was seeing just retired....

I've tried cyclazine but it's not nausea etc it's full on whole day retching up bile not even keeping water down. Then afterwards feel worse than ever from all the ripped muscles from heaving so hard.

We tried the modified release ones too, same result. Seeing as they are an SSRI too and I suffer terrible sickness with migraines I do wonder if they affect that mechanism because they're not just an opiate?

Who knows but I don't get on with them that's for sure, thanks for the suggestions though :-)

Stupid thing is doing what they're doing is going to force me out of work and onto benefits, with the right painkillers we might be able to find a balance between pain and meds to be able to go to work but to just say no because of where you might be in 5 years time.

Ffs they might find better treatments in that time or I might get trampled to death by an escaped elephant before then. It's a really daft argument.
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Re: Oh dear, high hopes dashed

Postby zappa20 » Wed Aug 27, 2014 1:29 am

Sounds like your GPs have already tried you on most of the usual suspects of painkillers. Duloxetine or another equivalent should be more effective in dealing with nerve pain than any other traditional painkiller including those which are morphine based. That is why they're so widely prescribed. Maybe a combination would work better for you.

A GP will likely be reluctant to prescribe a controlled opiate for long term management of chronic pain, before they've exhausted everything else. Partly because it's been proved opiates are less effective for this type of pain, usually dosage has to be increased over time to be effective, they're highly addictive, with lots of side effects, depressed respiration being the most serious.

Improved sleep quality would be more likely to improve your pain thresholds, and I know you've been trying alternatives to achieve this, as it can be very difficult. Would your GP be happy to prescribe something to help you sleep better or for longer periods so that you reach the important stage of restorative sleep. If you perhaps got better sleep you might not be as stressed as you are just now and anyone with Fibro knows stress is a killer for causing heightened symptoms and fatigue.

Is your GP aware of the fact you are taking a controlled drug which isn't prescribed for you, but. For your MIL? If he is that will make him even more unlikely to prescribe something similar for you because it leans towards you being a bit irresponsible in their mind and therefore someone who could overdose due to ignoring the prescribed dosage.
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Re: Oh dear, high hopes dashed

Postby rich44 » Wed Aug 27, 2014 9:09 am

No they don't know and it's not a regular thing it's just 5ml in emergencies.

What's worse tho giving someone something addictive now or leave them to feel their life isn't worth living?

Drugs to help you sleep are equally addictive so if they're using that logic for painkillers I expect they'll use the same for those. They're well aware of all the facts about everything else.

There is some thought it now might not be fibromyalgia as could be ms with the other neurological symptoms but until I get an appointment to see the neurologist and then mri etc who knows.

Something has changed because I've had this for 11 years now and last Oct it all changed I got abdominal pain on top ended up in hospital and have slowly gotten worse since then.

I don't know but there must be other options to look at I just can't survive on paracetamol. I don't mind having a discussion with gp about what the options are and where we go so we can both make an informed decision but to just say no there's nothing you can have just to me smacks of "it's in your head"

As for the duloxetine I've been told that about it killing the pain when I was on

Citalapram
Seroxat
Prozac
Mirtazipine
Tramadol (SSRI aspect)
Venlafaxine 300mg

So I'm a bit sceptical about it but I'm trying anyway.
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Re: Oh dear, high hopes dashed

Postby MPSGuy » Fri Aug 29, 2014 1:07 pm

Well it seems like they have tried you on a lot of different pain killers so I can kind of understand their reluctance to keep prescribing drug after drug.. It might be the right time to see a pain clinic specialist.

I do wonder if the Tramadol was working if they couldn't just find something to stop it from making you sick all the time, that would be an ideal solution.

There are also other medications like Gabapentin and Pregabalin that can sometimes help with pain.
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Re: Oh dear, high hopes dashed

Postby rich44 » Fri Aug 29, 2014 1:44 pm

Hi been on both of those the Pregabalin worked for awhile then stopped no matter the dose, Gabapentin made me psychotic.

They're reluctant to try new painkillers but happy to throw antidepressant after antidepressant at it.

I had cyclazine for being sick but being sick doesn't do what was happening justice. I'd be relatively ok on them still in lots of pain but maybe 5/10 instead of 8 for a week then I'd spend 48-72 hours in the toilet literally heaving uncontrollably even with nothing in my stomach even anti sickness injection didn't stop it.

I've had 3 visit to the pain clinic

1 saw consultant agreed to accept me

2 group session explaining clinic

3 saw nurse who asked me a questionnaire so I drove 60 miles for a 10 min questionnaire.

Next appt is December which is why I went back to my GP. I've now complained to the practice manager, haven't heard anything back. The pain I'm in today is horrific and the undiagnosed abdominal pain is also worse than ever.

Just getting to the point with no medical support where it's not worth living tbh.
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Re: Oh dear, high hopes dashed

Postby zappa20 » Sat Aug 30, 2014 12:39 am

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