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Fibromyalgia Action UK

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I have put the question below as it was too long to put in here.

Sookie profile image
14 Replies

My doctor has told me that the 'powers above her' have written to all the doctors saying they must get their patients off pain relief and sleeping tablets. She has already started stopping mine and will do so each month until I am completely off them. I told her i was in so much pain that i actually hoped she would give me something stronger, she said this is what happens, eventually I will need more and more if I don't stop now. I have had fibro for 3 years, I'm 70 years old and now in total despair about what I am going to do. Sometime I am in so much pain and so exhausted that I cannot get out of bed. I feel my life is becoming unbearable and this will just push me over the edge.

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Sookie profile image
Sookie
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14 Replies

I expect it more to do about money than anything else although

No doctor likes to prescribe sleeping tablets, like you I could not

Manage without pain control or sleep relief.

Don't worry to much ask to be referred to the pain control nurse

At your hospital, do it as soon as you can and she should sort

Out your needs, no one in this day and age should be in pain

Saying that I don't think much takes the pain away completley

Just takes the edge off.

She can't refuse your request to see a pain nurse.

Live viv

Sookie profile image
Sookie in reply to

thank you, I will ask but I do keep asking her to refer me to the pain clinic but she won't, she says they will only do the same as her, get me off of them. I wouldn't mind if my condition would go away, I would expect her to be getting me off them but of course it won't

LindseyMid profile image
LindseyMid

Can you get a referral to the pain management clinic. It is unethical for a doctor to remove pain medication from a patient in pain without providing some form of alternative (unless the patient is in immediate danger from the medications).

Sookie profile image
Sookie in reply to LindseyMid

Thank you, I would try for another doctor but I belong to a fibro help group and they all say the doctors around here are awful.

Cookie72 profile image
Cookie72

I can understand the sleeping pills being stopped but not the pain killers, what ones did they give you Sookie, gentle hugs ...Dee xx

Sookie profile image
Sookie in reply to Cookie72

Tramadol and gabapentin for the pain and clonazpan 500 microgrames 3 times a day for panic attacks, gentle hugs - Sookie xx

spidey profile image
spidey

dailymail.co.uk/health/arti...

tulips123 profile image
tulips123

That's appalling! At 70, what do they expect you to do, to be able to manage pain levels to give you any quality of life? That is just plain WRONG, inhumane even. You must fight this, I think you need some kind of an advocate. I'm not sure, but wonder whether PALS would be able to help with this? There must be leaflets in your surgery, with contact details. I wish you all the best. xx

Sookie profile image
Sookie in reply to tulips123

I have been on the same amount for 3 years now and nothing has changed apart from her attitude and she is blaming the National Health saying it is going to happen right across the country. She doesn't really believe in fibro. Thanks for your help I will try to get somebody to help me. xx

tulips123 profile image
tulips123 in reply to Sookie

Your gp is rubbish, and has no compassion. My gp is amazing, but the others at the surgery are also very good. Knowledgeable and caring. A couple of my meds are very expensive, but after trying cheaper versions, she will give me whatever she thinks is necessary. I would like to be a fly on the wall if a Civil Servant or even the Prime Minister tried to tell her how to treat her patients!

Please try to find some help. Keep me posted, and if you have problems getting the right kind of help, feel free to send a message. Perhaps we can work something out between us to find the right place to go. Take care xx

in reply to Sookie

Hi Hun

That is terrible, is there anyway you could consider changing to another GP or another practice. My GP has been brilliant for me and most days, with the rights meds, my pain is manageable. Some GP's are crap and others are great, it is often a case of luck or if you are getting nowhere,

My sleep is rubbish but that is not my GP's fault and she has tried everything I have suggested. I do look up drugs and other medications to try and see if they are worth trying. I don't see why you should have to suffer like this. Is there an alternative GP you could try?

mimiwen profile image
mimiwen

Dear Sookie, I really think you should complain about your GP. I think what she's saying is simply rubbish! You have a recognised condition and you have a right to decent treatment for it. If she doesn't believe in fibro I think you need to find a GP who does. You are in chronic pain and you have a right to be referred to a pain clinic. I'm really shocked by the way you are being treated, I feel so upset for you. I do hope you get better help soon. xx

Sandy247 profile image
Sandy247

I have seen an article about the Govt telling GPs to cut down the amount of painkillers and sleeping pills that are prescribed because 'we are turning into a nation of addicts'.

I'm starting to think that the Govt hates the sick, elderly and disabled. First they attacked us directly with the Welfare Reform bill, PIP replacing DLA, etc, etc and now they seem to be attacking those who help us i.e GPs. Telling them to cut down on medication is ludicrous. I can appreciate that there may be a few patients in each practice who just get repeat prescriptions of painkillers/sleeping tablets without seeing their GP from one year to the next and perhaps because of this they are not addicted as such but just take these medications by habit even though they may not necessarily need to.

I also hope that every GP will treat each case independently and not reduce pain/sleeping medication for all of their patients in one blanket measure.

The Govt has said that 'counselling' and other therapies should be used instead of medication I'm sorry but I don't know where all of these extra counsellors are. Is the Govt going to provide £millions to employ the thousands of extra counsellors and alternative therapy practitioners? No - I didn't think so. So basically, they want sweeping reforms within the NHS to reduce the annual prescription bill but are not prepared to use any funds to achieve this. Has the Govt never heard of speculating to accumulate?

At my GP's practice, you are put on a waiting list to see a counsellor [about 12 weeks long] and then you can only have a maximum of 6 appointments! What good is that? I expect Pain Clinics are over-run with patients and I am sorry, but when my pain is excruciating and I am in tears, I do not think 'What was that CBT thing we learned at pain clinic?' - I reach for the medication and I can guarantee anyone else, including the Govt ministers who came up with this garbage, would do the same.

I wish these Govt ministers who make these rules could walk in our shoes for a week - feel the excruciating pain but be told they have to use CBT to control it, suffer from Fibro-fog, swollen glands, stiffness, nausea, headaches, fatigue or insomnia etc and then still think it necessary to tell the GPs to reduce pain/sleeping medication.

S x

Makie-Uppie profile image
Makie-Uppie

Yes this is what they are at and it is to do with money rather than patient comfort. These money men need to be dipped in boiling hot acid so they can get an idea of what people are going through and they would soon change their mind.This always happens when money men are involved, they consider the cash theirs, save some and give themselves a pay rise. If they can not do that they invent a job or money.

Then because they want more become callous and start cutting resources to those who need it most making up excuses as they go until there is a disaster (Grenfell Towers) then then show their true colours, run for cover and start pointing fingers.

Just wait until this pandemic has calmed down and they want to recoup the cost, just look at the nurses pay rise, they are lucky it was positive, some people consider them overpaid.

I have met very wealthy people in hospital who could have bought the place and they were moaning about the free care they were getting, it just wasn't silver spoon treatment they wanted, but they were unwilling to spend their money, unfortunately I told them what I thought of them and almost caused the stall to have heart attacks laughing.

Some want to bring back the work house, conscription and if you are terminally ill and non contributing would you not be better off dead. There was a hospital carrying out involuntarily euthanasia on dementia patients a few years ago but that was all fudged about with until no one was found to be responsible. (I personally agree with the right to die, but this is not what they are talking about or doing).

After all this the next pandemic could hit tomorrow, it could be a much worse virus than Coronavirus (Super flu, Ebola, Sars ,Hanta Virus, Nipah-not heard about that yet have you perhaps, etc) and the health system could just collapse. It is the natural way of things.

The powers that be know this, they do not care, it is the policy for natural disasters to say and do nothing until the dust settles get the plebs to clear up the mess, take the responsibility, cling to power, put money in to their bank account (look at the PPE shenanigins) and stick a medal on their butt.

I mostly sit online and watch what politicians say and they all consider the rest of the population stupid, it's in the detail, it is the only thing guaranteed to put me to sleep

Being really cynical this could have been whipped up in to a massive money making exercise for someone.

Don't worry they will save our pennies to make themselves pounds.

Sorry pain makes me grumpy.

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