NHS/NICE has decided to reclassify Chronic Pa... - Pain Concern

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NHS/NICE has decided to reclassify Chronic Pain today, into Primary and Secondary categories in the UK.

stampede187 profile image

I am not sure if this has already been posted. NHS/NICE has decided to reclassify Chronic Pain today, into Primary and Secondary categories in the UK. It seems that anything that cannot be 'seen' or 'found' to have a cause is going to be 'Primary', and will have fewer treatment options from now on.

"Chronic primary pain has no clear underlying condition or is out of proportion to any observable injury or disease."

"Chronic secondary pain is a symptom of an underlying condition. Chronic secondary pain and chronic primary pain can coexist."

Exercise, Psychological, acupuncture, and electrical therapies (like TENS) ARE recommended for treatment.

There is a recommendation that Pharmacology should NOT be used to treat chronic pain (except for certain anti-depressants!) in people over 16. It also recommends that patients with 'Primary' pain (such as neuropathy, fibromyalgia, CRPS, FND) that are currently on medications should be reviewed and meds reduced/removed (basically).

Please let me know if you think I misunderstood these new guidelines below:


17 Replies

Hello. I've only just scanned through the guidelines but one thing I did read that TENS is NOT recommended and should NOT be offered for people with Primary Chronic Pain.

The recommendations,in my mind, sound horrendous.

I feel as though they are actually stating that this category is all about the conditions are "All in the mind." Be interesting to see if anyone else read the recommendations similarly?

I agree. As someone who has been diagnosed with fibromyalgia with no underlying causes of pain, I am horrified by this report. Although I do understand their desire to reduce medications, this definitely seems to be dismissing all chronic pain without a discovered medical reason. In my mind they should be spending their time trying to discover that reason and not dismissing it.I am practically wheelchair bound due to my allegedly "in my head" chronic pain and fatigue and definitely house bound without assistance.

I thought we had progressed from this archaic way of thinking but it looks like the medical profession has taken a step backwards.

stampede187 profile image
stampede187 in reply to GongYoo

Absolutely a step backwards. As you say, for you this is could affect you directly, and your treatment options. For me, I suppose I am lucky (?!!?) to have a couple of 'secondary pain' diagnoses, and so should have access to more. I feel so, so awful for people that are currently benefitting from their current treatment, and that could be affected by this :-(

Apologies re: tens misunderstanding. Yes, horrendous is a good word.

I think there are a lot of issues with the Nice guidelines,as already g/p are reducing the opaids they are percribing,

It isn't that Chronic primary pain in all in the mind, it is that it is all in the brain. One of the causes of Primary Chronic pain is the brain misinterpreting the signals that are being sent, (or not being sent) up from other parts of the body.

This distinction between primary and secondary is a useful step forward especially for those with conditions that cause constant acute pain, such as many of the arthritis conditions, and things like connective tissue disorders like Ehlers-Danlos where there is a constant acute pain as the joints move, and where painkillers that work on acute pain do work.

So I can understand that if people are taking painkillers and they aren't working, and there is no physical cause of the pain, then this will be helpful.

The problem is that diagnosis is often poor when it comes to conditions that cause pain, and many, especially women, are assumed to have no underlying cause and will automatically be lumped into Primary Chronic Pain when they should be in Secondary Chronic Pain.

For myself, I have osteoarthritis, Ehlers-Danlos, and possibly to another form of arthritis to, so I will welcome guidelines that will allow me to continue with pain medication. It should stop the odd rogue GP or pharmacist from trying to cancel my paracetamol prescription! More than once it had been mooted that because I still had pain after 3 months that there was nothing wrong and I should be offered psychological support. I pointed out that I had chronic acute pain. These guidelines were actually produced over a year ago by the IASP (International Association for the Study of Pain) and was able to use them to dispute the rheumatologist's diagnose of fibromyalgia (I didn't meet the criteria) and justify asking for second opinion.

So yes, you haven't misunderstood them, and although this is a very important and useful step forward in the treatment of pain and will stop some people from getting the wrong treatment, there will still be some people that will be assumed to have Primary Chronic pain when in fact they just haven't have the proper diagnosis that support the label of Secondary Chronic pain.

This is going to cause a lot of problems for people with chronic pain but it is only guidelines, your GP or Consultant is under no obligation to carry out these guidelines to the letter. Unfortunately there will be those in the medical profession who will follow them & I think we all have a right to be extremely anxious about this. My recent experience though shows that there are those in the medical profession who believe strongly that it is their job to provide the best pain relief possible.I have Fibromyalgia, Degenerative Disc Disease for which I had major lumbar spine surgery two years ago. With those & severe Osteoarthritis in my hands & wrists, again having had surgery for this, I am in chronic pain &, the bit NICE seem to have missed, I have acute periods of pain.

Three weeks ago I had a video consultation with my Pain Management Dr, I have been on maximum doseTramadol for the last ten years but it is not working so well now. She suggested coming off Tramadol & going onto Buprenorphine patches, a stronger opiate. I saw my GP yesterday & I spoke with him about the NICE guidelines. He said that there is a lot of leeway in those guidelines & that he has no problem in prescribing Buprenorphine.

It’s obviously going to be down to each individual Dr has to how they interpret these guidelines & I appreciate that I have both an excellent GP & Pain Consultant whereas others may not be so fortunate. Remember that these people work for us, not for NICE, easy to say I know but if your GP wants to refuse to continue prescribing pain relief medications then it is your right to ask to see a different one.

Stay strong, stay positive & I would suggest everyone who is on pain medications for chronic pain talk to their GP to voice your concerns & to ask where they stand in relation to these guidelines

CDPO16 profile image
CDPO16 in reply to psytrancer

I hope other GPs will act in the same way as yours.

Hi Leigh, whilst unfortunately some medical professionals still label people with unexplained chronic pain as having Fibromyalgia without looking into the real causes of their pain there are Drs who use the term in relation to a real disease. Fibromyalgia was recognised as a distinct disease in 1995 which has as its base problems with the central nervous system. It has at times in medical research been referred to as a neurotransmitter dysfunction disease. Various neurotransmitters have, for as yet unknown reasons, gone awry. For example, there is overproduction of Substance P, the so called pain hormone, which allows ‘pain gates’ to remain open long after the original source of pain has gone away. There are low levels of Melatonin, Serotonin & Dopamine, these three all play a role in pain perception, mood & sleep. The way in which the hormone Cortisol, the wake up hormone, behaves erratically in its production causes sleep problems. Levels of Cortisol build up as dawn arrives and plays a major role in waking us up & giving us the means to get up & go to work, school, college etc. It then decreases its level as night approaches enabling other hormones such as Melatonin to increase in production, along with others, so as to help us sleep. In Fibromyalgia the pattern of Cortisol production has broken, levels can rise at 2am causing awakefulness yet in the daytime levels can suddenly drop making it difficult to stay awake. There are many other issues with neurotransmitters in Fibromyalgia but the above gives, I hope, meaning to what a physiological disease is, it has its roots in problems arising in the body without any input from the patient in much the same way as MS, Rheumatoid Arthritis & others. I mention those two as they have parallels with Fibromyalgia in that there weren’t believed to be real diseases until the mid part of the last century. Part of the problem with misunderstanding Fibromyalgia lies at the feet of Drs who will give a diagnosis of Fibromyalgia when tests all come back negative & it’s obvious the patient is looking for a label. I do not disagree that one has to look after the body, ill or not, but when a disease has as its root a screwed up central nervous system you cannot say that any method medical or otherwise, will lead to healing, unfortunately Love from psytrancer

This is what happens when you allow Gov’t to take over your healthcare.... you are no longer in charge of how your feeling and treatments you need. This is awful and a slipper slope to withdrawal other much needed therapies down the road.

Unfortunately I think many GPs find it easier to just give you a prescription, it doesn’t take up too much of their time.

Given the consultation a few months ago the NICE guidance isn’t a surprise. There’s nothing in the guidance that would address any of the concerns I, or other people I know, raised in the consultation.Also they seem to be making some sweeping assumptions here. My pain is neuropathic which they seem to automatically sweep into ‘primary’. But I have a diagnosis from a neurologist stating it’s a result of physical damage to the nerve. So we do know the cause and it can’t be resolved.

However my tried and tested (and only effective) treatment for many years is being limited.

What is happening to pain management units? Is much of their work disappearing?

Hello Stampede187, thank you for the link. I am one of those who has been treated for many years as having it all in my mind. I have arthritis and it as been around since my early thirties. Just recently I had a total knee replacement which confirms it is not imaginary. How ever I fear for those who are going to loose treatment because they are perceived to be in a particular group , in my case I was treated as a mental health patient rather than acknowledging the arthritis for many years, hence the damage to my joints. Pain does not always reflect the magnitude of damage in the joints or muscles. Many pain causers are not always detectable on x-ray or scan. It does seem from this link that we have come full circle back to the old days of take an aspirin and buy it yourself. Some pain is so severe we cannot stand, walk or bend. Physio has become a private thing you pay for yourself too, or DIY it at home. I agree with the theory that drugs are not always the only solution but to stop all pain help sounds a bit much. Beware its not just pain treatment recently, I have found my inhalers being questioned or changed along with many others, where will it all end I have agreed to opioid reduction as my pain is lesser now my knee is mending but it does not mean I have no pain. In fact I do still have some discomfort in my leg that was operated on to replace the knee. Due to the damage caused by delays or poor treatment I am left with a permanent bend and swelling of the knee with no hope of my joint ever being normal again or its movements. Of course the pain relief may have masked a condition that was never investigated. This link will cause some frayed minds I think. Take care maybe we are comprehending it wrongly.

For people interested in opposing these changes, I have found a petition, which began as a petition to stop these changes occurring, and now is wanting to reverse the changes: change.org/p/national-insti...

Jinnty89 profile image
Jinnty89 in reply to stampede187

Hello, I have signed the petition, but do you know if anyone has fought their gp, hospital, or health board on this matter and won? Both my son and I are getting took off our pain medication, even though We have a confirmed diagnosis. I have looked at as many places that deal with disability, to see if anyone else has been able to stop or fight against the reductions of our lifeline. We are ALL individuals, not numbers or statistics, and to be lumped together is totally wrong. Thank you and stay safe.

BigYin81 profile image

As far as I’m aware this is only recommendations for England and doesn’t cover Scotland (not sure about Wales etc).

Stampede187.Hermes 123. I am hoping you have your facts as a long term pain sufferer, this would be welcome to get some priority. All of the first of which I have had over the years to no effect.

I have now been waiting since January 9th last year, after passing through several levels for treatment all help to no avail, arrived at senior level access given verdict they could help me, but due to two previous appointments cancel, due to unable to help due to my needs. then Covic put a spanner in the works due to timing ending in yet another cancellation. Last week I contacted my G.P. to see if pain clinics where re-opened he said they were, look up my file and told me he had receive a letter in November from the Consultant I had seen beginning

of March, one recommendation was to put me on a slow release opioid drug which I am now taking, still no news as to when I can get my injections for disc 1.2&3. Hermes123.

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