Burning Nights CRPS Support is a UK national charity dedicated to raising awareness of Complex Regional Pain Syndrome (CRPS)
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NICE publishes new guidelines on the treatment of chronic pain

2021-04-07

NICE publishes new guidelines on the treatment of chronic pain

The UK’s National Institute for Health and Care Excellence (NICE) released new guidelines on how to treat patients suffering from chronic pain on April 7th. In a major shift, the NICE now recommends that doctors prescribe exercise, psychological therapy and acupuncture rather than medicines. The NICE advises doctors not to start patients on paracetamol, non-steroidal anti-inflammatory drugs, benzodiazepines or opioids because it says there is insufficient evidence to suggest that these drugs actually help and warns that they could cause addiction. The NICE says antidepressants should only be given to chronic pain sufferers aged 18 or over after a comprehensive discussion about the associated benefits and risks.

We know that Complex Regional Pain Syndrome (CRPS) sufferers may be worried about how this affects them but it’s important to note that if you’re already taking medication, your medication won’t automatically be withdrawn. However, under the new recommendations, you should expect to have a conversation with your pain specialist, consultant and/or your GP. They might recommend withdrawing or tapering your medication, or suggest alternative treatments. But the NICE also says you and your doctor could decide that you should keep taking your medication if it alleviates your symptoms, the dose is safe and there is little risk of harm. It’s worth remembering that the guidelines also say doctors should decide on treatments on a case-by-case basis and that patients should be involved in decisions on their care.

“Don’t panic. Don’t read the news headlines – the headlines are not the full story,” says Victoria Abbott-Fleming, founder and chair of Burning Nights CRPS support. “If you’re already taking medication, don’t stop taking it without contacting your doctor. Remember these guidelines are just guidelines – they’re not definitive and they’re not set in stone.”

We know that the 15,000 people diagnosed with CRPS in the UK each year only have one thing in common: the fact that they live with severe pain. There is no cure, let alone a one-size-fits-all treatment for this debilitating condition. And that’s why it’s important to fight for any treatment that helps you to cope.

Victoria, who has been suffering with CRPS for 18 years, says: “If you are finding success in managing your pain with medication and you are asked to go for a review, please tell the doctor the success you are getting from your medication. A review doesn’t mean they will simply take away your medication.”

She says: “As a charity, we find that the NICE guidelines do not offer sufficient choice for treatment for patients. Unfortunately, they also don’t appear to offer a multidisciplinary environment which has been recognized as crucial for CRPS patients. We are extremely disappointed by this. We are concerned that patients’ treatments may be in jeopardy and at this time we are uncertain as to how these guidelines will be interpreted by medics throughout the UK.”

“We also feel that there should have been separate guidelines for healthcare professionals and patients and their caregivers because the language and terminology within the guidelines may cause some confusion for patients,” Victoria adds.

Victoria urges anyone who thinks they might have CRPS to push for a diagnosis. As CRPS is a rare disease, many GPs have little or no experience in dealing with it so ask to be referred to a pain clinic or pain specialist to get a formal diagnosis. That might open up a wider range of treatments to you because while the NICE guidelines refer to CRPS as a chronic primary pain condition (an illness where there is no clear cause or where the agony a patient suffers is disproportionate to the original injury), CRPS can also be classed as neuropathic pain (caused by damage to or incorrect functioning of the nervous system). It should be pointed out that the NICE guidelines say CRPS patients would still have access to gabapentinoids – an antiepileptic drug sometimes used to alleviate some of the symptoms of CRPS – plus local anaesthetics if they are part of clinical trials.

About the Author
Burning Nights CRPS Support is a UK charity working to improve life for all those affected by Complex Regional Pain Syndrome (CRPS)
  1. Anne

    I’ve had CRPS for 13 years as a result of a break in my right arm. I had to pay privately to get a diagnosis, because there was an unacceptable waiting list of 6 months of hell before I could be seen by an NHS doctor.
    3 years after getting CRPS I caught a really bad flu which causes a massive flare up and spread in my pain. More hell. The arrival of Covid terrified me. But now having had 2 vaccinations I feel much more reassured.
    In 2017 my dentist Jamie Newlands tragically committed suicide. He was 39 years old. He was known as the dentist to the stars and Trainspotting actor Robert Carlyle was a patient. I knew Jamie as a graduate and watched and chatted to him as he build his massive dental practice in Glasgow.
    He injured his right wrist during football. Off work with pain. Doctors could not diagnose what was wrong. When chatting to his working partner about his symptoms I suggested he had CRPS. Much later, doctors finally diagnosed it was CRPS. Why so long for diagnosis? I wanted to speak to Jamie to give him hope. It is devastating what has happened to him.
    Things have improved in the NHS but clearly not nearly enough. I appreciate how frightening it is for so many of you to hear about changes in the NICE guidelines in the news. Communication with patients first, would have been more reassuring and an offer of multidisciplinary support, which does not appear to be the case.
    I would like to try to offer a little hope. I understand your pain, despair, isolation, anger and tears. Believe me I do. I’m 69 years old, and at the moment, able to cope better. I have booked my next trip, snorkelling with sperm whales in Dominica. In the depths of my despair I never, ever dreamed that would be possible. I hope NHS offers everyone better support and that you all can find some peace and hope.
    I would like to give Victoria a big massive hug and thanks for all the pain and suffering that she has been through and for the support she provides to others. She is an amazing, beautiful woman.

  2. cinziapowell17

    I have been in touch with my GP because I was worried that my GP would just take away my medication. I have a butrans patch and oramorph. I can’t take gabapentin due to horrible side effects and almost wanting to kill myself because the side effects were that awful.
    My GP told me that it was her under standing that this was for newly dignoised pain that did not have a cause. She told me that I had a long term condition that needed to be managed.
    She told me that it would be unethical for her to remove from my current medication regime, as it works well for me. She also said that if she sent me for other treatments, within a few months i would have to totally give up work and the very pleasures that I have because of my CRPS. She told she would have made me even less mobile than I am already.
    This actually scares the hell out of me because it sounds like NICE have not got a clue what it is like to live with the condition. The most painful condition on earth and the want us to have alternative treatment. I would like to see a DR try to come near my leg with a acupuncture needle…I am pretty sure that the DR would come off worse as trying to stick needles into my affected limb would not be pleasant for either of us.

    These new guidelines are not good, and I can only hope that GP’s around the country will actually look at the patient holistically.

    • Victoria Abbott-Fleming

      Hello cinziapowell17,
      Thank you for your message. Your GP is correct in that the NICE guidelines regarding medication are that they won’t be starting new patients on any medication except for antidepressants. Those who already take medication, may have a review with their doctor and a discussion on the effects of taking the medication, assessing any risks and finding any alternatives.
      We completely understand your fear and these guidelines have caused a good many chronic pain patients to have the same fear reaction. At least your GP is still continuing with your medicaion, that is a good thing.
      Many thanks
      Victoria and team

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