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them but it’s important to note that if you’re already taking medication, your medication won’t automatically be withdrawn.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.