17 August 2018 (Last updated: 17 Aug 2018 12:21)
Complex regional pain syndrome (CRPS) is a very severe and unusual disorder of the body, most commonly affecting a hand or a foot. It can be devastating, causing such intense pain that some patients ask to have the affected limb amputated. Yet because of the complexity and rarity of the condition, it is not particularly well understood among healthcare professionals. People with CRPS often experience delays in getting treatment, since it may be confused with other sources of pain. We need to raise awareness across healthcare disciplines to ensure early diagnosis and treatment.
We don’t know exactly what causes CRPS, though it usually develops in an arm or a leg after an injury. The most common triggers are fractures, soft tissue injuries (such as sprains, nerve injuries or burns), limb immobilisation (such as being in a cast), and surgery. Estimates suggest that approximately 16,000 people in the UK are affected by CRPS, though it is difficult to establish exact figures.
Long after the original injury has healed, the patient is left with symptoms in the arm or leg. Most commonly there is pain, often severe, that may have unusual qualities, frequently described as burning, stabbing or stinging, with tingling and numbness. The pain may be out of proportion to the original injury and often extends beyond the zone of the injury itself. The limb becomes oversensitive to touch, with clothes or even air on the skin feeling extremely painful.
Sometimes even a loud noise may increase the pain. People may also experience an altered perception of their body part, feeling that the affected hand is a different size to the other, or does not belong to them. The limb is often swollen and the joints can become very stiff, often irreversibly. The skin may become waxy, or hairy, and the control of temperature and sweating in the limb is altered; for example, the affected hand may start sweating when it is not hot.
Early diagnosis and treatment is vital to try and turn the condition around quickly, and can help avoid long-term loss of limb function. A delayed diagnosis can have major psychological, social and economic implications, as the sufferer struggles to live with undiagnosed chronic pain.
There is no instant or guaranteed cure for CRPS, and due to the complex nature of the condition, a number of different healthcare professionals are involved in providing patient care. To mention a few, doctors who specialize in pain management may help to get the patient’s pain under control. This will enable the patient to then work with physiotherapists and occupational therapists to mobilise stiff joints, massage soft tissues, reduce swelling and restore function in the limb. The patient may need support from psychologists or counsellors to help them understand and cope with their condition and sometimes to recover from the stigma felt if family, friends or medical professionals doubted their symptoms were real. A whole host of other medical specialities may be involved in the diagnosis of CRPS, as patients present through their GP, the Emergency Department, rheumatology or orthopaedic clinics.
Occasionally, surgeons may be able to help and as the hand is the commonest site of CRPS, Hand Surgeons play a particularly important role. As specialists in the management of disorders of the hand, Hand Surgeons are often involved in the diagnosis of CRPS, initiate expedient treatment, and in a few cases, perform surgical procedures to release nerves or reduce joint contractures.
To help enhance understanding across a wide range of disciplines, a new CRPS guideline was published last month by the Royal College of Physicians in partnership with 28 medical organisations. The guideline aims to help ensure faster diagnosis, better treatment and more co-ordinated management of the condition. It provides advice on support for patients in a wide variety of clinical settings, including GP practice, physiotherapy and occupational therapy, surgical practice, emergency medicine and long-term care.
As one of the contributors to the guideline, I appreciate the challenges around identifying and addressing CRPS, particularly for overstretched healthcare staff. For example, CRPS often presents in fracture clinics, which tend to be extremely busy and often deal with hundreds of patients each day. Fracture clinics are routinely full of patients with painful and swollen, injured limbs, so trying to recognize the rare individual that has CRPS can be very difficult. To assist healthcare professionals in these kinds of settings, the new guideline includes a diagnostic checklist and recommended treatment pathway; having these easily visible in the clinic will optimise early diagnosis and prompt treatment of patients with CRPS.
With the right treatment, most people with CRPS will recover, either fully or partially. At the other end of spectrum are a small number of patients who are left with chronic pain and disability. Research is underway to find out more about how it is caused, but in the meantime we must do all we can to ensure early diagnosis and treatment. Those suffering from this awful condition will benefit hugely from enhanced awareness among healthcare professionals across a wide range of disciplines.
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