Self-Management  

Managing Pain

Joint pain is a serious and debilitating symptom of AKU. Inadequate pain control may lead to limited use of the affected joint, reducing its range of movement.

Physical and occupational therapy are important to maintain muscle strength and flexibility. A programme of swimming or hydrotherapy is ideal since this puts less strain on the joints. Avoiding manual labour or high impact sports, which can stress the spine and large joints, may help delay the progression of osteoarthritis.

Pete Moore’s Pain Toolkit is a useful resource for managing pain effectively. Pete used his own experience of living with chronic pain to develop the toolkit, providing useful tips and advice for managing pain, with a focus on accepting limitations, making adjustments and setting goals and targets. The Pain Toolkit is available to download for free  and is translated into several languages. 

Regular use of anti-inflammatory drugs (NSAID), in combination with painkillers, can help manage alkaptonuria. Joint replacement surgery is also used as a form of pain relief when joints become too damaged. Some AKU patients may also require surgery for kidney, bladder or prostate stones.

Patients who attend the National AKU Centre (NAC) receive one-to-one appointments with a doctor specialising in pain management. Following an assessment at NAC clinics, patients may receive pain relief as required.

Diet

While there are some reports that a low-protein diet can delay joint problems, there have been no formal clinical trials to prove this. Protein rich foods are a valuable source of many vitamins and minerals in addition, so lowering protein brings its own risks. It is for this reason that our AKU dietitian, Shirley Judd recommends controlling protein intake to 1g per Kg of body weight. This provides the nutrients needed for health and is enough to maintain muscle mass in adults under 65 years. Children should not limit their protein intake, as this is essential for growth and development.

Some alkaptonuria patients choose to take vitamin C as an anti-oxidant. Research has shown no proven effect of vitamin C in humans. Taking glucosamine and chondroitin, promoted for joint health is also proving difficult to justify, with recent studies showing it is of no more benefit than a placebo.

Patients who attend the National AKU Centre are instructed to follow a controlled protein diet because nitisinone treatment raises blood tyrosine levels. Tyrosine is an amino acid found in protein foods from both animal and vegetable sources. Patients individual protein requirements are calculated, this controlled protein intake helps reduce the risk of any potential side effects from a high tyrosine. Everyone's diet is then carefully monitored as part of the annual review. 2

Exercise


Staying active with light exercise can help slow the progression of osteoarthritis, as it keeps joints healthier. Contact sports, which put strain on the joints, should be avoided. Many patients feel they benefit from swimming and hydrotherapy, reporting reduced joint pain and stiffness. Physiotherapy can also be good for AKU patients.

Our Patient Support Manager, Lesley is a trained move it or lose it instructor. Lesley runs chair-based exercise classes at our patient workshops, demonstrating light exercises that patients can do at home to maintain strength and keep joints supple. She is very happy to arrange individual sessions with patients at their home if necessary.

Our AKU physios have created a video with some simple exercises to support patients living with AKU:


To contact Lesley, email [email protected]



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