Drug free help with pain
Although there is limited scientific evidence to support other methods used to treat the pain of Paget’s disease, some may find the following helpful. Always ensure that any therapist involved in your care is appropriately trained and registered and seek advice from your GP in the first instance.
Physiotherapy
Physiotherapists help people through movement and exercise, manual therapy, education and advice. Your GP can refer you to a physiotherapist.
Walking aids
There are many different walking aids, and it is important to seek advice from a physiotherapist or an occupational therapist. If you use a walking stick, for instance, it is usually held on the opposite side to the affected leg and it is important to have the stick at the correct height to achieve adequate support.
Specialised footwear
The orthotics department of your hospital may be able to help. They can, for example, provide specialised footwear to correct an abnormal gait (manner of walking) caused by misshapen bone.
Transcutaneous electrical nerve stimulation (TENS)
The use of a TENS machine involves stimulation of the nerves by low-level electrical impulses. Small electrodes are placed onto the skin near the painful area and then connected to a small battery-operated stimulator. It does not hurt, but may tingle. The electrical impulses can reduce the pain signals going to the spinal cord and brain, which may help relieve pain and relax muscles. They may also stimulate the production of endorphins, which are the body’s natural painkillers. TENS must not be used by anyone who has a pacemaker or by women in the early stages of pregnancy.
Heat and cold packs
Whilst there is no evidence that heat and cold therapy helps with pain specifically from Paget’s disease, it is often recommended to help relieve aching in muscles and joints. Heat promotes blood flow which may help sore muscles and tissues to heal. It may also help block some of the pain signals going to the brain. Apply warmth to the painful area for up to 20 minutes, using either a covered hot water bottle, pads or wheat bags that can be heated in a microwave. You could also try a warm bath or buy special heat products such creams, gels and patches. Cold treatment reduces inflammation by decreasing blood flow. Try a covered bottle filled with cold water, a pad cooled in your freezer or reusable ice gel packs from your chemist. Only apply for up to 15 minutes at a time to avoid skin damage. You can reapply them every few hours. Do not use cold packs if you have poor circulation or sensation. Alternating heat and cold may help reduce exercise-induced muscle pain, as it will greatly increase blood flow to the injury site.Never use extreme heat or cold and never use heat or cold on any area for more than 15 to 20 minutes.
Massage
Some find that massage helps. Having a massage to an area of the body that is not painful, such as a hand or foot massage, can be relaxing.
Acupuncture
Acupuncture involves the stimulation of points on the body using a variety of techniques, such as penetrating the skin with needles that are then manipulated manually or by electrical stimulation. There has not been any rigorous assessment of the use of acupuncture for pain associated with Paget’s disease.
Complementary and alternative therapies
There are many complementary and alternative therapies available. There is no evidence to show that any are effective in treating the pain of Paget’s disease. Complementary therapies often do not follow generally accepted medical methods and may not have a scientific explanation for their use. It can also be difficult to separate actual direct benefit from a placebo effect, which is a psychological response where people feel better because they have received a treatment, and not because the treatment itself has specifically improved their condition. If you are considering trying any therapy, discuss it with your GP first.
Cognitive Behavioural Therapy
Cognitive Behavioural Therapy (CBT) can help you cope with your situation and involves either working with a therapist, who will help you challenge unhelpful thoughts and behaviour, or completing a course online. CBT teaches techniques to change your attitude, overcome your anxieties about pain and successfully change your behaviour to help you feel better. Your GP can refer you for this.
What about diet?
There is no evidence to suggest that special diets or supplements can help chronic pain. Maintaining a healthy weight and a healthy diet is important for overall health. Being overweight puts extra strain on joints.
Don’t allow pain to control you
Everyone perceives and subsequently copes with pain differently, but the most important thing is to try and control the pain rather than letting it control you. Here are some suggestions -
Pace daily activities
Pacing, in short, is taking breaks throughout the day before they are needed. Pacing an activity can enable you to carry out activities, without causing extra pain. It helps prevent you from having bouts of over or under activity. The amount of activity you do is often based on how you feel. When you have a good day, you find that you want to make the most of this and get extra tasks done. This can often lead to overdoing it and feeling much worse later in the day or the following day. In summary, do not overdo things on the days you feel well, nor rest too much and lose fitness.
Stay positive
Pain can make you tired, anxious and depressed. This can make the pain worse. Staying positive can really help.
Distract yourself
The amount of time you spend consciously thinking about pain will influence how much pain you feel. Try to focus your attention on something else so the pain is not the only thing on your mind. Try doing something you really enjoy and if a certain hobby is no longer possible, perhaps due to restricted mobility, why not discover a new one?
Listen to music
Whilst the relevance of music for pain relief in clinical practice is unclear, there have been some positive effects shown in the use of music for pain reduction. Choose music that really engages and distracts you.
Exercise
Activities such as walking, swimming and exercise classes, can improve or maintain your overall fitness and quality of life. Your doctor or physiotherapist can advise you on the different types of exercise and can explain how to contact local services. Find an exercise routine that suits you – what works for some people may not work for you. You should start slowly with any exercise routine and gradually increase it over time. With any exercise routine, your pain will not usually improve straight away, but if you keep exercising regularly, you may start to see improvements in both your pain and many other parts of your life and health.
Relax
Trying to relax is a crucial part of easing pain because muscle tension, caused by worrying about your condition, can make things worse. Practising relaxation techniques regularly can help to reduce persistent pain. Relaxation techniques can enable you to deal with pain, as the tension in your body is released. There are many types of relaxation techniques. Most combine breathing more deeply with relaxing the muscles. Relaxation is a skill that needs to be acquired and so gets better with practice. Various forms of exercise classes can help to improve breathing and relaxation.
Further information
There are more ideas to help with the pain of Paget's Disease in our Booklet Paget's Disease and Pain, which can be found under resources and is included in our membership pack.
Pain research
The Paget’s Association funds and supports research into pain, such as the Pain in Paget’s study, which aimed to achieve a greater understanding of the causes of pain in Paget’s disease.