Causes of Pain in Paget’s disease 

In many people, Paget’s disease affects a single bone, whereas in others, several bones may be affected. In general, pain caused directly by Paget’s disease is localised to the affected site. For example, if you have Paget’s disease in your skull, it might result in the occurrence of headaches. 

Pain in Paget’s disease may be related to what is known as ‘increased metabolic activity’ of the disease. The reason why this pain occurs isn’t entirely clear, but it is thought to be a consequence of increased bone cell activity. Such pain can respond well to treatment with a bisphosphonate, such as zoledronic acid. Many people, however, who have Paget’s disease, experience pain related to other causes, and if that is the case, it is unlikely to be helped by bisphosphonate therapy. For detailed information on treatment see our booklet, ‘Paget’s Disease – The Facts’.  

Pain can also occur because of damage to the joints next to affected bones (osteoarthritis), a break in the bone (fracture), pressure on the nerves from enlargement of the bone or as the result of deformity of the bones, which can put stress on joints and soft tissues. 

It is important to have pain, especially new or increasing pain assessed by your doctor. 

What is bone pain? 

Bone pain at a specific site is detected by specialised transmitters located on the bone’s surface, which then pass messages through the nervous system to the brain where signals are recognised as pain. Pain in Paget’s disease may be caused by increased metabolic activity. This can occur at rest or at night, but can also be provoked by weight bearing on an affected bone. 

Pain from Paget’s in the skull 

Paget’s disease of the skull can be associated with several symptoms, including headaches and a band-like tightness around the head, resulting in an unpleasant sensation. If the pain is the result of increased metabolic activity of Paget’s disease, then treatment with a bisphosphonate, such as zoledronic acid or risedronate may help the pain. People with Paget’s disease can also get headaches as the result of other causes like a migraine. If you have Paget’s disease and you experience headaches, it is important that you speak with your GP or specialist to seek advice on whether they are likely to be due to Paget’s disease or another cause. 

Back pain 

Back pain is very common. There are many causes, but in older people, it is often due to osteoarthritis affecting the joints of the spine. If osteoarthritis is the cause of the pain, it can be treated by medication. You may also find physiotherapy, acupuncture or TENS helpful, as discussed in our pain booklet, which is available to download from the members' section of our website. 

Paget’s disease can also cause back pain as the result of increased metabolic activity of the disease. If this is the case, it may be helped by therapy with a bisphosphonate such as risedronate or zoledronic acid.  

Back pain can also occur as the result of what is called spinal stenosis. This can affect people with Paget’s disease of the spine because the affected bone enlarges, and this can cause pressure on the nerves that emerge from the spinal canal. The main symptom of spinal stenosis is pain, often radiating to the buttocks or down the legs, but there may also be numbness, weakness, and a tingling sensation in the legs. Patients with severe spinal stenosis may experience difficulty walking. The diagnosis of spinal stenosis is usually made by an MRI scan. If symptoms are severe or worsening, surgical treatment may be offered to release the pressure (decompression) and give the nerves more room. Surgical treatment can sometimes involve removing sections of the bone or the bones may be fused together. 

Osteoarthritis and Paget’s disease 

Osteoarthritis is a common condition, even in people without Paget’s disease. There is evidence that people with Paget’s disease are more prone to develop osteoarthritis in joints adjacent to bones that are affected by Paget’s and the most commonly affected sites are the hip and knee. Paget’s disease is thought to predispose to osteoarthritis for two main reasons. The first is whether there is deformity of the bone. This can place abnormal stresses on the joints nearby. An example would be if a tibia becomes bowed, this can cause shortening of the leg, which can predispose to arthritis of the knee or ankle. The second reason is that the bone in Paget’s disease is denser than normal.  If there is increased density of the bone next to a joint, it results in abnormal strain being put on the cartilage (lining of the joint), causing the surface of the joint to become worn. 

Other causes of pain 

Other causes of pain related to Paget’s disease include the following:  
Pain from deformity of a bone - This is thought to be due to abnormal stresses on the surrounding tissues and stretching of the membrane surrounding the bone.
Stress fractures - These are small cracks in the bone that can occur in deformed weight-bearing bones, such as the thigh bone (femur) and shin bone (tibia). 
Fractures -These can occur as the result of a fall, causing the bone to break.  
Osteosarcoma - This is a very rare type of bone cancer that can occur in people with Paget’s disease. Please contact our Helpline if you need more information about this.