Pain is a common, but perhaps unexpected, non-motor symptom of Parkinson’s disease (PD). Up to 75 percent of people can experience some form of discomfort during the course of their disease. Unfortunately, this symptom is often under-recognised and therefore undertreated.
Many Potential Causes of Pain in Parkinson’s Disease
Some types of pain are due to Parkinson’s motor or non-motor symptoms, others to the underlying disease itself. Some pain or discomfort can’t be linked directly to PD but is still fairly common. A list of top causes of pain in people with Parkinson’s includes:
- Muscle stiffness: Motor symptoms, such as rigidity and slowness of movement can lead to aching and pain, which may result in decreased mobility and even more pain. This is the most common type of pain experienced by people with Parkinson’s. It comes from the muscles and bones and is usually felt as an ache around your joints, arms or legs.
- Dystonia: Dystonia is a prolonged, involuntary muscle contraction that causes an abnormal posture. It usually manifests as painful curling or bending of the toes/fingers or inversion of one foot but can occur in any area of the body. Dystonia most often arises in the morning or during “off” times, when medication is not working optimally and Parkinson’s symptoms return.
- Dyskinesia: Dyskinesia is abnormal, involuntary movement that may develop with long-term use of levodopa (in conjunction with a longer duration of disease). Dyskinesia usually occurs when Parkinson’s symptoms are otherwise controlled (i.e., during “on” times). The movements can be a writhing, wriggling or fidgeting-type motion.
- Central pain: In PD, the brain regions that process sensation and pain may not work correctly, which can result in a syndrome called “central pain.” The pain can be widespread, affecting the whole body, or focused on one area. It may be a constant burning sensation or an intermittent sharp burst of pain. In some cases, central pain can show up as abdominal pain or a feeling of reflux. The symptoms of central pain vary widely from person to person.
- Abdominal pain: The majority of people with Parkinson’s experience constipation or stomach upset at some point, many times even before diagnosis. Constipation can range from a minor nuisance to a condition that causes severe bloating and discomfort.
- Musculoskeletal pain: Typically is related to involuntary muscle rigidity or bradykinesia, which limits range of motion. Because of decreased mobility, postural changes, falls and sometimes fractures, Parkinson’s can cause muscle and bone achiness. Many people also have lower back pain and even associated sciatica (pain, tingling and numbness radiating down the back of one leg). For example, it is not uncommon for people with PD to present initially with unilateral shoulder pain (ie, frozen shoulder) for which they have undergone numerous orthopedic and pain management consultations, as well as failed injections and surgeries, before they consult with a neurologist or a movement disorder specialist and are correctly diagnosed with PD.
- Joint pain: Arthritis isn’t part of Parkinson’s per se. But both conditions are more common with aging so their pains can be difficult to differentiate. Hand, knee, hip and lower back joints often are stiffened by arthritis.
- Neuropathy: Damage to peripheral nerves (those that carry sensation to the hands and feet) can manifest as numbness, tingling or burning. This sort of neuropathy can be caused by a number of conditions, including diabetes and vitamin B deficiencies but may also be related to nerve compression that causes a twisting of the spine in a person with dystonia, or postural deformities related to PD.
- Pain in the Mouth or Jaw: Dryness of the mouth can be caused by some Parkinson’s medications (particularly anticholinergics). Speak to your GP, specialist if you have any concerns, but do not stop taking the drugs before getting professional advice. To help ease mouth pain try more frequent drinking of water to keep your mouth moist.
Pain, like most non-motor (and motor) symptoms, can fluctuate. When talking about their Parkinson’s, people who live with the disease describe good days and bad days. Physical and emotional stress, as well as lack of sleep, fatigue and depression can exacerbate pain. Pain in Parkinson’s is generally worse during “off” times (periods when PD symptoms return because medications aren’t working ideally).
Multiple Approaches to Pain Management in Parkinson’s
A few basic tenets for treating pain in Parkinson’s are to:
- Identify the source of the pain, if possible,
- Optimize control of motor symptoms,
- Incorporate exercise,
- Use non-pharmacologic methods, if helpful,
- Add pain medication as necessary.
If pain arises, discuss it with your movement disorder specialist, who can assess your Parkinson’s, evaluate for causes other than PD (even minor infections can worsen Parkinson’s symptoms and pain), and direct appropriate treatment.
If motor symptoms are not controlled, pain may not be adequately controlled either. If “off” time, dyskinesia or dystonia are contributing to or causing pain, dopamine medication adjustments are likely to be the initial strategy for pain management. Additional therapies for dystonia may include botulinum toxin (Botox) injections into the affected muscles, or oral drugs, such as muscle relaxants.
Normal ageing increases the potential to experience painful conditions such as arthritis, osteoporosis and related disorders. The co-existence of these and other medical conditions must be investigated.
Exercise to Relieve your Pain
Many different types of exercise can be beneficial for people with Parkinson’s disease (PD), including non-contact boxing, tai chi, dancing and cycling, as some examples. If you have limited mobility, you can try chair yoga or other seated exercises. Whichever exercise you choose, make sure it is something safe and enjoyable so that you can stick with it.
It’s important to pace yourself and know your personal limitations. If during or after exercise you experience extreme pain you should look at modifying your routine and choose a less intensive exercise. Even the simplest exercise, including walking your dog or just puttering around the house or garden, can help alleviate symptoms of pain.
If you need help or advise consult with a physical or occupational therapist to help design a personalised program for you.
Non-pharmacological pain treatments
Complementary therapies are treatments used alongside conventional medicine. They take a more holistic approach than conventional medicine, aiming to treat the whole person including mind, body and spirit, rather than just the symptoms. These include massage therapy, mindfulness and meditation techniques, acupuncture, and heat or cold application. These may be used on their own or in combination with medication.
For musculoskeletal and other pain, anti-inflammatories may be recommended. For severe pain, low doses of opioids may be prescribed. Opioids can cause constipation, though, so they must be used cautiously. For central or neuropathic pain, particularly when depression is present (and even when it’s not), certain antidepressants often can ease symptoms.
All up a multidisciplinary team approach for pain management may be necessary. In addition to your movement disorder specialist, providers may include physical or occupational therapists, psychiatrists and even pain management experts. Each of these practitioners targets a different aspect of the pain.
For more information on Pain with Parkinson’s watch this video from The Michael J. Fox Foundation.
Active Research into Several Aspects of Parkinson’s Pain
Researchers are working to better understand the mechanisms behind pain in Parkinson’s so that it can be more effectively addressed. They are looking for objective measurements, such as brain imaging, to diagnose and monitor pain, and to evaluate response to treatment. (Right now this can only be done subjectively, or by asking a person to rate their pain using a numerical or visual scale.) And, they’re investigating several drugs and deep brain stimulation for their potential benefits in treating Parkinson’s disease pain.
For more information on living with Parkinson’s – whether you are a carer, have Parkinson’s or a family or friend of someone with Parkinson’s.