While not everyone diagnosed with Parkinson’s disease experiences pain, research indicates that about 60 percent of people with the condition do face this symptom.
Pain can be caused by a number of factors associated with Parkinson’s, including:
It’s important to understand the different types of pain associated with Parkinson’s disease, as well as what can be done for pain management. As always, talk to your health care provider or neurologist about the best ways to manage any pain you experience with Parkinson’s.
MyParkinsonsTeam members have described the pain they’ve experienced with Parkinson’s in a variety of ways. This pain can be chronic pain (persistent and ongoing pain) or acute pain (pain that comes and goes).
The sciatic nerve starts in the lower back, runs through the buttocks, and continues down the leg. Many members describe experiencing pain associated with the sciatic nerve as a result of their Parkinson’s diagnosis.
One wrote, “I have severe lower back pain and excruciating nerve pain extending down both legs, particularly at night. When I was finally referred to a pain consultant, she described it as the degeneration of my lower spine combined with the rigidity of Parkinson’s creating a trapped nerve.”
Another member said their sciatic pain seems to coincide with muscle contractions: “I’m associating my sciatic nerve pain with my dystonia because I only experience it in the mornings after a rough night’s sleep.” Others have found their sciatic pain severe enough to interfere with daily life. “I’ve had sciatica pain really badly, to the point where I can’t stand up on my right leg or walk,” a member wrote. “I’m hoping it gets better.”
People diagnosed with Parkinson’s may also experience pain in the nerves that run through the neck and shoulders. As one member asked, “Does anyone else have severe pain in their neck and shoulders? I am dying here and hurting so bad.” Another shared the diagnosis they received, writing, “I am dealing with an inflamed nerve in my shoulder blade. I didn’t get much sleep last night with pain shooting down my arm.”
Many people describe Parkinson’s-related pain as a burning sensation. “Lately, I have had bad burning feet at night,” wrote one member. Another explained that they are “having problems with burning/aching shoulders.” A member shared that they experience a burning sensation when touching their skin, while another stated that they “often have burning sensations in my arms and legs.”
MyParkinsonsTeam members have described different types of pain caused by Parkinson’s.
For some, dystonia — involuntary muscle cramping or tightening — causes soreness and pain. In response to another member’s question about their husband’s foot pain, one member wrote, “If his foot is trying to curl or clench due to Parkinson’s, that could cause pain.”
Some members find that Parkinson’s-related pain exacerbates other symptoms. As one member explained, “When the pain is severe in an area, my head starts jumping all around, and my shoulders flare up. I look like I am having a seizure, and it lasts anywhere from 10 or 12 to 18 hours.”
Many options may help treat pain caused by Parkinson’s disease. Remember that this pain can affect people differently. As a result, managing or treating Parkinson’s pain can take many different forms.
Treating Parkinson’s disease itself may help alleviate pain. Dopamine agonists like levodopa and other dopaminergic medications or therapies may help. Other people find that medications specifically designed to target nerve function, like gabapentin and amantadine, also help with pain.
“Gabapentin worked when I had neck and shoulder pain,” shared one member. “It helped with the shooting nerve pain.” Another wrote, “When I had neck and shoulder pain, I took gabapentin.” Gabapentin can help with pain in other parts of the body as well. As one member explained, “My husband used gabapentin to calm nerve pain in his feet because he was having a lot of pain. It helps.”
Others find amantadine to be helpful in managing their pain. One member wrote that they “take a prescription called amantadine (Gocovri). This is working well at the moment.”
Physical therapy is another way to help you manage pain associated with Parkinson’s. A physical therapist may recommend different stretches and exercises, as well as at-home therapies like applying heat or cold packs when pain hits.
Several MyParkinsonsTeam members have found pain relief through physical therapy. One member noted that consistency was key in allowing their loved one to manage pain: “Physical therapy has helped ease the pain, as long as he does the exercises frequently.”
Others find that at-home therapies recommended by physical therapists help them manage pain as much as the therapy itself. One member shared a tip that their physical therapist gave them: “I used to take ice packs to bed with me. The cold pack seemed to numb my legs so I could get to sleep.”
MyParkinsonsTeam is the social network designed specifically for those living with Parkinson’s and their loved ones. Here, you can ask questions, join conversations, and share your journey with Parkinson’s.
Have you experienced pain with Parkinson’s? How have you managed it? Share your experience and tips in the comments below or by posting on MyParkinsonsTeam.