Finding Words to Describe Parkinson’s Pain

Finding Words to Describe Parkinson’s Pain

Parkinson’s disease (PD) pain is unique, so finding words to describe it is difficult. Not all those with a diagnosis experience pain. But for some, like me, pain is the major, disabling symptom. It is important to find words that describe the pain experience as clearly as possible. There is no “grin and bear it,” nor is this “a pity party.” Instead, this is a search for accurate articulation of the pain experience to help maintain quality of life.

Pain may be an early symptom of PD, according to a study presented at the 2018 World Congress on Parkinson’s Disease and Related Disorders titled “Pain: A marker of prodromal Parkinsons disease?” The American Parkinson Disease Association published research that supports the connection of pain with Parkinson’s, suggesting that if the pain is relieved with dopaminergic medication and the patient has a pattern of painful sensations that correlate to “off” episodes, more credence can be given to the idea that the pain is PD-related.

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PD pain can resemble pain from other disease processes, especially as the patient ages and faces a multitude of other pain-causing conditions such as arthritis, spine degeneration, poor muscular conditioning, and such. In my case, PD pain is distinguished by the following:

  • The progression of body pain correlated with the progression of the disease over time.
  • Levodopa, a dopaminergic therapy, successfully reduces the pain.
  • The pain is worse during “off” periods.

My PD pain also has a particular characteristic: stinging (sometimes knife-jabbing), irritating tingling, burning, and muscle heaviness with increased pain on movement. This pain happens over large regions of the body and varies in severity. At its worst, it can last several days and reach level 7, inducing spontaneous tears.

PD with episodic chronic pain is disabling in several ways. First, high levels of pain obstruct clear thinking. Second, high levels of pain induce the fight-or-flight response, which interferes with emotion management. Third, the amount of energy necessary to manage it is very tiring (even more so in the face of the deep fatigue associated with PD). Chronic PD pain entails much more than body symptoms.

Parkinson’s pain is a total experience that touches thoughts, feelings, and relationships. Even when it’s a struggle, finding the words to describe pain experiences is imperative to maintaining quality of life in the face of a difficult diagnosis. Finding the right words helps one communicate the pain experience to care providers, family, and friends — a network of relationships that help form the foundation for quality of life. By communicating the pain, those close to me are more understanding of why I act the way I do, which helps to maintain those relationships.

Over the years, I have watched my PD progression. I have taken the warrior stance to do all I can to slow the progression. My hardest battle is with the total experience of chronic PD pain. Large blocks of time disappear into the fog of war. Over time, I have learned the importance of communicating about the pain daily, sometimes multiple times a day. My partner asks, “Where are you today?” I will say, “I’m at level 5,” followed by a quick mention of the most bothersome symptoms. In the past, I kept track of the pain levels throughout several months to create benchmarks. This is all part of finding the words to describe the Parkinson’s pain experience.

I have been a “communicator” most of my life, but it remains a struggle to find words that describe the unique character of PD pain. If you experience PD pain, please share your descriptors in the comments. Together we may find a common dialogue that will help others.

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Note: Parkinson’s News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Parkinson’s News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to Parkinson’s disease.

13 comments

    • ROSALIE MAUD says:

      That description fits PD very well. The “Strangulation” to me is the extra mucus that collects, making me sound constantly nasal as if I have a cold. I try to cough, but to no avail.. My whole body does sometimes feel like a clenched fist, but not only when interacting with others. I have toes that are constantly curled under and make me walk like a “Weeble” but unlike Weebles I can, and frequently do fall down. This makes my whole body tighten up. Finally, “rigor mortis without the benefit of death” is getting more real, every day – my anxiety level is through the roof , and I wonder how much longer I will be able to function at all.

      • Dr. C says:

        Thanks for adding your words to the dialog. It is great to see the language diversity. I like the “Weeble” analogy. Are those toys still around?

  1. Your article is close to home for me. I experience a sensation like thousands of bees running up and down my body stinging continuously. Its so painful, I can’t stay seated, or stand or lay without moving around trying to relieve the pain. The episodes last 6-8 hours with continuous pain. The last experience was on New Year’s eve after I returned home from a party. I did not drink, take drugs, or do anything different other than talking with other guests. I was exhausted when I came home and that’s when the stinging started. I started to panic because I knew what was going to happen.

    In retrospect, I see that I was very exhausted and probably had a diminished amount of levodopa in me and was experiencing an OFF episode. At one point, I was trying to tell my husband what was going on and I used the term: “heebee jeebies.” So he googled it and found that it was a description of what heroin addicts experience in detox.
    I told the neurologist and she agreed that maybe that was a correct interpretation. I have told four different neurologists about this and they all say they never heard of it. My current neurologist suggested that it might be “akithisia” which is related to dyskinisia.
    I am so thankful that you wrote this article because I don’t feel alone and misunderstood – there are others who are experiencing something similar to me. I feel it was triggered by exhaustion and when I look back to other episodes, I see that they occurred after a lot of stimulation which might have paralled a drop in levodopa. You are correct in saying that our means of communication need to be better in order to express what we are feeling and maybe get some relief.
    I wish you all the best. Thank you for giving me the opportunity to share this.

  2. Terry Pollock says:

    I’ve had tingling, burning pain for years, mostly in my feet and legs, now in my shoulders and arms. I was a mystery to my doctors for years before I was diagnosed with Parkinson’s. I’m staying away from meds for Parkinson’s because I’m already on so many for other problems. Is this the pain that other people have?

  3. Michelle says:

    The worst part is when your doctor’s don’t believe you and don’t help you because PD “doesn’t have” severe pain.

  4. Edward Assad says:

    My pain is everyday.When I take a dose of Levo,I get increased tremor and widespread pain in my right arm from hand,wrist,raw elbow nerve and finally shoulder.After about 20 minutes it calms down and I can function for an hour and a half which diminishes with each dose until my last dose at night which I only take so I’m able to go to sleep.I wake up 3 or 4 times each night trembling and aching.My right arm feels as if someone has twisted my wrist and is trying to lift my body off the ground from the shoulder.
    I take 6 or 7 doses a day and get about 6 hours “on”.The rest of the time I’m in stages of “off” and in extreme discomfort.When it’s really bad I have to try and hold my arm still which is almost impossible.My doctor just nods when I inform him how bad it is and recommends wires coming out of my head.I’m 5 years in and see no one willing to try and help.I’ve
    been to the Mayo clinic where they said take more levo.University of Florida offered the same unreasonable solution.It’s like a bad joke and they don’t hear anything you’re telling them and offer nothing for the extreme pain and lack of any quality sleep.Makes me wish I had cancer or something that qualified me for pain or sleep aid.Not having a good nights sleep for years kind of wears on you if you know what I mean.
    What happened to the right to try some of the existing drugs that are in clinical trials and just might help?There are anti-hypertension drugs and calcium channel blockers that try to protect neurons or help break down Tau.All I hear is no,no and more no’s.
    How long can one stand this pain without giving up.I understand how this can drive you to end the pain and the unresponsive medical experts.They seem intent on driving you to a final solution.I thought they swore an oath to help not ignore.
    Good luck to all and hope some of you have a more compassionate medical community.

    • Dr. C says:

      You may have noticed that the column did not get into the cornucopia of issues surrounding pain treatment. Also I am not a medical doctor. I can say that personally pain treatment has been a problem and I never have a day/night with zero pain. The reason I write about developing a personal “rehabilitation plan” is because I HAD TO DO SOMETHING about the pain. I had to find the best way to live in order to keep the pain as low as possible. It is a warrior’s journey.

  5. William Johnson says:

    HAVE PAIN IN A LOT OF DIFFERENT PLACES. FOR INSTANCE, THE CRAMPS I GET EARLY IN THE MORNING ARE SO PAINFUL I FEEL LIKE CRYING BUT IF I GET UP AND START MOVING THEY GO AWAY. THE PAIN IN MY BACK IS ALWAYS THERE BECAUSE I HAD SURGERY A FUSION WITH HARDWARE WHICH WAS A BIG MISTAKE. NOW I AM HAVING PROBLEMS WITH MY NECK AND SHOULDER. THE THING THAT S DRIVING ME CRAZY WHICH BTW IS NOT PAINFUL IS MY FACE WHICH TIGHTENS UP ALL THE TIME

    • Dr. C says:

      It is great to see all these responses to the pain column. I hope they continue. It gives us, the readers, an opportunity to see the words people use to describe their pain, and thus helps us in our struggle to describe our own pain. Thank you all!!

  6. Gail says:

    Thank you all for sharing your ways of naming the different kinds of pain one can experience, when using a rating chart of 0-10 doesn’t capture the existential experience of parts of one’s body hurting. For me, pain can be fluid or fixed (radiates throughout my hip and thigh, sharp, piercing as if it was a bite) or smoldering like a soft burn, sindging like from a flame. Or one can image electrocution, when the pain is “off the charts.” Perhaps this is the “heebie jeebies a previous respondent discovered was associated with heroin.
    Internal tremors in one’s arms are like pulsations invisible to the eye but as if fluctuating, charging up the neuro pathways. One’s legs can feel weighted, almost leaden, if one’s meds. are ”off.”

    • Dr. C says:

      I hear what you are saying about a 1-10 chart, that it doesn’t really get at the total pain experience. I think the usefulness of the chart is when I am in sync with my care giver about what the numbers mean. When we are both on the same page then the numbers communicate well. I like that “electrocution” analogy. I also get that on real bad days. Thanks so much for adding your voice. I think the pain experience with PD is not well understood. Maybe many voices can help make a difference.

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