One of the daily miracles I celebrate since healing from Parkinson’s Disease is waking up pain-free every day. Haola! Not only that, but in the evening I can sleep on my side again, either side- I am no longer paralyzed by painfully stiff shoulder blades. This morning I remembered another cause for gratitude- doing fine motor work without stiffness, clumsiness, or pain. Today is my grandson, Alex’s, fourth birthday. I was able to wrap his presents neatly and precisely, using tape and wrapping paper. For many years, long prior to my diagnosis, I had switched over to using gift bags- the only way any gift from me could appear presentable-just ask my friends. My godchild’s mom used to secretly re-wrap my gifts before giving them to her daughter!
The reason the topic of pain comes up is that last week I was reminded of what it feels like to be told there is no pain with Parkinson’s Disease. Tuesday was my first neurology visit in two years. The last time I had been seen and declared “symptom free” I was told to return in one year if there were issues, or in two years if I remained symptom-free. So I made my return visit and was DISMISSED from the neurology department- a wonderful event! Since the neurologist I had seen two years prior had moved to a different office, I was seen by someone new. Her thorough examination was the one that dismissed me. She was very interested in my case and in reviewing my diagnosis. I went over my original long list of presenting symptoms, and we were in agreement with all, except that she, like her previous colleague, insisted that there was no pain with PD. Back in the spring of 2009 when I was seen by the predecessor, I had complained of pain, fatigue, and having arms and legs that felt heavy, like they were weighted down with sandbags. He insisted that there was no pain with Parkinson’s, but that often depression occurred, which could include sensations of physical pain. So I was referred by him to the psychiatrist.
How did I feel about all this? Like it was adding insult to injury. However, my life was becoming so compromised that I told myself to jump through any hoop if it would point in the direction of possible relief. So in June of 2009 I was seen by a psychiatrist. I told him I didn’t think I was depressed, because depressed people don’t want to do much of anything. I, on the other hand, wanted to do everything, and was becoming increasingly frustrated that I couldn’t. He listened, asked questions, administered what I believe was Beck’s Depression Inventory. His conclusion was that I was not depressed, but experiencing pain, fatigue, and difficulty with movement.
On the one hand, I was validated. On the other hand, I was almost disappointed. If it had been depression, as predicted, then maybe, as predicted, a pill could have helped. My shrinking life was continuing to contract, along with what felt like my muscles. Fortunately for me, it was two days later that I was first introduced to Wisdom Healing Qigong and began to experience immediately both hope and relief.
That was the start of my return to health and freedom from PD. Since then, in recent years, I have spoken to many groups about my healing. I have established a practice as a wellness coach and consultant, and have a client and reader base composed majorly of people with Parkinson’s and/or their families or caregivers. Not all complain of pain, but many do. After a recent speaking engagement , I was approached by a gentleman who thanked me for addressing the pain that can accompany this condition. He, too, had been quoted the party line of “no pain with PD.” So when I returned from my neurology visit the other day, I decided to do a little research around pain and Parkinson’s.
The Cleveland Clinic addresses pain and Parkinson’s with Central Pain Syndrome, defined as: “… a neurological condition caused by damage to or dysfunction of the central nervous system which includes the brain, brainstem, and spinal cord. This syndrome can be caused by stroke, MS, tumors, epilepsy, brain or spinal cord trauma or Parkinson’s Disease…”
The article goes on to describe the possible locations,varieties, intensities, and durations of pain- and it’s not pretty. NIDS, The National Institute of Nervous Disorders and Stroke, uses the exact same definition for Central Pain Syndrome, including Parkinson’s in the list of painful contributing conditions.
I feel like I opened up the closet and uncovered the Bogeyman whom I was told didn’t exist: Central Pain Syndrome. So there you have it. Yes, Virginia, there can be pain with Parkinson’s Disease, and I hope those who have been told otherwise find this information helpful. Feeling pain is painful enough. It may lessen to anxiety to learn it isn’t necessarily imagined.
Beyond what I have written today, it would be great to get a dialogue going on pain and PD. You are invited to share related comments or experiences here. Thanks, and see you soon…
I will be hosting The Sunday Connections internet radio show this Sunday at 2 pm and invite you to join in there as well. We can continue this dialogue and more. It’s a valuable forum for experience and expertise. Go to: www.sunday.parkinsonsrecovery.com. or call 877 526 4646 to sign up. There is a $5.00/month fee (1.25 per show) fee to call in live and participate and ask questions. Access to the chat room and recordings is continually available and gratis.