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A MyParkinsonsTeam Member asked a question 💭
Aiken, SC

SO, my question is how many of you suffer central pain? How many of you have pain in general linked to your Parkinson's? Initially I had subtle symptoms and rather widespread prior to 2017. I did have a great deal of pain in my feet and my hands. I still walked several miles per day. We moved at the end of 2017 and decided to quit smoking...for our heath. Little did I know I unleashed the hounds of hell. Pain ruled my life and I went doctor to doctor. Then I started falling...a lot. There were… read more

October 14, 2023
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Answer Summary

Members rallied around the question of whether pain is a real part of Parkinson's disease, with many sharing frustration over doctors who... Read more

Members rallied around the question of whether pain is a real part of Parkinson's disease, with many sharing frustration over doctors who dismissed or minimized their suffering. Several members described chronic pain in their fingers, toes, feet, and joints, and shared what has helped them, including Gabapentin, Lyrica, epidural injections through pain management specialists, and daily movement like walking and Pilates. A recurring theme was the importance of self-advocacy, seeking specialists like movement disorder neurologists, and never settling for a doctor who does not take your symptoms seriously.

A MyParkinsonsTeam Member

This is the very reason I am in the process of going to a new doctor. I went to a Neurologist and he sent me to the Cleveland Clinic to see a Movement Neurologist. Never settle with a GP when you are having major issues. Be aggressive when it comes to your health!

October 14, 2023
A MyParkinsonsTeam Member

Melissa, I'm so sorry you are experiencing so much pain but so proud of you for advocating for yourself. It makes me made for you and all of us as we try to navigate a difficult disease with an inadequate road map. Unfortunately, your experience with your doc is not rare but your persistence is outstanding. Keep this experience in mind as you go forward. The more knowledgeable and prepared you are, the better you may manage your PD symptoms. I pray that as your anger dies down that empowerment will move in. There is so much useful info available to us. Please feel free to search for answers but also ask me or someone for help finding info on reputable sources on the internet.
Please take a moment from anger and give yourself a moment of joy today and every day.
Maria

October 14, 2023
A MyParkinsonsTeam Member

🥰 I love your answer! That request for pain management was what set off the conversation 😳 I was livid. I mean n1o disrespect to my male friends but truth is when a woman goes to the doctor and says she has pain, their eyes roll and their ears close.I literally walked around for 3 months with a completely torn rotator cuff and all I got was 'well you have had a few birthdays '. I was 61. I had to demand an mri. When they saw it my surgery was scheduled 2 days later 😤

October 15, 2023
A MyParkinsonsTeam Member

Your doctor's response was both improper and uneducated.
Yes Parkinson's can come with pain that ranges from mild to debilitating. It can be temporary or permanent.
On top of that, most Parkinson's patients are already senior citizens before diagnosis and as such will typically have various arthritic issues, stenosis, neuropathy and musculoskeletal issues.
In my opinion, his line of questioning should only be directed towards determining the type, level, frequency of pain and providing some type of treatment or references to someone more capable of handling the issues like a Pain Management specialist.
I go to pain management once a month and have had epidural shots in my back, hips, neck and shoulders. I take two 150 mg Lyrica a day and my pain level is manageable. When it flair up, I get another shot in that area, they last about four months each time. Don't live in pain, find another doctor who can isolate and treat the issues properly.

October 15, 2023
A MyParkinsonsTeam Member

Stretching and exercise helps me but I awake most mornings with pain and stiffness. I usually don't feel like exercising but it is most effective in eliminating my pain.
Maria

October 14, 2023

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