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  • How to Describe Parkinson’s Pain

    Posted by forum-moderator on February 13, 2019 at 12:18 pm

    Columnist Dr. C says that he struggles to describe the unique nature of Parkinson’s pain, but pushes on because he thinks such descriptions are essential to maintaining his quality of life. Find out why Dr. C feels this way here.

    Can you relate to what Dr. C shares? Do you also struggle to explain to others what the pain of Parkinson’s feels like for you?

    Deleted User replied 5 years, 1 month ago 4 Members · 4 Replies
  • 4 Replies
  • laurap1359

    Member
    February 14, 2019 at 4:10 am

    My experience with PD pain was before I was diagnosed.  The only way I could explain it was that it was like a red hot dagger going through my shoulder, from front to back below my left collarbone.  I had a constant pain in  my shoulder that I would try to rub and massage away, never helping, my left arm also this dead feeling, I would say I wished I could rip my arm off, that’s how much discomfort it caused. I also had many other symptoms associated with PD, that when I finally went to the doctor I was diagnosed with PD. With medications I was put on the  pain went away and has stayed away, I’m thankful!!!!

     

     

     

     

     

     

     

     

     

     

     

     

     

     

     

     

     

     

     

     

     

     

     

     

     

    • Deleted User

      Deleted User
      February 14, 2019 at 6:23 am

      Thank you for sharing Laura.  I am glad the meds have helped your pain. It is interesting  to see how we are all suffer different symptoms. Luckily, I have no pain.

  • victoria

    Member
    February 20, 2019 at 1:18 pm

    I am new to the forum and immediately I can relate.  What an excellent topic.

    I was diagnosed in 2012.  I had significant pain then, but, was attributed to arthritis rather than PD.  I did not realize that PD could have pain associated and thought that my pain was all due to the traumatic arthritis.  I describe my pain as very sharp, knife-like, stabbing, and stinging.  I would say generally I am at a level 5-6 up to 9-10.  It radiates from the outer aspect of my foot to my knee when at the higher pain levels.  It causes my leg to dump me when walking, which concerned me as balance issues.

    I am really struggling with managing the pain.  I have ortho, neuro, and pain management specialty physicians involved.  I am on carbidopa-levadopa, gabapentin, and oxycodone.  My pain becomes worse when it comes time for my next dose with evenings being significant.  With the opioid issues today, further pain management with them is not feasible.  I am adding CBD sublingually, which does slow or stop my tremors, but have not found the magic dosage that impacts my pain.

    I think that differentiating PD pain from other conditions is a major issue as it will or does have a huge impact as to how physicians treat the patient.  So, how do we differentiate it?

     

     

    • Deleted User

      Deleted User
      February 20, 2019 at 1:24 pm

      hi Victoria

      thank you for sharing, I am sure it will help others who suffer PD pain in knowing they are not alone in what they experience.  I hope you can find a solution to ease your pain.  have you tried meditation and/or yoga?

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