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By Wifey On 2015.09.22 15:00
My husband has pain all down his side. Everything official we've read says "there's no pain with Parkinson's" although I've read anecdotal comments from others that they also have pain.

He's very frustrated by the doctor's inability to determine the cause of his pain. If he knew this was part and parcel of the disease, at least he'd have some resolution. Can any of you share your experience?


By LOHENGR1N On 2015.09.22 16:07
Hi and welcome to the forum. As far as pain is concerned yes there is pain with Parkinson's. That is well known to us patients and many in the medical field have come to recognize this also. Mostly the pain comes with dystonia a slow contracting or cramping of our muscles. There is debate as to what causes this either the base disease or medication or the combination of both. But the there is no pain with Parkinson's is antiquated. As our muscles contract it twists us compacting some parts and stretching other parts of our bodies. We can feel like we're on some medieval rack or being crammed into a ball. A close friend of mine had such severe cramping of his foot it ended up breaking a bone in his foot. I myself experience dystonia before the Sinemet starts to work and as it wears off and before the next dose is taken. On good day is when my Sinemet seems to control the dystonia and I get a couple hours relief before the dystonia hits again and then a couple hours until the MED's kick in with some relief. I hope this helps. Again welcome to the forum, it's a great resource filled with great people who will help anytime or way they can

By Trusting On 2015.09.22 23:27
Yes, my husband has a lot of pain, especially in his back and leg. His doctor sent him to a chiropractor but the chiro said he didn't think he could help him b/c the PD is changing his muscles so much causing the pain. The doctor said they can give him another med but it will make him want to sleep all the time. He doesn't want to take it yet. That is why Parkinson's patient have to keep moving to keep their muscles loose.

By RobinWilliams On 2015.09.28 17:13
My husband has a lot of back pain. The neurosurgeon wants to operate. He is in late stage so is it worth risk

By VioletV On 2015.09.28 17:16
You might try a medically trained acupuncturist. My husband's acupuncturist (who is also a licensed physician) has helped him a great deal.

one indicator -- does the pain abate when the Parkinson's medication takes effect. As for surgery, I'd confer with a movement disorders specialist. Surgery is very difficult for people with PD unless there is a clear medical need. Again, look at the Ahlskog book. It gives a lot of guidance.

By RobinWilliams On 2015.09.28 17:45
What is the AhlsKog book?

By VioletV On 2015.09.28 17:48
J. Erik Ahlskog, The Parkinson's Disease Treatment Book: Partnering with your Doctor to get the Most Out of Your Medications (2005 edition).

This is such a very helpful book, especially the new one (second edition 2015). I think every person with PD would benefit from having a copy. the first edition is now pretty inexpensive used on Amazon since there is a new edition.

The other good book, in our opinion is J. Friedman, title is something like Brain and Behavior, Managing the Non Motor Symptoms of Parkinson's Disease. We have learned a lot about how to better manage my husbands PD from these two books.

By makrivah On 2015.09.28 19:18
I highly recommend both books that VioletV mentioned. Excellent. Easy to understand. Indexed thoroughly. Worth every penny.

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