I wanted to share this infomation, made the pain thing a little more understandable for me

[Susie01]

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Central Pain in Parkinson's Disease

What It is and How to Cope With It

From Patrick McNamara, Ph.D., former About.com Guide

Updated April 09, 2009

About.com Health's Disease and Condition content is reviewed by the Medical Review Board

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Christopher Robbins/ Getty Images

Most pains from Parkinson's disease1 are due to the immobility imposed on you by the disease. Cramps, contractures, stiffness and rigidity all can usually be treated with a combination of optimal dopamine replacement therapy2 and exercise or physical therapy. Central pain syndromes of PD, however, require something more than standard treatments for PD.

Central pain is pain produced by abnormal function of the brain’s processing system for sensation and pain. It's not like you can massage a muscle and have the pain go away -- tThe source of the pain in central pain is NOT a muscle cramp or even a damaged internal organ. Instead, the source is in the brain itself, so it is there that doctors go to treat pain of central origin.

Researchers believe that central pain of PD may result from abnormalities of sensory pathways in the basal ganglia3 and perhaps also in the thalamus. The basal ganglia are a collection of nerve groups deep in the center of the brain that typically help to coordinate complex movements but they also process sensations related to movements. The thalamus is known as a relay from the "periphery," the limbs and the body, to the center-the brain. The thalamus gathers up all the sensations in the body and sends them up to the thinking centers of the brain where they are evaluated for significance. If either the basal ganglia or the thalamus alter their functioning due, for example, to loss of dopamine4, they may start to erroneously interpret sensations as pains. Then you begin to fell pains coming from nowhere in particular -- but nevertheless feeling quite severely "painful."

How It Feels

Pains of central origin can be felt as stabbing, burning, piercing, scalding and so forth. They can be felt in any part of the body. Nothing really relieves this sort of pain. No repositioning of the body can do so. Even sleep sometimes provides no real relief. Each person is different. Sometimes opiates will provide relief, sometimes not. Sometimes opiates combined with anti-depressants helps, sometimes not. Sometimes subcutaneous injections of the dopaminergic apomorphine into the region of pain helps, sometimes not.

How to Get Help

The best person to guide you in your search for relief from a central pain is a pain specialist who consults with your PD specialist. It may be a combination of opiates, anti-depressants, exercise and adjustments in your PD meds. Whatever it is, it is worth pursuing until you find what works for you.

[Court]

This is really interesting. Thanks. Just wondering how I know which pain I am getting in my leg. Think I will give my Parkinsons physio a ring.

[Susie01]

I have had the spasms, regidity, etc. This paih is very different.

[Kat00]

Thank you Susie for the great information.I am reminded of how people who have had a limb amputated can have "phantom pain" in the missing limb even though it is not there.

How frustrating to have extreme pain and have people say "it is all in your head"...when in a sense it is, because your brain is originating the pain......

Hope you find some relief.

[PatV]

I started to talk to my neuro about pain management and he brushed me off. "don't need more drugs" I don't want drugs. I want to be drug free. I'll try again. He's a research doc. He'll have to listen sooner or later

[PatV in reply to PatV]

drug free and pain free, I meant @*@

[Koko in reply to PatV]

Dear PatV,

I don't understand any doctor who refuses to help a person who is suffering from pain. He neds to prescribe relief medicaton. Who in the world said we must suffer? OUr lives are short enough. We dont have to add pain to our list of characteristics.. Show me a person who likes pain and will show a certified NUT. .It is your body.Tell him you want and need the meds. And then read him the story about "Walking a mile in someone elses shoes." Best of luck

[PatV]

He has given me meds. Xanax klonopin percoset. What I failed to communicate is (a) I am in recovery & do not wish to relapse (b) the meds make my visceral off (constipation) worse -->more pain and (c) if there's non-med pain management biofeedback PT massage etc. How to get Medicare to pay for it. Lemme at it! Thanks!!

[etterus]

It is all in our head.... no brain no pain. There is no virtue in suffering. My mother used to say "the more we suffer on earth the higher our place in heaven". Makes me wonder if it was a campaign to recruit volunteers for torture. Just crazy.

As a 30 year career ortho PT, I met many a Doc that felt little compassion for neuro-musculo-skeletal pain. I think they are easier to find today if you keep looking. I can say I had a commitment to minimalize pain in my practice.... it actually sped up the recovery by inhibiting inflammation and maximizing participation by the patient.

[Susie01 in reply to etterus]

Very well spoken! I had a great PT when I had shoulder reconstruction who understood just how far he could push things and not cause further pain or injury. When he was not working, I had others who were not nearly so caring. I got to the point that I would only schedule with him. Before the shoulder was completely healed, I fell and re-tore the rotator cuff, then a frozen shoulder. My doc wanted me to use his PT, but I went back to the one I trusted and the frozen shoulder was a thing of the past within three months. My ortho was very pleased.

Yes, inflammation is a huge contributer, I won't go into it, but I also have edema from CHF that I am sure only makes it all worse.

[Susie01]

Pat,

I have never been in your shoes with addiction, but lost my brother to drug addiction and as a nurse saw far too many docs overprescribe medications and the patients get hooked. On the other hand are the docs that as soon as you mention pain, they start into the renditon about not prescribing meds. For me, I don't want just any pain med given to me me for an illness that is going to be with me for the rest of my life. But I think it is important to find some form of relief if not, it can drive you crazy!

[wifeofparky]

Very interesting and informative. Thanks for sharing.

[Kadie57]

I have a pain and I ache so serverely when I have a PD med spell I could just cry, I think is is a form of spasam in the muscles because the rigidity of then arms making it hard sit to wait on the meds to work, then I get a motion sicknes, it comes with the spells and is slow to go away even after the meds work?? almost like a vertigo.

[Susie01]

Virtigo can be a PD sypmptom but can also be caused by the meds...just this crazy cycle. I can relate to the pain, and I have cried which is not like me at all. I have always had a very high pain tolerance. I am glad we have this site where there are folks who understand each other. The spasms, I have only had in my lower legs, wierd it was on the front side, not the calves.

[Zuke]

Rather than "central pain," I'd rather call it "phantom brian pain," and I do not look forward to getting it.

[etterus in reply to Zuke]

Very astute.

[Susie01]

It is almost phantom, comes out of nowhere, sometimes I feel like every nerve cell in my body is shouting "pain". I hope you do not get it, I would only wish something like this on my ex!