Do you experience pain with your PD?
 

I am writing an article about pain with Parkinson's and need your help. Would as many of you as possible answer a few questions and return to me by November 1, 2010? You may cut and paste the info below online in your reply to this thread, or send me a Private Message with the informtion. Thank you - all information will be kept confidential, and your name will not be identified at all; not even with your responses:
Peggy

---------cut below here and return or paste info in your reply -----------


1. Do you have pain that accompanies or is a result of your Parkinson's symptoms?

___ Yes ___ No

2. Where is your pain located? (Please be as descriptive as possible)

For example: Headache - temple area or
or writhing of lower leg muscles.

3. Does the pain get disabling enough that you take medication or do some other therapy for relief?

___ Yes ___ No
If yes, give details; e.g. yes; I take 2 Tylenol for my headaches. Or yes; I have physical therapy twice a week.

4. How long have you been diagnosed with Parkinson's?
____ days ____ months ____ years

5. Do you believe, or has your doctor told you that the pain is due to your Parkinson's?

___ Yes ___ No

Example, if yes:
Yes - I have dystonia due to dyskinesia in my feet.

6. Do you believe or have you been told the pain is due to a medication you have taken long term for Parkinson's?

___ Yes ___ No

7. On a scale of 1-5 (with 5 being the most severe), how would you rate your pain most of the time?

1 ___ 2 ___ 3 ___ 4 ___ 5 ___

8. Have you been told that you have or have you ever been diagnosed with any of the following (if associated with your site of pain) ? Check all that apply:

Fibromyalgia ____ Dystonia ____ Severe dyskinesia ____

Degenerative disc disease or herniated disc _____ Arthritis _____

Spinal cord injury ____ Spinal stenosis ____ Scoliosis _____

None of the above _____

Comments?

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Thank you!

PAIN QUESTIONNAIRE

1. Do you have pain that accompanies or is a result of your Parkinson's symptoms?

_X__ Yes ___ No

2. Where is your pain located? (Please be as descriptive as possible)
mid- and lower back (this is more intense and persistent than any back pain I experienced pre-PD)
For example: Headache - temple area or
or writhing of lower leg muscles.

3. Does the pain get disabling enough that you take medication or do some other therapy for relief?

_X__ Yes ___ No
If yes, give details; e.g. yes; I take 2 Tylenol for my headaches. Or yes; I have physical therapy twice a week.
2 ibuprophen or Tylenol
4. How long have you been diagnosed with Parkinson's?
____ days _6___ months __9__ years

5. Do you believe, or has your doctor told you that the pain is due to your Parkinson's?

_X__ Yes ___ No
I believe the pain is part of my PD symptoms. Neuro was somewhat dismissive; told me his wife used an ointment called "Blue Rhino" for back pain and suggested NSIDS if desired. It is troublesome mostly when I bend and lift repeatedly.
Example, if yes:
Yes - I have dystonia due to dyskinesia in my feet.

6. Do you believe or have you been told the pain is due to a medication you have taken long term for Parkinson's?

___ Yes __X_ No

7. On a scale of 1-5 (with 5 being the most severe), how would you rate your pain most of the time?
1 most of the time, about 3 upon typical yard work exertion.
1 ___ 2 ___ 3 ___ 4 ___ 5 ___

8. Have you been told that you have or have you ever been diagnosed with any of the following (if associated with your site of pain) ? Check all that apply:

Fibromyalgia ____ Dystonia ____ Severe dyskinesia ____

Degenerative disc disease or herniated disc _____ Arthritis _____

Spinal cord injury ____ Spinal stenosis ____ Scoliosis _____

None of the above ___X__

Comments?
I also have occasional dystonia in the morning, but the pain with that is less than I used to experience with "charlie horses" in younger years (also occasional).
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Thank you!

1. Do you have pain that accompanies or is a result of your Parkinson's symptoms?

YES

2. Where is your pain located? (Please be as descriptive as possible)

NECK, LOWER BACK

3. Does the pain get disabling enough that you take medication or do some other therapy for relief?

YES

If yes, give details;

IBUPROFIN

4. How long have you been diagnosed with Parkinson's?

11 YEARS

5. Do you believe, or has your doctor told you that the pain is due to your Parkinson's?

YES

Example, if yes:

DYSTONIA IN NECK AND BACK AND SEVERE DYSKINESIA

6. Do you believe or have you been told the pain is due to a medication you have taken long term for Parkinson's?

YES

7. On a scale of 1-5 (with 5 being the most severe), how would you rate your pain most of the time?

3

8. Have you been told that you have or have you ever been diagnosed with any of the following (if associated with your site of pain) ? Check all that apply:

FIBROMYALGIA

1. Do you have pain that accompanies or is a result of your Parkinson's symptoms?

__x_ Yes ___ No

2. Where is your pain located? (Please be as descriptive as possible)

neck, jaw, lower back, feet, all early morning dystonia or related to wearing off meds mostly on more affected side, headache resulting from rigidity in jaw and face

intermittent RLS pain in night

abdominal pain

3. Does the pain get disabling enough that you take medication or do some other therapy for relief?

_x__ Yes ___ No

Painkillers (codeine/paracetamol/ibuprofen combos) if no relief after second daily meds



4. How long have you been diagnosed with Parkinson's?
____ days ____ months __7 1/2__ years

5. Do you believe, or has your doctor told you that the pain is due to your Parkinson's?

__x_ Yes ___ No

Told they are dystonia.

6. Do you believe or have you been told the pain is due to a medication you have taken long term for Parkinson's?

__x_ Yes ___ No

Abdominal pain due to entacapone I believe

7. On a scale of 1-5 (with 5 being the most severe), how would you rate your pain most of the time?

1 ___ 2 ___ 3 _+__ 4 ___ 5 ___

pain rating is for back and face, the rest is around 2

8. Have you been told that you have or have you ever been diagnosed with any of the following (if associated with your site of pain) ? Check all that apply:

Fibromyalgia __x__ Dystonia __x__ Severe dyskinesia ____

Degenerative disc disease or herniated disc _____ Arthritis _____

Spinal cord injury ____ Spinal stenosis ____ Scoliosis _____

None of the above _____

Comments?
With the exception of abdominal pain and RLS (both I think are meds related) all pain was worse prior to starting sinemet. Prior to diagnosis had individual dx of RSI for R hand, TMJ for jaw and face, cervical spondylosis for neck, and frozen shoulder, all were related to increasing rigidity. These were then ALL re-classified as fibromyalgia. Later this dx withdrawn as all responsive to sinemet, and bradykinesia, bradyphrenia and balance problems emerged, and dx became PD. Dystonia mentioned as a cause of pain but not as a dx.

Lower back pain, more recent, is sinemet responsive, returns with wearing off v painful....and present every morning, accompanied by a need to writhe?, twist? especially when walking, uncomfortable sensation (dyskinesia?), relatively recent, slowly getting worse more frequent for about 18 months

PAIN QUESTIONNAIRE

1. Do you have pain that accompanies or is a result of your Parkinson's symptoms?

_X__ Yes ___ No

2. Where is your pain located? (Please be as descriptive as possible)
jaw, neck, mid back, lower legs and feet

3. Does the pain get disabling enough that you take medication or do some other therapy for relief?

__X_ Yes ___ No

Ibuprofen, Tylenol

4. How long have you been diagnosed with Parkinson's?
__20__ days _9___ months __3__ years

5. Do you believe, or has your doctor told you that the pain is due to your Parkinson's?

__X_ Yes ___ No

I believe the pain is dystonia from wearing off and dyskinesia.

6. Do you believe or have you been told the pain is due to a medication you have taken long term for Parkinson's?

_X__ Yes ___ No

7. On a scale of 1-5 (with 5 being the most severe), how would you rate your pain most of the time?

1 ___ 2 ___ 3 _+__ 4 ___ 5 ___

8. Have you been told that you have or have you ever been diagnosed with any of the following (if associated with your site of pain) ? Check all that apply:

Fibromyalgia _X___ Dystonia ____ Severe dyskinesia _X___

Degenerative disc disease or herniated disc _____ Arthritis _____

Spinal cord injury ____ Spinal stenosis ____ Scoliosis _____

None of the above _____

Comments?

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Thanks!
 

Thank you so much. I have had about 8 email contacts and those here. Although it is far from a scientific study, it appears that those who predominantly tremor have less problems with pain. We who would list rigidity or bradykinesia (extreme slowness) are the ones suffering from so much pain.

PLEASE KEEP RESPONDING TO THIS SURVEY!

I also think that thingns like dyskinesia do wear and tear on shoulders, neck, and evenn lower back, causing pain. And gait and poor posture don't help.

Thanks again. I'm looking forward to writing it. If anyone would like to send recent articles or studies (2009 or 2010), plelase do so.

Peggy

1. Do you have pain that accompanies or is a result of your Parkinson's symptoms?

__x_ Yes ___ No

2. Where is your pain located? (Please be as descriptive as possible)
R. shoulder, upper spine near R. scapula, neck, lower back, sometimes pain foot or leg cramps, sciatica L. lower side.

For example: Headache - temple area or
or writhing of lower leg muscles.

3. Does the pain get disabling enough that you take medication or do some other therapy for relief?

__x_ Yes ___ No
If yes, give details; e.g. yes; I take 2 Tylenol for my headaches. Or yes; I have physical therapy twice a week.
I've tried many different things, too many to list, in the past, but none really made enough differences to be worthwhile.

4. How long have you been diagnosed with Parkinson's?
____ days ____ months __3.75__ years

5. Do you believe, or has your doctor told you that the pain is due to your Parkinson's?

__x_ Yes ___ No

Example, if yes:
Yes - I have dystonia due to dyskinesia in my feet.

I have so many types of pain, it's hard to say. My doctor isn't sure, though she says some may be, but I'm certain most of it is.

6. Do you believe or have you been told the pain is due to a medication you have taken long term for Parkinson's?

__x_ Yes ___ No
One type, dystonia in my R. leg & foot, only started after Sinemet & got better when I went off it. However, the scapula pain got better with Sinemet.

7. On a scale of 1-5 (with 5 being the most severe), how would you rate your pain most of the time?

1 ___ 2 ___ 3 ___ 4 _x__ 5 ___

8. Have you been told that you have or have you ever been diagnosed with any of the following (if associated with your site of pain) ? Check all that apply:

Fibromyalgia __x__ Dystonia __x__ Severe dyskinesia ____

Degenerative disc disease or herniated disc ___x__ Arthritis ___x__

Spinal cord injury ____ Spinal stenosis ____ Scoliosis _____

None of the above _____

Comments?

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Thank you![/QUOTE]

Do you experience pain with your PD? Reply to Thread
 

1. Do you have pain that accompanies or is a result of your Parkinson's symptoms?

_X__ Yes ___ No

2. Where is your pain located? (Please be as descriptive as possible)
calves-cramping at night. Worse than the RLS

3. Does the pain get disabling enough that you take medication or do some other therapy for relief?

__X_ Yes ___ No
Neuro has put me on Requip XL During middle of night I may take Vicodin

4. How long have you been diagnosed with Parkinson's?
____ days ____ months ____ 13 years

5. Do you believe, or has your doctor told you that the pain is due to your Parkinson's?

__X_ Yes ___ No
not sure what you call tighting of muscles when they cramp up

6. Do you believe or have you been told the pain is due to a medication you have taken long term for Parkinson's?

___ Yes __X_ No

7. On a scale of 1-5 (with 5 being the most severe), how would you rate your pain most of the time?

1 ___ 2 ___ 3 ___ 4 _X__ 5 ___

8. Have you been told that you have or have you ever been diagnosed with any of the following (if associated with your site of pain) ? Check all that apply:

Fibromyalgia ____ Dystonia ____ Severe dyskinesia ____

Degenerative disc disease or herniated disc _____ Arthritis _____

Spinal cord injury ____ Spinal stenosis ____ Scoliosis _____

None of the above ___X__

Comments?

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Thank you![/QUOTE]

1. Do you have pain that accompanies or is a result of your Parkinson's symptoms?

_X__ Yes ___ No

2. Where is your pain located? (Please be as descriptive as possible)
Shoulders, neck, low back.

3. Does the pain get disabling enough that you take medication or do some other therapy for relief?

_x__ Yes ___ No
I take usually about 8 aspirin daily and 1 hydrocodone at night.

4. How long have you been diagnosed with Parkinson's?
____ days ____ months _7___ years

5. Do you believe, or has your doctor told you that the pain is due to your Parkinson's?

__X_ Yes ___ No

Doctor said knotted muscles in neck, shoulders and throughout back are from dystonia. But the low back pain is severe degenerative disc disease. I have had a 3 level fusion and another surgery for pinched nerve and I am still in bad pain

6. Do you believe or have you been told the pain is due to a medication you have taken long term for Parkinson's?

___ Yes _X__ No

7. On a scale of 1-5 (with 5 being the most severe), how would you rate your pain most of the time?

1 ___ 2 ___ 3 ___ 4 _X__ 5 ___

8. Have you been told that you have or have you ever been diagnosed with any of the following (if associated with your site of pain) ? Check all that apply:

Fibromyalgia ____ Dystonia __X__ Severe dyskinesia ____

Degenerative disc disease or herniated disc _X____ Arthritis ___X__

Spinal cord injury ____ Spinal stenosis _X___ Scoliosis __X___

None of the above _____

1. Do you have pain that accompanies or is a result of your Parkinson's symptoms?

_X__ Yes ___ No

2. Where is your pain located? (Please be as descriptive as possible)

For example: Headache - temple area or
or writhing of lower leg muscles.

Right foot mostly in my toes and extends sometimes into my arch and calf.

3. Does the pain get disabling enough that you take medication or do some other therapy for relief?

___ Yes __X_ No
If yes, give details; e.g. yes; I take 2 Tylenol for my headaches. Or yes; I have physical therapy twice a week.

No, it generally only happens in the morning pre-Sinemet

4. How long have you been diagnosed with Parkinson's?
____ days _6___ months __2__ years (symptomatic for 10 years)

5. Do you believe, or has your doctor told you that the pain is due to your Parkinson's?

___ Yes ___ No

Example, if yes:
Yes - I have dystonia due to dyskinesia in my feet.

Never asked post diagnosis. I knew it was due to PD as foot dystonia was a defining symptom for me after tremor.

6. Do you believe or have you been told the pain is due to a medication you have taken long term for Parkinson's?

___ Yes ___ No

7. On a scale of 1-5 (with 5 being the most severe), how would you rate your pain most of the time?

1 ___ 2 ___ 3 __x_ 4 ___ 5 ___

8. Have you been told that you have or have you ever been diagnosed with any of the following (if associated with your site of pain) ? Check all that apply:

Fibromyalgia ____ Dystonia ____ Severe dyskinesia ____

Degenerative disc disease or herniated disc _____ Arthritis _____

Spinal cord injury ____ Spinal stenosis ____ Scoliosis _____

None of the above ___X__

Comments?

Prior to my diagnosis, I only had foot dystonia triggered by exercising whether running, hiking, bicycling, on an elliptical. Now I no longer have that but get the pre- first doses of Sinemet dystonia and it hurts more. It also extends into my right calf on some mornings and I end up with a nasty Charley Horse. Never seems to last longer than 15-20 minutes which would be a long wait to "on" for me.

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Thank you![/QUOTE]