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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 ----------- PAIN QUESTIONNAIRE 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? ---------------------------------------------------------------- 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). ---------------------------------------------------------------- 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 |
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) 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? ---------------------------------------------------------------- |
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 |
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) 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? ---------------------------------------------------------------- Thank you![/QUOTE] |
Do you experience pain with your PD? Reply to Thread
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) 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? ---------------------------------------------------------------- Thank you![/QUOTE] |
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) 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 _____ |
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) 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. ---------------------------------------------------------------- Thank you![/QUOTE] |
Keep it coming, please!
Conductor - we have a lot in common! My foot (right one) does the same thing! Both used to get dystonia when off, then the experimental surgery "fixed" the one side that was treated,
Strange disease, ain't it? Peg |
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) Limbs, feet & calves, forearms & hands/fingers get bad cramps. Lower back. Abdomen. 3. Does the pain get disabling enough that you take medication or do some other therapy for relief? _X__ Yes ___ No Do some stretching, take 800 mg Motrin 4. How long have you been diagnosed with Parkinson's? ____ days __6__ 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 Dystonia, apparently, has caused this 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 Not taking medication as of Dec 2009. Trying to control w/diet & exercise. 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 ___ Before PD never had pain like this, except w/injury. 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 know getting off & staying off meds would be tricky & risky; i tritrated down from 25/100mg 3xdaily of carbidopa levodopa over a period of 2 months. Ran, walked & light weights several times a week; cut out all carbs, processed foods & caffeine (except coffee in the morning & green tea)...my movement improved to the point pain was at a 2 most days-even with dystonia, but had bladder & cognitive difficulties. Kept that up for 4 months, then with excessive travel, the good habits kind of went south. After a few months, got back on a good exercise schedule, imrpoved diet habits but include some carbs now. Constant pain leve 4-5, cognitive impairment, bonedeep fatigue, etc. Prblems holding things, writing, etc. |
PAIN QUESTIONNAIRE
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) Shoulders, arms, legs, feet 3. Does the pain get disabling enough that you take medication or do some other therapy for relief? Yes- I sometimes take ibuprofen for pain in my right leg and knee. I think PD in the left leg puts a strain on the right leg and causes the pain. Pain from dystonia in feet occurs when PD meds wear off and from dyskinesia. Pain in shoulders and arms is helped by exercises learned in physical therapy. 4. How long have you been diagnosed with Parkinson's? 5 years 5. Do you believe, or has your doctor told you that the pain is due to your Parkinson's? Yes - I have dystonia due to dyskinesia in my feet. Pain in shoulders and arms is helped by exercises learned in physical therapy. 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, I cut back on my meds because I was experiencing pain after taking them. 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 __X_ 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 __X__ Severe dyskinesia ____ Degenerative disc disease or herniated disc _____ Arthritis __X___ Spinal cord injury ____ Spinal stenosis ____ Scoliosis _____ None of the above _____ Comments? |
Peg, I don't know how to cut & paste. Quick answer:
Pain in morning..mostly trapezeus , shoulders, neck......stretching & exercize before getting out of bed knocks it out of me and I can move freely. Then, I only get pain in neck & shoulders when getting low on l-dopa (time to take!) Hope you are feeling bettter! |
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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 ----------- 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) left & right foot arch cramps, leg cramps, upper back pain, intermittent pain 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 sometimes I take ibuprofin on bad days, get a massage rarely – cant afford it, 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 _24___ 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. dystonia, dyskinesia, stiffness, muscles fighting, fall, injurie 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 of course dyskinesia has its down side 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 _x___ Severe dyskinesia _not sure___ Degenerative disc disease or herniated disc _____ Arthritis _____ Spinal cord injury ____ Spinal stenosis ____ Scoliosis _____ None of the above _____ Comments? |
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I have usually tried to ignore the pain part of Parkinson's Disease. Not ourt of ignorance or deliberitly but - more denial than anything. That fall I had, changed everything. Dislocating my shoulder and the pain every time I start shaking, have dyskinesia - almost anything can set off the tightenning and pulling of the damaged muscles causing excruciating pain. Making previous problems or pains see miniscule. my heart goes out to those who live with pain. I begin to understand. In one of my dark hours i wrote this poem about it. You can use it if you want. or not. It just says it like it is. Projection Sparingly I minimize words perhaps compelled by fear that acknowledgement itself held power over the impact of the pain, when it stampedes over my body. I try to take my mind to another place to float above the red hot angry waves – in vain. Desperate to try any means to fend off a repeat invariably, I am slammed against impenetrable walls of consequence, whose universal laws of cause & effect allow no negotiation, no recourse, no reprieve - just – more pain. Someday I will write again, of beauty & music of spring wild flowers & laughter’s balm after this firestorm has passed over me if I can find a blade of grass peeking through cinder & soot If there is any part of me un-devoured by pain Then err that midnight hour had passed in unparallel relief - words had poured forth, been planted, and watered with sweet delight proudly to grow up through my darkness with my rebirth to light! - Oh, if it were – only today! @oct 20, 2010 by April Curfman |
Thinking of You
Oh, April! That could have just as easily been any one of us that had that fall. I am so glad now that I decided it wasn't wise for me to go to the World Congress. About 3 weeks before the WPC, I had a tiny fall compared to yours, and it really scared me.
Your words tug at my heartstrings. Take care of yourself. Peggy ((((HUGS!)))) |
[QUOTE=pegleg;706391]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
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) Low back and posterior rib cage (Hx 0f multiple rib fractures) Arthritic left knee injured in a fall. Pain most acute during off cycles. Right foot dyskinesia 3. Does the pain get disabling enough that you take medication or do some other therapy for relief? Pain improves with Stalevo. Requip XL. __X_ Yes ___ No If yes, give details; I try to avoid analgesics. Occasional Alleve. I work with a stretching therapist twice a month to relax postural contracture with rounded back and head forward posture.. Stretdhing is painful but feel much better for a few days. 4. How long have you been diagnosed with Parkinson's? ____ days ____ months __8__ years 5. Do you believe, or has your doctor told you that the pain is due to your Parkinson's? __X_ Yes ___ No Pain responds to Dopamine drugs 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 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 _X____ Arthritis __X___ Spinal cord injury ____ Spinal stenosis ____ Scoliosis _____ I believe most of my pain is due to degenerative joint disease and previous injuries. The muscle rigidity of PD causes abnormal tightness and contracture around the injury adding to the discomfort. |
THANKS, Again!
I really appreciate everyone's input into this assignment. It will be your comments that makes this an interesting article. Thank you so much!
Peg |
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UPDATE re: Pain article
This pain issue has truly been o f great interest t o many more PWP's than expected. The article publication will be delayed a little longer in order to allow as many people as possible to respond.
As said previously, this is not a scientific survey, but answers w ill be collected for informational purposes only. (It will give me more time to research the topic, too!) Thank you again for participating. Peggy :) |
Pain
Hi Peg,
Glad that you extended the dates of your survey. Good luck with the article. Victoria 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) I have overall body pain- similar to Fibromyalgia? It seems to be an inflammatory response The pain is worst in the back of my neck 3. Does the pain get disabling enough that you take medication or do some other therapy for relief? _x__ Yes ___ No Ibuprofen works like a charm but for years I was taking 600 mg every 4 hours- sometimes throughout the night as well. Now I take maybe 2 x daily at most. I also take many anti-inflammatory herbs and that has really helped. Also, massage every 2 weeks. 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? ___ Yes __X_ No 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 __X_ 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? For me most of my pain seems to stem from exhausted muscle from tremor or inflammation and occasional cramping ---------------------------------------------------------------- Quote:
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PAIN QUESTIONNAIRE
1. Do you have pain that accompanies or is a result of your Parkinson's symptoms? XYes ___ No 2. Where is your pain located? (Please be as descriptive as possible) NECK, SHOULDERS, ARM, HAND FROM MUSCLE TIGHTNESS 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. STRETCHING, MUSCLE RELAXANTS, NSAIDS, AQUATIC EXERCISES 4. How long have you been diagnosed with Parkinson's? ____ days ____ months 20____ years 5. Do you believe, or has your doctor told you that the pain is due to your Parkinson's? __X_ Yes ___ No DYSTONIA 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? __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 _x__ 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 _x___ Severe dyskinesia ____ Degenerative disc disease or herniated disc ___X__ Arthritis ___X__ Spinal cord injury __X__ Spinal stenosis _X___ Scoliosis _____ None of the above _____ Comments? PD IS A ROYAL PAIN IN THE BUTT |
Hi Peggy ...
I would like to submit my vote for the "I have pain in the lower back, neuro told me it was PD related, Ibuprofen treatment, don't believe it is med related, I also have dystonia in my foot" brigade.
Seems there are more of us than I thought. Neil. |
Hi Peg,
Thanks for doing this research on pain. My MDC DR. put me on Gabapentin for pain. Anyone mentioned their experience with this drug? Seems like my dyskinesia's have gotten worse and I am not sure if it is related. Thanks again. Suzie |
Soozie,
I tried Gabapentin for pain - it did nothing for me. I even tried Elevil - by 4 PM every day, I was like chewing on and spitting out carpenter nails. It was not a happy experience. Poltergiest (sp???) reserected. I tried all the narcotics including methadone which I reacted very badly to - I went into what felt like congestive heart failure. A scary experience. BOTOX, injections, accupuncture, braces, physical therapy, psychotherapy, biofeedback, relaxation therapy - all to no avail. Cymbalta (antidepressant) helps some for pain. Actually what helped me best was aquatic therapy in 90 F water. TG |
Tulip Girl,
Thanks for the info. I don't think Gabapentin is working for me either. I seem to be gaining weight on it as well. Sounds like you have tried it all-scary times for you. I am starting aqua therapy in warm water again so thanks for the recomending the pool. Suzie |
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I took Gabapentin up until recently for the past ten months. I found it very useful for neuropathic pain related to complications from a cervical discectomy so despite having PD can't comment on its use in PD as it helped very much for the disc pain. I think I gained weight from taking it too (either that or lack of exercise) but the good thing about it is its not habit forming and my dosage was doubled in the past few months with no ill effects and titrating off it was no problem for me either. The pain I experienced was very intense and perhaps it would have righted itself without Gabapentin but just thought I'd let you know my experience with it. Tulip Girl have seen your postings on the spinal injuries group here. Welcome, nice to know I'm not alone with both that and PD! Cheers, Lee |
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Alas, I have not posted on spinal cord injuries only on MS group because they seemed so friendly when I first came aboard. BUT I do have SC injury with surgery for spinal stenois (cervical) from C-7 to C-2 and 2nd surgery for hernitioin. Terrible terrible pain for which gabapentin did not do anything. There are 2 other members who have tulip as part of their signature so maybe one of them is also SC poster. We can comisserate together. TG |
Hi Lee,
Thanks for sharing your experience with Gabapentin. My pain must not be neuropathic as it doesn't seem to be helping. I have no disc problems but my neck is very tight. Not sure if that is part of the problem. Probably just my PD! It's good that it helped you with that pain. Hi Tulip Girl, Hope you have found something to help with the pain. I agree with you completely- PD is a royal pain in the butt. Suzie |
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i can't tell you how many coffees or hours have gone into this reply. my brain is as slow to process audible, verbal, written materials as my body is to react. i was a math major in college. i woke up one day at work and found years worth of algebra, geometry,trig and calculus gone. it was all gone. erased like i had never, seen the equations, probability, defined answers, before. parkinson's disease creates a series of mis-fires, mis-read, mis-interpreted, over stimulated, delayed or non-functioning reactions within the neurons, nerves, and/or receptors. at any rate, my point is that these series of mis-fires can be created by the disease or meds to treat the symptoms of the disease. it took me over a year and a half, to become titrated from the maximum doses of mirapex and comtan. i had a daily journal, times, doses, food, experiences, side effects. it helped me recognize common patterns and address the issues. yet, it was most difficult for my movement disorder neuro to discern between meds, side effects and the disease process. it all just made me wanna punch him in the head. parkinson's disease is not for the squeamish, it causes pain, sleep disorders, and a host of issues that make us almost unrecognizable as the individuals we were prior to all this. somehow, i feel like i am a better or stronger person for it. just because others are unable to cope with the appearance of my illness, i see no reason to stay at home. the appearances of my disabilities, seem to be more accepted by bikers than "regular" folks lol generally, i scare people, tis why i seldom participate in parky stuff. maybe i didn't really need all that. but, that is how i choose to see it. |
toadie
It is so good to see you posting here again! I know how you agonize over what you area trying to say - because you care about not making matters worse in an already bad situation. That's what makes you so "special"
I like your analysis: "parkinson's disease is not for the squeamish, it causes pain, sleep disorders, and a host of issues that make us almost unrecognizable as the individuals we were prior to all this." I vote for nixing the word "almost." Thanks for your comments - would you like to fill out the survey now? lol Peggy |
Betrayal by the brain
BETRAYAL BY THE BRAIN: THE NEUROLOGICAL BASIS OF CHRONIC FATIGUE SYNDROME,AND RELATED NEURAL NETWORK DISORDERS
From the book BETRAYAL BY THE BRAIN: by Dr. Jay A Goldstein The nucleus in the thalamus that deals with pain has two pathways coming into it, a pain pathway and a touch pathway. But they share a single pathway from the thalamus to the cerebral cortex, where the message is interpreted. When pain occurs, the touch pathway is inhibited by thalamic GABA production. Impairment of this GABA secretion would result in touch sensation being perceived by the cortex as pain, or in inappropriate pain interpretation Stimulation of the thalamus by electrodes in awake subjects causes them to experience pain they had years ago, a recurrence of pain in old scars etc. CFS patients experience this and complain of recurrence of pain and odd bodily sensations when the fatigue gets worse. The basal ganglia neurons encode pain INTENSITY but NOT the LOCATION. Therefore, the basal ganglia are likely involved with a diffuse central pain disorder like FMS. The neurochemical network involved in the production of neurosomatic symptoms thus appears to be: The amygdala receives information from all neocortical sites and integrates external events with internal signals. CSF CRH is elevated in depression, schizophrenia, and obsessive-compulsive disorder (OCD). In CFS CRH is decreased, likely because of increased inhibition from the hippocampus. Prefrontal cortex glutaminergic hyposecretion to the amygdala may decrease CRH levels. Viral infections could also decrease levels of neurotransmitter substances. All information processed in the limbic system is referred to the PFC. Short-term memories made in the hippocampus are strengthened by recurrent hippocampalneuronal firing during delta (slow-wave) sleep. REM sleep is also vital for consolidation of new memories. These are both dysfunctional in CFS/FMS. Mg++ ionsare required to be removed from the NMDA receptors in order to increase excitatory neurotransmission. Because of insufficient presynaptic glutamate secretion, the Mg++block may not be removed and therefore synaptic strength which would be enhanced by NO, would also be reduced. glutamate--->attaches to adjacent non-NMDA receptors---->increased influx of Ca++, Na+, and efflux of K+, causing Mg++ to leave the binding site--->increased synaptic strength via NO enhancement. DLPFC altered glutaminergic secretion----->perturbed encoding and problem solvingin the hippocampus and decreased attention mechanisms and stimulus recognition in the inferior parietal cortex and medial temporal lobe, as well as perturbed pain messages to the neocortex from the thalamus. Basal ganglia neurons encode pain intensity but not location. This suggests that the basal ganglia could be involved with a diffuse central pain disorder such as fibromyalgia. Case history: A 45 year old physician with familial Parkinson’s disease, right side far worse than left, since age 38, refractory to treatment, developed FMS. A stereotactic left pallidotomy was performed which markedly decreased his right-sided dyskinesia and decreased his right-sided fibromyalgia by 75%, but had no effect on his left-sided pain. (The substantia nigra determines pain intensity but not location, and is analgesic. The globus pallidus inhibits the substantia nigra. )On SPECT scans, the degree of caudate hypoperfusion is directly related to patients’ report of pain. |
message to Libra
I think 8 aspirin day is an excessivee amount! You should check with your doctor.
Charlie |
too late but interested
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Best wishes and I'm sure a lot of us would be interested to hear the results of your study. Louise |
It's not too late
Louise
The group for whom I was writing this article did not realize the interest that would be stirred regarding PD and pain. They will be collecting further input whenever they finish setting up a database. Therefore, the article . has likewise been delayed. Just fill out the questionnaire here or send me a private message. And thanks! Peggy |
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