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Pain and Parkinsons
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propark posted:
New to the discussion, but not to parkinsons. I was wondering if other parkinsons patients are having extreme pain caused from parkinsons. I would also be curious to what is helping with their pain. any information would be greatly appreciated.
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granbaker responded:
I have weird unexplained pains on occasions. When I really looked at it I found that I usually broke out with shingles within a few days. The Dr. gave me Gababengin 600 mg 3 times a day. It is supposed to control pain that goes along your nerve paths. It works.
I don't believe that I have pain that can be blamed on Parkinson's. Is it possible that the pain may be caused by another medical problem? There are a lot of pain medications out there. But, they seem to be always addictive. A real quandry.
 
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njladyluck responded:
Hi Propark, I have pain mostly from rigidity and stiffness and stretching exercises and amazingly tai chi really helps with the relief of pain from the rigidity, curling toes, stiff fingers, etc. Have a great day!!!
 
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lovedogs1955 responded:
Yes, I have had pain (sometimes severe) for several years, in fact, before we knew that I indeed had PD. My pain started in my chest when I talked/laughed, or did much of anything with my upper body . Doctors were very puzzled. I described the pain as the same quality as a bad "ice cream headache" but in my chest. It progressed to the larger muscles in my arms and legs. I still have it. Because of my past history (breast cancer and all kinds of complications due to the side effects of that treatment) my entire medical team, including my internist, my cardiologist, my endocrinologist and my neurologist) all feel that the best way to treat MY pain is to use Rx pain releivers (I have one for my "everyday pain" and another for my "severe pain") to use as needed. I am disabled, so I am able to relax throughout the day as needed and that helps. Somedays, nothing helps. and I just baby myself. However, I have found that excercises as instructed by my Physical Therapist and WALKING help immensely. I developed foot drop a few years ago and now wear a brace on my lowere right let/foot and use a cane because of the dizziness that I have, but I get out and enjoy life the best way I can. I am very fortunate to have a very supportive husband and great friends who help me everyday,

I hope you are able to find some relief to your pain!
 
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propark replied to lovedogs1955's response:
Thanks to all of you for your advice. It seems like a better exercise regiment may be the key for me. However I will look into all of the advice that was posted. I hope everyone is feeling ok.
 
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lovedogs1955 replied to propark's response:
I started having some strange pain last week and was wondering if anyone else has experienced anything similar. It's very hard to explain, but I have periods of a pain in my arm starting just below elbow area, but not on the backside of my arm. It feels really "deep" and has a warm, nerve type pain. Starts with no warning and no obvious triggers and lasts for about 5 minutes. While I am having the pain, my arm feels useless and afterwards it feels weak. I have had it mostly in my left arm, but the last episode I had (which was about 5 days ago) I had it in both arms at the same time. I already am on the maximum daily dosage of Gabapentin because I have peripheral neuropathy from chemotherapy. Anyone else have something like this?
 
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propark replied to lovedogs1955's response:
Hi Lovedogs,

I believe your pain is quite different from mine. My pain is throughout my whole body, and extreme in my legs. It sounds to me that maybe you have some sort of nerve damage seeing that the pain is isolated to one area of your body, sorry I wish I had some answers or guidance for you. Good luck to you and I hope your pain subsides.
 
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indiej responded:
I have had PD over 10 years now, am on my 3rd neurologist due to retirements of #1 and #2, and in all this time not one has ever told me that PD can cause such debilitating pain as I am having now in my lower back. It started about 3-4 years ago, family dr. took x-rays and attributed it to arthritis and sent me to a pain management specialist who had MRI's also done. I have had many, many injections and also he has zapped the nerve endings several times with laser-type equipment to deaden them. These helped in the first year or so, but now I am lucky if they last a month. No OTC meds help the pain at all. The only relief I had was 7 months ago when he put me on Vicodin and Skelaxin for 4 weeks while I was going to physical therapy. I do 10-15 minutes twice a day of slow stretching exercises. Some days it takes me 30-45 minutes to get dressed. I am so sick of this pain, I want to die some days. I can not stand to be on my feet or sit in a chair more than 6 hours out of a day. I am 69 years old and spend most of my days flat on my back. I am new to these forums, and I am going to talk to my neurologist in a few days about the pain to see what her answers may be. Will let you know if she can suggest any answers............
 
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propark replied to indiej's response:
Thank You, for your response. I will look forward to hearing what your neurologists suggests. Your problems sound quite similar to mine.
 
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lovedogs1955 replied to indiej's response:
The pain that I am having in my arms is VERY different from the "usual" pains that I have throughout my body. Some days, like yesterday, I was having such severe generalized pain that I gave in to it. I was having "stiff mouth" as well. I took my Rx pain pills and retired to the couch and TV for several hours. Also took a nap after lunch. I had an episode of that weird arm pain and then both hands felt sort of weak and tingly. Kind of like after you bump your funny bone and the arm is starting to recover.

Like most of the rest of you, I had no idea about the pain that PD causes. I am a disabled RN and never knew about all of the other things that go along with this disease. I have been dealing with pain and so many other things, including multiple bowel obstructions/surgeries, just to name a few. I am 56 years old and have been going through this stuff for 10 years now. Symptoms started while I was going through chemotherapy for breast cancer. To say that I am tired of all of it is an understatement.
 
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Rozmund replied to lovedogs1955's response:
Hi Propark: We have all learned that PD is a neurological disease, that is why our initial diagnosis is usually made by a Neurologist...my experience has been that PD people are often shallow breathers...in time this depleted the 70 trillion cells in our bodies of a constant supply of oxygen through the blood stream...cells that are lacking in oxygen often cry out to us in pain...I have used several pain killers - they have their place..but mainly I try do deep breathe for at least 3 minutes at a time, in and out, focused...at first I got dizzy, but that soon stopped...3 times daily has helped me a lot.. I also am on a supplement regime that works for me..I feel the fewer chemicals I take in the better off I am..every supplement I take is well researched and the focus is to keep my cells as healthy as possible..especially the neurotransmitor cells in the brain, as these are the ones that carry out our movement desires..mild walking is also extremely beneficial...I use urban walking poles for two reasons..
they help support me should I step on a stone and lose my balance, and they force me to breath as I walk, plus this type of walking unlike regular walking strengthens the core body muscles...you can check up on these - sold in almost every country...

take your PD medications on time - this is imperative..
 
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Ksara94 responded:
HELLO,..i, TOO, HAVE PAIN,..I EQUATE SOME OF IT TO THE DISEASE, AND SOME OF IT DUE TO LACK OF MAINTAINING MY REGULAR EXERCISE. i AM MORE LAZY WHEN IT COMES TO GETTING REGULAR PHYSICAL EXERCISE. wITH ALL I'VE READ,,.,.IT'S SO IMPORTANT TO GET PHYSICAL EXERCISE EVERYDAY,...EVEN FOR THOSE WITTHOUT pd, BUT BECAUSE WE CAN STIFFFFEN UP EASILY, THE EXERCISE IS VERY ESSENTIAL. i WALK EVERYDAY ABOUT 1/4-1/2 MILES WHEN MY LEGS ALLOW, AND i DO IT WITH MY CANE,..AND A FRIEND. tHE PAIN I EXPERIENCE IS MOSTLY IN MY LEGS (HIPS) AND LOWER ABCK,..HOWEVER I FEEL STIFFNESS IN MY SHOULDERS ND NECK AT NIGHT OFTEN. i SLEEP WITH A GOOD PILLOW AND DO MILD STRETCHING/ROM EXERCISES TO HELP CUT DOWN ON THE PAIN FROM PROGRESSING BEFORE BEDTIME.
 
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propark replied to Ksara94's response:
I am extremely overwhelmed by the support of this community. I will try to take everyones advice and use some of this, to try and help me with my pain. I will also respond with any information that I believe may benefit you folks as well. Thank You to everyone in this parkinsons community for listening and responding.

Thank You,

Propark
 
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lovedogs1955 replied to propark's response:
The pain in my arms became very severe last week and so I saw my Neuro. I was diagnosed with carpal tunnel in both arms. So, I now have peripheral neuropathy, Parkinson's and Carpal tunnel affecting my hands and arms. Right now, the treatment is conservative, wearing braces at night. Had to start wearing brace on my left arm/hand after only a few days because of intense pain that started when I tried to grab something.
 
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worn1 replied to lovedogs1955's response:
lovedogs1955
Is the treatment helping at all? The reason I ask is I was misdiagnosed with carpal tunnel when it was actually parkinsons. Hopefuly Dr Stacy will weigh in.
w


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