Body pain not a symptom of PD?

Today was my first appointment with the Neurologist. He gave me a regular neurological exam and said that from my examination and symptoms he really can't say it is Parkinson Disease for sure but since I have had a favorable result on the carb/levo his tentative diagnosis (he also referred to it as his working diagnosis) is PD. I already had the MRI to show no tumors or lesions or anything like that. I went over the litany of symptoms I have had for a long time and body aches was at the top of my list. He said that body pain is not a symptom of PD. Really? What convinced him to give a (tentative) diagnosis of PD is the fact that my tremors responded to treatment of carb/levo. He gave me a subscription for Azilect in addition to the carb/levo and wants to see me in 4 months unless there are new developments that brings me in sooner. Is this the normal course of events?

49 Replies

  • Severe pain is a symptom

  • This drives me crazy! Of course pain is part of PD! I have dystonia in my back, and my foot and on top of that tendonitis and many other aches and pains. They got better, much better, with the sinemet, but my back always lets me know when the meds are wearing off. It's the first sign. I can't even tell you how much pain I was in before I got diagnosed. I had been to doctors, gotten x-rays, gone to physical therapy. I felt like I'd been riding the rodeo circuit too long and had been bucked off too many times. I can't remember the percentage of people who suffer pain as one of the symptoms of PD but I think it's around 60%. Don't doctors read?! I have this dry skin in both my ears and when I went to my dermatologist he was useless, in fact he sprayed some of that horrible freezing stuff in my ear! When I went on the Mayo Clinic site and looked up PD there it was as one of the symptoms. This is not just a movement disorder disease. It comes with a plethora of symptoms and we all seem to get different versions of them or different symptoms altogether. Which is why we need to do our own research and educate ourselves as much as possible.

    Theresa, this is a long pissy way of saying, You Are Not Alone! Haha

  • I appreciate your post. The sinemet has relieved my pain also but the doctor insisted that pain is not a symptom. He said you might see it on some blogs but it's not from the PD. I get so mad at doctors also and I tell them so sometimes and they all think I'm a hypochondriac because of it -- at least I think that is what they believe.

  • Boy, you got that so right! The back pain and knee pain especially respond to sinemet. I can't believe the number of Drs who think pain is not related to Parkinsons. The disease does affect various part of the body, including the skin. Neurotransmitters function throughout the body.

  • For three years I've suffered upper back and neck pain.I was told after many tests it was myofacial pain.After developing a tremor I've now finally been diagnosed with Parkinson's

  • I don't know how you feel, but I was relieved to get the diagnosis of PD. I like to know what I'm dealing with even when the news isn't so great. All those damn symptoms popping up constantly and making no sense....argh!

  • My feelings exactly! I was really thinking myself that I was a hypochondriac! I had so many different symptoms.After the initial shock I thought at least I know what it is

  • Enidah -- you are absolutely right! I was relieved to have a diagnosis. I wanted to give a great big "I TOLD YOU SO" to my GP but haven't so far.

  • I was told I had myofascial pain last year and was sent to a physical therapist which tried to make me do things that were impossible for me to do. After three visits I quit in tears. I'm sure they thought all sorts of bad things about me.

  • Boy, can I relate to that! I actually ended up with bruises from the physical therapist. Never went back. At least I found out later he got fired. No wonder we're relieved when we finally get the diagnosis!!

  • I just read up to 85% of people have pain with PD.

  • I really appreciate hearing that.

  • I am going to be 65 next month and I remember quite well being told that the cramps from my period were all in my head. I think the doctors would have said the same thing about childbirth if we weren't screaming so loudly. So I have got no patience with that BS. Good for you for sticking up for yourself!

  • Of course the pain is all in my head, I have Parkinson's.

  • Dr. you are stupid, you are stupid and don't forget you are stupid !

  • Oh, thank goodness! I finally realize who that reminded me of...John Oliver. Funny!

  • I Love John Oliver....we stopped getting HBO and he is the only one I miss from HBO.

  • You gave me a good laugh!

  • If you check out Parkinsons uk site you will see PAIN IS IDENTIFIED AS NO 1 non motor symptom . Never mind blogs What does your doctor say about all the material by PD orgs in he US on pain? I reeally think he is very out of date!

  • Chronic pain in Parkinson's disease: the cross-sectional French DoPaMiP survey.

    "Pain was twice more frequent in PD patients than in patients without PD after adjustment for osteo-articular comorbidities..."

  • have to differentiate between pain and strain pain. eg, I have lower back strain now which has radiated from hip strain, because of extra weight put on left leg to compensate for the weaker right leg. I know this because my weaker leg is not as weak as it was, but is still a burden to left leg. know what I mean?

    I just have to recuperate a while, and i'm better a round.

  • In my case the pain comes from muscle stiffness, a very well known symptom of PD.

  • That makes sense. When I was not taking any medication I was always very tense. I would try to relax my muscles but they just tightened right up.

  • Parkinson's symptoms are commonly mistaken for "nerves". My arm tremors act up if I am stressed. Before diagnosis and medication I would calm them by relaxing and paying attention, so I figured /that/ was nervous tension. Same with your tight muscles.

  • so far I've had bouts of Charlie horse, excruciating but passes after a while, I tell myself it's restorative, no pain no gain. I've had a couple of incidents of electric leg (restless legs) rare for me. I've had achy calf muscles from going up and down basement stairs for a couple days trying to catch up on my laundry. I imagine that was my acytocholine complaining, trying to knock me up for dopamine, muscles were tense. realize that heart is a muscle. not good. takes me about 3 days to recover, realize I am not young anymore.

  • Bah! I sure have pains, and plenty of them -- especially at night. Unfortunately my tremor did not respond to C/L. I think the normal course of events stink! People deserve to be followed more closely than every four months, especially early on.

  • So every four months is the norm?

  • For me it is every month and a half, but I am not normal.

  • how are you different?

  • Do I seem normal to you? lol I'm just colorful that's it colorful.

  • I assume you're normal until you prove otherwise, it's only polite. hope you do the same for myself.

    just got a visit from my cousin, wonder what' up?

    is it her leading me into conversation about her inability to buy a vehicle because of bad credit rating or was she sent by her cohort about pasturing his cows on my premises? I wonder if she thinks i'm going to have to sell my van...get it? despicable people, always conniving, masterminding one thing or another. bah!

    she's hoping, like a lot of the yokles around here that I have dementia I bet.

  • My body aches so much when I first wake up and in the evening. Azilect helped this so much along with magnesium. It also helped with leg pain while driving as well as curling toes.

    Will be interested to see if it helps you. It took around 2 weeks to start to kick in.

  • I'm not sure that pain is a 'symptom' of PD. I think much of my pain follows on from loss of muscle strength - which leaves joints less supported that they should be. M

  • I was told by my neurologist specializing in Parkinson's at Emory that the benefits of carbidopa levodopa take a few weeks to demonstrate, or even longer. Not sure about the details of your experiment with carbidopa levodopa, but I personally might try stopping carbidopa levodopa to see what symptoms reappear and then go in again for testing. I say this because there are serious side effects to carbidopa levodopa that are experienced by 80% of those who take it after a period of time, it is a critically important medication to Parkinson's but be fully aware of not only the benefits but the side effects. I would want to be certain of my diagnosis before taking parkinson's medications which must pass the blood brain barrier to be considered an effective medication for Parkinson's. These are serious medications. Has anyone suggested a dat scan?

  • I asked about a Dat Scan and the Neurologists answer was I would have to find a trial that will do it....I found this very confusing. Is it the normal thing to get a Dat Scan from the Neurologists? I think I'm going to make a thread asking this question.

  • Hi Teresa, I was diagnosed about six months ago so, like you, I am fairly new to this. Were you just recently dxd? Datscan is one more tool that can be helpful in a diagnosis. It is an important tool though and I would suggest, as I mentioned before, a neurologist that is a movement disorder specialist can make that call. As an aside, I notice they are used frequently in trials. However they can be prescribed to help make a diagnosis. For me, understanding with as much certainty as possible is important before beginning a course of medication. Of course, it is up to you. Good luck on this journey ...

  • Where do you live oiur? I can't find a movement disorder neurologist here in Arkansas and apparently a Dat Scan is not a common thing here and it is mostly likely my insurance will not pay for it anyway. Yes I understand that the Dat Scan is the only sure way to know you have Parkinson and not some other tremor abnormality.

  • Hi Theresa, I live in Florida in the Tampa Bay area, where do you live in Arkansas? I would be surprised if there are no datscans available there though I understand that, unfortunately, datscans are not conducted everywhere. For example, I can get a DAT scan in Tampa but not, to my knowledge, in Sarasota, Florida. They are expensive but if a neurologist that is covered under your plan prescribes it then it likely will be covered. If you are participating in a clinical trial then, as I understand it, it will be covered by the clinical trial.

    I hope I am helping and I know this is a lot of information to take in, at least it has been for me. I might add, it has helped me tremendously to spend time on the Michael J Fox foundation website and there are a few good books out there as well :-)

    Please keep us posted, wishing you the very best

  • The idea that C/L causes "serious side effects", namely, dyskinesia, after a period of time has been debunked, here: This study demonstrated that PD patients who had not previously taken C/L developed C/L dykinesias at the same rate as patients who did.

    In any case, and especially in light of the foregoing, it is TOTALLY INAPPROPRIATE for you to suggest to any PD patient that they stop their medication, be it C/L or anything else. You are not that patient's doctor and the results could be disastrous.

  • page not found, but my neurologist said whether I decide to take levodopa or not will not cause me to deteriorate sooner or cause tardif dyskinesia should I quit.....very unclear....I think he said that these serious side effects occurred in patiants with pre-existant alzheimers and dementia.

  • Hopefully this will work:

    There was a period at the end of the previous attempt at the link which messed it up.

  • don't see how they can be so conclusive about levodopa because I have the impression that there are serious, less serious cases of pd....I concluded that much when neurologist said he had patients that benefited "for years and years" before developing problems...with medication? probably depends on area/spot on the brain that is affected. age, condition? got to be factors.

  • Well put!

  • This is what I said, well put, to. Thank goodness for the meds! People that start them early do better.

  • Thanks to all the folks who are replying to say that pain is a very common symptom of Parkinsons. It amazes me how many doctors still do not know this. If they say it is not due to PD, give them the articles that you find. It may be that we must be the ones to the educate them. They really need to keep up on their continuing education, but they seem to be offended if you suggest this. I spent a lot of money a few years ago to go to the Mayo clinic, Thinking they would have cutting edge MDs. Not so. They gave me antidepressants which made me sick. I told them I drank a glass of wine each evening , and that helped my muscles relax a bIt. That resulted in a diagnosis of alcohol abuse. I was so frustrated. Soon after that I started seeing a young female neurologist who was on top of the current information. My life has improved immensely. Sometimes we just have to keep Doctor shopping until we find a good one. I recommend young and female..

    Best of luck. Keep in touch with this group and/or others that you find. The people who actually have PD can be a great resource.

  • I had a similar experience at a medical center affiliated with a major medical school, while out in the boonies I have encountered some good docs.


  • My neurologist also told me my back pain wasn't PD but I only have it when my meds wear off, so I'll go with me.

  • Pain was the first symptoms I noticed with PD. For me, most pain can be prevented with staying on schedule with carbidopa/levadopa. However missing a dose totally screws me up and I find it very difficult to get rid of pain then. I recently fell and unfortunately experienced more pain, trying to find a way to control it. It is sometimes difficult to distinguish pain from PD or as a result of something else that can exacerbate symptoms. Good luck!

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