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benderet

Exercise makes me feel worse (at first) - normal?

13 posts in this topic

Hi everyone

 

I've been lurking in the shadows here for a while and I have an exercise question that I can't find much of an answer for.  First the question, then I'll give my background info for context. 

 

Everyone says exercise is a must for PD, yet I find that when I exercise, my symptoms get much worse for several hours, before returning to baseline.  Though I recognize that in the long term it may help, it's hard to motivate myself to get off the couch when I know I will feel like heck after.  This applies to any type of exercise, including just a busy day running errands etc.  I have found that I can limit the impact slightly by being aggressive with my sinemet dosing, but I haven't found a good "formula" yet.  My question is twofold - is this normal for people with PD, and if so, how do you manage the issue?

 

Now my background.  I'm 34, diagnosed 6 months ago, though I was suspicious of PD about a year before that.  Much of that 1 yr delay was because my DAT came back normal and first neuro concluded it was likely just 'in my head'.  Long story short I found another neruo, ironically not an MDS like my first one, and he made the diagnosis and started sinemet (due to problems with ICD's I can't be on the DA's nor Rasagiline, learned the hard way).  Initially I was on 3 X 100/25 immediate daily, but symptom control was not great and it did not last long enough to get me from dose to dose.  I also had some mild 'diphasic' type dyskinesias (so much for 5 years, I was dyskinesia free for 1 month :-).  By 'mild' I mean it didn't keep me from doing anything but people would sometimes stare at me.  Anyway my neuro upped the dose to 6 X 100/25 daily and after some experimenting I settled on the same dose but with a schedule of 4 X 1.5 pills instead of 6 X 1 pill.  Currently my symptoms are well controlled through the day and dyskinesias nearly gone, though the evenings are a bit tough sometimes. 

 

But enough about me, what does exercise do for you (or to you :-)?

-Ed

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I have either no tremor or almost no tremor during exercise. Afterwards my tremor usually increases somewhat for a short time and I will get muscle twitches, but then it calms down and I feel better and sleep better. Some of my best days are when I do a lot of physical labor. I never notice my tremor and I sleep like a rock.

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Hi Ed, 

 

I tire quickly with exercise even when I'm doing activities I enjoy like gardening.  My approach to movement in general is to balance it with rest.  I'm a lot older than you but I can typically do no more than 30 minutes of activity at one time - then rest.  I always time my elliptical machine workout for about 30 minutes after a dose of medication.  I can't say that exercise gives me energy but it does help with the stiffness.   The worst part about this disease for me is that I used to enjoy physical activity, getting outdoors to walk, even mowing grass.  Now I have to push myself to get out of my recliner.  I do it, though, because I'm afraid that one day I won't be able to and I'll regret having wasted the "good" years by giving in to this disease.  Best to you, Gardener

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My husband is unable to exercise, when we have tried he is exhausted and takes a full day to recover. To combat the rigidity and back aches he sees an OMT doc every two to three weeks. It isn't ideal, but trying to explain to him the importance of movement with his dementia is nonproductive. This is the best l can do to answer his needs.

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My aunt never understood how my mom would get more tired after she's walked.  She thinks exercise cures all and the more you do the better you get.  I wish that were true for everyone.  I make my mom walk every morning with me before I go to work unless we have bad weather.  It's not easy to get her moving.  I have to hold on to her arm and drag her at times to pick up her feet so most of her weight is on my shoulder and I am sure I have a torn something or other somewhere but I just keep going because she needs to keep moving.  The rest of the day she's pretty mush asleep and this has been going on for at least 5 years now.  

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My aunt never understood how my mom would get more tired after she's walked.  She thinks exercise cures all and the more you do the better you get.  I wish that were true for everyone.  I make my mom walk every morning with me before I go to work unless we have bad weather.  It's not easy to get her moving.  I have to hold on to her arm and drag her at times to pick up her feet so most of her weight is on my shoulder and I am sure I have a torn something or other somewhere but I just keep going because she needs to keep moving.  The rest of the day she's pretty mush asleep and this has been going on for at least 5 years now.

 

I try to get hubby out for coffee, trip to the store etc. everyday. He is usually so tired from this small exertion it's bed for him the rest of the day. I fret and worry so about his physical condition but what else can l do? I know full well his continuing to decline physically will come back and haunt me later, but I am tired of the fight. It will be what will be.

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I believe reading from a few others that they do feel worse after exercise.  Occasionally my symptoms are worse during exercise.  My leg will tremble and my foot dystonia acts up.

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I'm a big believer in Exercise.

 

I'd always time my meds right before we started exercising. Still a catch 22 as tremors would kick in during exercise. Just keep going and ignore the tremors, just make sure you don't drop a 10# weight on your foot.

 

I'd bicycle around the neighborhood, sometimes both arms are tremoring so bad I had a hard time holding handle bars. Worst was coming up to a signal light, stopped and fell over. Not good.  So it is like when I exercise the dopamine gets used up. For thirty minutes after I stopped, it was shake city. Irony is after that I was good to do something like soldering.  

 

These days still working on getting the DBS dialed in. My tremors are not as bad, more like my symptoms are smoothed out without the peaks and valleys.  Still have tremors, but can use the keyboard when shaking (previously - not possible until I had my meds).

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Exercise definitely helps with my stiffness. I usually rest for a bit after coming home and showering but I'm not wiped out for the rest of the day. I do feel like my sinemet gets "used up" more quickly so I notice it starts to wear off sooner during the cycle where I've exercised. So if I usually go 4.5 hours between doses, I need to shorten to 3.5-4 hour in order to not go too far "off". I've learned if I go too long between it takes longer for sinemet to kick in which can really throw a wrench in my day.

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Hi Ed,

I am using exercise as my main treatment of symptoms right now but agree with you...at times my symptoms are worse, especially during a workout. I do not have a typical resting tremor, just a random "one & done" type tremor but during my workouts I tend to tremor more often or have what feels like an internal tremor. I have to say that my rigidity does tend to feel better. I'm liking step aerobics, Pilates & yoga right now. So though it doesn't seem to be all around helpful my motto right now is..."I'm gonna keep moving so I don't stop" ;)

 

Melissa

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The point of the exercise isn't to address the current symptoms (and in fact for most of us the exercise is be difficult and can exacerbate current symptoms). The stiffness I felt after a work 3 years ago is no where near how stiff and achy hurt I feel after I work out today. My tremor goes crazy while I work out, and the fatigue hits like a brick shortly after too.

 

BUT, the physical act of exercising actually has the therapeutic benefit of resisting neurodegenerative diseases. When you work out hard, to the point of actually tiring yourself out, there can actually be measurable increases in dopamine in the stiatum. Regularly working out, even moderately, has been prove as one of the more effective ways to enhance the plasticity of the central nervous system. That means it it makes your brain better able to adapt and resist the effects of PD. This isn't sales pitch type stuff from an infomercial on late night TV, its scientifically documented fact. 

 

So, yes it sucks. It can hurt, and I'd agree that it can even cause symptoms to flare up. But, if that means my current symptoms flare and I slow down the progression of new ones, I'm all for it. 

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Yes, you get temporarily worse as your body processes the excess neurotransmitters created by the exercise, but are overall better for it.

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