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    • #15328
      John Noonan
      Participant

      Hi Everybody,

      I was diagnosed with Parkinsons about 4 months ago.

      I am trying to manage my situation by being as active as possible. However, I find my efforts are hampered by  muscle aches after each bout of exercise. For example, If I play golf (badly these days) my muscles will ache through the evening and night.

      Is this a common complaint? Has anybody  found a way to reduce the muscle fatigue?

      thanks for any suggestions.

    • #15329
      Ally
      Keymaster

      Thanks for the post, John. Have you talked to your doctor about massage or stretch therapy? I drink BCAAs after I exercise to mitigate muscle aches and pains and that helps a bit. Might be something to talk to your doctor about as well.

      • This reply was modified 7 months, 1 week ago by Ally.
    • #15334
      Jean Mellano
      Participant

      Although I don’t have pain, my fatigue is horrendous.  I have yet to find something that helps me with that 🙁

    • #15335
      Jean Mellano
      Participant

      Although I don’t have pain, my fatigue is horrendous.  I have yet to find something that helps me with that 🙁

    • #17729
      John Noonan
      Participant

      Hi Everybody,

      Since I posted my original query, I started taking 500 mg of Magnesium daily. I don’t have same aches after exercise now. I can’t be sure the Magnesium solved the problem, but is worth noting.

    • #17746
      Carolyn Huggett
      Participant

      I have the same problem and tried Magnesium but it causes me very bad diarrhea. I use DoTerra Deep  cream on my legs when they are very bad but basically they hurt 24/7 unless I am working out and then they feel tingly!!! I am very tired after exercise but I try and exercise in the evening so that I sleep better. Otherwise Advil before bedtime allows me to sleep.

    • #17981
      Robert Harris
      Participant

      I have disputed with physical therapists about exercise and fatigue for Parkies. They come from a theoretical and experiential place where with normal people, exercise produces more dopamine and other hormones and gives people a “runner’s high.” My theory is that exercise depletes dopamine in Parkies because our dopamine factories and neuro connectors are not normal. Whenever I treadmill, I feel worse, not better. After asking several neurologists at conferences, I finally have begun to hear some of them agree with me.

      All this prolegomena to say that if you are greatgly fatigued after exercise, ask your neurologist if it’s okay to take an extra dose of 12.5/50–either just before or just after.

    • #17991
      Jean Mellano
      Participant

      Robert, I agree with you.  I always feel terrible after a workout and it feels like my available dopamine has been totally exhausted.   C/L seems to have only a mild effect on my symptoms.  i have tried upping my dose by one 25/100 about 30 min. before a workout and it didnt seem to help 🙁

    • #17997
      Mary Beth Skylis
      Moderator

      Robert/Jean- do you notice this fatigue after all kinds of exercise? Or do you think it’s just particular styles? This is the first I’m hearing that it can have negative implications, and I’m really interesting to see more.

    • #18004
      Jean Mellano
      Participant

      i wake up fatigued even after a good nites sleep.  i must force myself to exercise as i know how important it is to battle this beast of a disease.      next tuesday my article on exercise prior to diagnosis and potential impact will be published

    • #18019
      Stuart Maxwell
      Participant

      Hi John

      i play golf weekly and go to the gym 3 times a week. I find golf doesn’t tire me out as much as rigorous exercise.

      i used to suffer from leg cramps most nights but these have now disappeared since I learned to stretch out my muscles properly. I do this every night now regardless of whether I have exercised or not and sleep so well these days.

      Best

      stuart

       

    • #18022
      Carolyn Huggett
      Participant

      Hi,

      I experience leg pains and fatigue after exercise but the pain and stiffness builds up after no exercise so I try to work out as much as I can and manage the pain with Qigong and Tai Chi, which I teach and do every day, and Do Terra Deep Blue to rub on my legs at night if they really ache and stop me from sleeping.

    • #18023
      Toni Shapiro
      Participant

      Hi,
      I had posted something about me and exercise awhile back and I didn’t find all of the responses very helpful even though I appreciated that people took the time to respond. After reading Jean, Carolyn,John, Robert and Mary Beths posts I don’t feel so alone with my pain and fatigue and nausea during and after exercise. I am happy that some Parkies are able to exercise vigorously. I know some feel strongly that others should follow suit but the truth is we are all different with different abilities and symptoms. In spite of the pain I do in fact exercise most every day as well as go to physiotherapy but now I will only do what I can do and only for as long as I can. If I do extra I am off for 2 days where I can’t exercise at all due to pain and fatigue. I was a certified personal trainer for awhile in my life before PD so I am aware of the benefits of exercise but we need to do so at our own pace. I look forward to reading your article Jean.

    • #18029
      Jean Mellano
      Participant

      Toni, you are so right.  We are all different in how the disease manifests itself.  it is a vicious cycle for me.  i need to xercise to help improve my symptoms and potentially slow progression, however one of my worst symptoms is fatigue…. go figure.   i hope u like the article, unfortunately i have no answers, only  questions and observations.

    • #18077
      Glenn M.
      Participant

      Hello,

      John’s original post is titled “fatigue after exercise”  but describes “muscle aches” following exercise. Aren’t these actually two different symptoms? As other replies have also noted, muscle aches caused by excercising can often be cured by stretching excercises under the guidance of a physical therapist.

      I have been excercising intensively (running) for the past year following my PD diagnosis (Feb 2019, age 73). I have fortunately not experienced any fatigue symptoms. I don’t take any medication. Initially I had bothersome muscle aches and stiffness, which may have been due to PD and/or improper exercising (running without stretching).  A Parkinson’s physical therapist encouraged me to keep running and was very helpful in prescribing a series of stretches, which completely cured the aches after 2-3 months. I feel very good overall, better than I have in years.  I attribute this outcome to diligent exercise combined with the “PD honeymoon effect” (which is a wild card and can last for years as described in a recent Parkinson’s Today article – thanks to Jean!). I plan to keep on excercising as long and as hard as I can.

      Best wishes

    • #18079
      Jean Mellano
      Participant

      hi glenn i can only hope that not all of us will experience the honeymoon effect.

       

    • #18124
      Robert Harris
      Participant

      I do have one positive comment to make about exercise, or moving around, at least. Like Jean, I often wake up physically exhausted and have low points mid-morning and late afternoon. I do find, though, that if I force myself to get out of bed and walk around for a bit, I begin to feel less wiped out, and more functional, less exhausted, only the usual, chronic tiredness. I am speculating that moving around helps the dopamine to circulate and that delivers the proper messages from the brain to the muscles and back.

       

       

    • #18242
      Sheldon Massey
      Participant

      I too experience fatigue when I first wake up in the mornings.  Can barely walk…mostly a shuffle as my x-wife would call it.  I found that during the day when I went shopping, using a shopping cart, I could get around very great with little or no fatigue.  That in mind I purchased a treadmill back in the summer thinking that my be help me.  NOT.  Didn’t work.  Holding on to the hand rails helped a little but after 6-8 minutes I was completely wore out.  I go to a big motorcycle rally the first of August every year.  Yes, I ride a Harley Trike.  We camp about 3 1/2 blocks from town.  Where going into town to people watch and shop was my greatest entertainment is now a chore just to walk that 3 1/2 blocks.  Have to stop and sit down 3-4 times.  I’ve tried everything I can think of.  CBD, Vit-B12, energy drinks, etc.  No help..

      Funny sidebar.  A couple years ago I was walking around downtown and got very fatigued, decided to head back to camp.   Walking along main street, guess I was walking a little strange.  Long story short, 2 under-cover policeman stopped me for public intoxication.  Haha !!  When I explained my condition they understood but still had me do the blow text.  Laughed and I advised them I don’t drink and hadn’t since my college days some 40 years ago.  We did get a good laugh plus a ride back to camp in their vehicle.

    • #18251
      Allie J
      Participant

      Jean, I am like you in that I too wake up extremely fatigued even after a good night’s sleep. I struggle with fatigue all day every day. I do exercise and often (but not always) feel a bit better for a short while but then fatigue takes over and I must rest. If I go out too much to appointments or socially, I then need to just rest up for 2-3 days. I have to pace myself. My brain function seems to drop out when too fatigued.

    • #18254
      Mary Beth Skylis
      Moderator

      I think my Dad gets fatigued too. He usually spaces his boxing sessions out. So he’ll be particularly active for about three days a week. But I’m not sure how the rebound process is. I know that he loves the boxing community and I think his friends energize him. But he does seem to nap often when he comes home. Have you found any useful ways to gain back energy after facing fatigue?

    • #18256
      Jean Mellano
      Participant

      Allie, isn’t the fatigue brutal?   Walking 1/4 mile will waste me for rest of day.  I try to workout in morning so I can lay down in the afternoon.   Nothing seems to help fatigue, sleep, supplements, exercise, food or meds.

    • #18257
      Allie J
      Participant

      Yes Jean, I find it very debilitating. I can’t seem to keep up with demands of everyday life. I do what I can but I live alone and just keeping up with house, garden, appointments, exercise program plus finding time to catch up with friends seems impossible. I get very little done each day and on OFF days when dopamine seems low (or virtually non existent) I get nothing done. It really affects life as we once knew it. It’s a constant never ending struggle.

      Like Mary Beth says about her father, I seem to be able to function well when doing something I really enjoy, like lunch with friends but then crash afterwards and often need a day of nothingness next day. I think this is one of my most debilitating symptoms as others are mostly helped by meds at this stage.

      I have to pace myself.Fortunately it seems to me that many Parkies don’t suffer this extreme fatigue. Have you found that?

    • #18262
      Jeffery Hill
      Participant

      Regarding fatigue, I find that if I work out strenuously (2 hours) every day of the week, I need to grab a nap about every second afternoon. As for pain, I find that if I sit or lie down for any length of time, regardless of the prior amount of exercise, I am really stiff and sore in all of my joints.  I move REALLY slowly, with short strides, and feel like I’m 20 years older than I really am.   Eventually I “warm up” and the pain subsides but it’s quite frustrating to experience it so frequently.

    • #18268
      Beata
      Participant

      I try to exercise daily, 5 days a week for at least 30 minutes. Usually more. I go to boxing classes, go to the gym, walk, etc. I find I go through periods of quite a lot of joint and muscle pain, and exercise seems to help as long as I don’t push too hard. If I over exert I feel horrible, flu-ish. COQ10 has made a major difference as have pregnenalone,  vit D, and other supplements. Im taking Sinemet and Ropinerole and Azilect. I’ve been diagnosed for 4 years or so. Six months ago I went to see a naturopath to see if I could feel better. He did blood work, and recommended a bunch of supplements.  They have definitely made a major difference in my energy level as well as my sleep and sense of well being.
      additionally the naturopath found that I have hugely elevated levels of lead and mercury. I did a series of chelation sessions. I feel prettt good a lot of the time now.
      onward!

    • #18273
      Bill N
      Participant

      Fatigue has been a challenge for me but so far I have been very consistent with exercise and three times a week I usually do strength training/movement class for an hour followed up with 5000m of rowing.  After doing this I would say I feel no better than before I started.  Prior to PD I had been doing the same strength/movement class and always felt better afterwards.  I also do a one on one strength training once per week but will probably stop that soon.

      I’ve never been much of a cardio guy but my Dr said that cardio is thought to slow the progression of PD.  That’s why I added the rowing to what I had been doing all along.  For the same reasons, last year I started spinning at CycleBar.  It was very challenging at first but I noticed that following my spin, for about 2 hr afterward I would feel fantastic.  The feeling is like that of being a teenager all over again.  I’m sure it’s partly the serotonin and other endorphins but I can’t describe what an amazing feeling it is and it also seems to blow out the PD cloudiness too.  I have tried 45, 60, and 75 minutes classes and surprisingly I like the longest 75 minutes the best.  Compared to any other type of exercise, I have very little to no pain immediately after and days after.  Fatigue is not that bad considering the amount of expertise.  I really enjoy getting off the bike being completely soaked in sweat with a puddle under the bike.  It gives me a sense of accomplishment and something to celebrate and be proud of.

      My wife found a clinical trial that evaluates the neuroprotective effects of cycling and I signed up for that.  We meet with the people at Cleveland Clinic next month to get started on the one year trial.  I may have to switch my regimen to whatever they recommend if I am selected but if I’m in the control group, I’ll keep going to CycleBar.

      I tell people what I’m doing sometimes and usually they are shocked.  I’m fortunate that I can commit the time it takes to do all of it.  I feel like 1/3 of my day is committed to exercising.  I don’t know how long I can keep doing this but I can see the spinning as something I can do for a long time.

      I have found like some others have mentioned that if I sit too much, I start feeling crappy.  Usually it just takes getting up and walking around a little to feel better. The change is very quick.  I’ve also noticed that my C/L seems more effective on the days I’m moving more.  I don’t usually feel like getting moving but I always feel better afterward.

       

    • #18282
      Mary Beth Skylis
      Moderator

      Yes, I’ve heard that high intensity fitness activities do a great job of combatting PD symptoms. So it sounds like you’re on the right track! I don’t have PD, but one thing I love a lot is yoga. Many of my teachers say that you should leave class feeling better than when you entered. Unlike many of these high intensity activities, yoga is supposed to help you move your body without depleting your reserves. I wonder if some PD specific yoga might help keep the fatigue at bay?

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