Fatigue

[Kwinholt]

Hi there my friends, I know there has been conversations about tiredness and fatigue. Do we think it’s from the PD medication or is it part of the disease or both. I am a very active person but the last couple of months it’s not even a tired feeling but an overwhelming whole body fatigue. It makes me a bit meloncoly and that doesn’t help either. Normally I can push through it . Does anyone take a medication to help with fatigue , like something with an energy substense , caffine ect? I’ve had PD for 5 years and have been on carbo/levodopa from day 1. Azilect as well. Any ideas? Thanks everyone.

[PNIAuthor60]

I believe the fatigue is related to cell dysfunction in that the cells do not have the energy (ATP) for our daily activities. I shared an article earlier today on this topic.

[LAJ12345]

My husband isn’t on any medication but is terribly fatigued. It seems to be directly related to stress. If he has done something stressful or if there is conflict in the house or of the kids are noisy he is worse. Holidays, change in routines, having to do something he doesn’t want to do etc make him worse. Even something enjoyable like a bridge tournament wipes him out for the next day. I have changed his diet to the healthiest I can, and he is on all of the suggested supplements eg b vitamins and mg etc but still very tired. He had been taking probiotics which I have taken him off now and I did wonder if they were making him more tired as he has been slightly better this week.

[Hikoi in reply to LAJ12345]

He is trying to get through the day on about 30% of the dopamine everyone else has. Tiring work.

[Hikoi]

I remember overwhelming tiredness at the end of the day before diagnosis. The agonist drugs added to that tiredness but levadopa gave me back my energy though in saying that it can make me tired when I first take it for a short while.

Now 10 yrs on I get very tired when my meds wear off and energetic when they kick in.

Short answer, both but varies according to individual and disease stage. You may need a meds review.

[Kwinholt in reply to Hikoi]

Thank you for your responses . I was looking at trying the high dose of B1 that everyone is talking about. I am an ultra runner and lately when I do a run I’m no good for the rest of the day. I know things will get harder and I am getting older but chose not to submit 😊

[Hikoi]

....not submitting - good on you. I think it interesting that some people find they need more levodopa when they exercise and some find they need less. I don't know any studies on that but there maybe. No harm in trying alternatives that you have checked out either. Good luck.

[Kwinholt]

Yes when I do my runs I do take extra meds. I currently on a normal day take 6 25/100 cd/ld azilect with morning dose and Comtan with afternoon doses . I do add 1/2 or a whole extra cd/ld pill with long runs ., and was advised by my Neuro that I would need to. I am a 55 year old female at 98lbs , so all the meds is concerning to me but I know if I didn’t have them I couldn’t walk let alone run . Grateful to be running !

[Divii]

Try coenzyme q10

[Pelley]

I have (reasonably) managed this irritating neurological malfunction for over 14 years. I've been through the 40 different meds and supplements/day routine.....followed by a less than normal year long DBS install. I by no means think this all qualifies me as an expert for anyone but myself. The 4th resident Neuro I (trained) told me years ago, "At this point you are your own Neurologist." Meaning simply if it helps do it. Everyone is enough different and outside of new "wonder drugs" the dosages and meds are directly related to the amount of stress, diet and timing. Most everything else is a pure crapshoot. I have found that making as simple as possible and not having unrealistic expectations is usually the best for me. I once told my most recent DBS programmer that my gait was slow. My Neuro came into the room shortly after and said "You've been with this disease for over a decade." "Maybe a little slower will have to be fast enough".

[Aleagles]

Re comment below 30% dopamine is right but also loss of serotonin which May can cause loss of enjoyment and motivation low feeling and melancholic tendencies. Raise with Doctor as a small SSRI might work ?