Exhaustion

[Fed1000]

Hi, I feel constant tiredness, already upon waking up. In particular the legs are "soft" and lacking in strength, which greatly affects balance and the practice of a profitable physical activity. I honestly think it's a consequence of the PD. However, I ask if others are in the same condition as me and what means they use to deal with it. Thank you.

[honeycombe3]

I think the majority of us have our weaknesses most pronounced first thing. Possibly due to the effects of meds wearing off during the night. I address this by increasing the dosage of some meds and/or changing the timing.I

A typical morning looks like this:

Wake up and take Madopar (5am - 6 am.)

30 min s later taj take another chewable Madopaar

In the next 4hours take Sinimet+ 1 Re quip 4 , 2 Tramadol ,,,2 Paroxitine, 1 Amantidine, ..and several others for different conditions.

[Enidah]

It sounds like not enough dopamine. When I'm going off my meds weakness is one of the number one symptoms.

[Fed1000 in reply to Enidah]

Thanks Enidah, I believe you are right. On the other hand, all of us pwp tend to reduce Levodopa as much as possible to avoid future complications. Unfortunately, at least in my case: B1, Mucuna and a collection of supplements do not seem able to replace it adequately.

[Hikoi]

Insufficient levadopa

[TonyParky]

Hi Fed1000,

I have the same symptoms, anytime of the day and even if I have a good nights sleep (not waking for 6 to 7 hours) I still feel fatigued. I've been to PD nurse, Consultant and my GP. The nurse and consultant say it's not my PD and my GP says it is. So I don't seem to be getting anywhere. I put it down to the PD as I thought that it was part of the symptoms of the illness.

Having had several blood tests my iron level and vitamin D were slightly low but my GP doesn't think a significant amount to account for the constant fatigue although she suggested the addition of supplements, iron and vit D, which I've been using for about a year now with no effect.

I take slow release ropinirole twice a day to hopefully stop the fall off of the drug a few hours before the next dose. I've also been prescribed Amantadine once a day but in the evening.

I am still very active physically and have a home improvement company but sometimes the fatigue gets to much and I have to go home. The other day whilst working I stopped for a coffee and just couldn't bring myself to restart working again. I just went home and rested. I really struggled for the next two days. I'm not sure if this is a progression of the PD or not.

As for means to deal with it I seem to be in the same boat as you.

Tony

[pdpatient in reply to TonyParky]

Hi Tony, I am in the USA and my doctor (Movement Disorders Specialist/MDS) told me specifically not to take Amantadine in the evening so that I don’t encounter the kind of issues you are experiencing.

Why not try taking it in the morning instead after asking your Consultant?

[GymBag]

It used to be believed that the effectiveness of Levadopa would run out someday if you did not scrimp on the amount you take. Old school and not true and still being taught. Once it is in a text book ,I guess it is difficult to change.

Take the amount of levadopa that has been prescribed that eliminates as much as it can of the P.D. symptoms including fatigue, which is directly caused by the P.D.

Then with your increased ability exercise as much and as hard as you can.

Then start paving the way for retirement as soon as possible.

There are small tests that you can do that will save you time and trouble in the future . For example any Doctor, Movement disorder specialist. nurse or Neuroligist that tells you that fatigue and or pain is not part of Parkinsons then you know that he does not know what he is talking about and you can then find someone else that does.

[Millbrook]

Hi. My husband felt the same. Constant fatigue but this also could be due to the many times he wakes up to pee at night. What helped was this antioxidant made from the spruce tree from Canada. It’s called Fountain of Life and after giving him 3 full droppers a day in his water we noticed the difference. It has strong lignans which have anti cancer properties. I started him on it last quarter of last year and that was the only new addition.

nature.com/articles/bjc2014459

The only thing I do not like is that I had to buy it on MLM but being a member brings costs to its lowest. Now that he takes it regularly it is not an issue.

Hope this helps you

[beehive23]

i use adderall....have used ritalin...and modafinil but like the adderall. hang tough.

[PalmSprings]

What Gymbag wrote made sense to me. I have followed much the same advice and it has worked for me. Pain and fatigue have definitely been part of my story, but with proper dosing and exercise, I feel pretty good.

[bassofspades]

Im also always fatigued, slow and weak. The answer i always am told is exercise like crazy, but it always always always, no matter how much I try, is counterproductive, making me feel more fatigued and very frustrated. The only thing I find that works is monster drink and the likes , but I don't want to get started on that stuff. It's probably really bad for you.

[LindaP50 in reply to bassofspades]

Exactly how my hubby feels - more tired after exercise. He can't walk distances so walking is out. Bought him one of those foot pedal exerciser which makes him feel good cause he's doing exercise and keeping the muscles going.

For pain and to loosen his rigidity he takes CBD oil. Works for him.

[Gioc]

Ciao Fed,

A volte non riuscire a raggiungere i nostri scopi nella vita ci fa sentire esausti... ma non possiamo avere il corpo di un ventenne per sempre. Ricordi i tuoi vent’anni?😀

[Fed1000 in reply to Gioc]

It's true Giò, we are so focused on the PD that we do not realize that advancing age complicates our condition, at least for the over 65 like me. I like your way of gliding over things from above, lightly. Best wishes.