legs won’t be still

[Ep0522]

has anyone been through this? Do you think it could be a worsening of Parkinson’s? Most of the day I can’t keep my feet or legs still. Help please!

[LagLag37]

Tell us a little about yourself. When you were diagnosed, what meds and/or supplements are you on?

[Ep0522 in reply to LagLag37]

I am 72 years old and have had Parkinson’s for 22 years. I am on Rytary. I only take one 61.25/245 mg every three hours. My symptoms have been under control until now. I also was just diagnosed with a bladder prolapse and suspect possible sciatica as I have low back pain and some right foot numbness. But the restless leg is at least half of the day.

Thanks for any ideas!

[park_bear in reply to Ep0522]

This could be dyskinesia. How is it first thing in the morning when you wake up versus later in the afternoon?

[Ep0522 in reply to park_bear]

Not as bad in the morning. Seems to increase as the day goes on.

[park_bear in reply to Ep0522]

Rytary is a long-acting medication. The dosage instruction says it is to be taken three times a day, only. I have reproduced table one from here, below.

accessdata.fda.gov/drugsatf...

When you take it more often you get a stacking effect - Levodopa levels increase as the day goes on. At some point those levels get high enough to cause dyskinesia, which can look like restless legs.

As you can see from the table it is permissible to take more than one dose at the three times a day frequency. Rather than try to make this change all at once you might want to drop one dose at a time, from 6 to 5, then 5 to 4 x a day. etc., and adjust dosages as necessary.

Rytary dosing instructions

[Ep0522 in reply to park_bear]

Makes sense. I noticed that most people took it this way. Why would my doctor allow me to play with it without telling me this?

[park_bear in reply to Ep0522]

Some questions exceed the ability of a mere ursine creature to answer

[Ep0522 in reply to park_bear]

LOL 😆

[Ep0522 in reply to park_bear]

Thanks for the advice park bear. Haven’t reduced very much yet, but it has made my restless legs much better.😁

[park_bear in reply to Ep0522]

Go with whatever works - Levodopa medications are strictly for symptom relief, so whatever dosage pattern best relieves your symptoms is the one for you.

[Little_apple in reply to Ep0522]

I suggest inquiring with the Restless Leg Syndrome forum. I have both

[JohnPepper]

If you have Parkinson's Disease you have to learn how to CONSCIOIUSLY CONTROL ALL YOUR MOVEMENTS. Your problem may not be PD, in which case I cannot offer any advice.

If you have PD then get somebody to assist you with the following and you will find that you can take back physical control of your body:

Stand ERECT with your assistant and interlink one of your arms with one of his/hers, with both of you facing in the same direction.

CONSCIOUSLY STAND ERECT, WITH HEAD UPRIGHT AND FACING FORWARD AND NOT LOOKING DOWN ON THE GROUND!

BOTH OF YOU, PLACE ALL YOURE WEIGHT ONTO YOUR LEFT LEG AND RAISE YOUR RIGHT KNEE SLIGHTLY AND TAKE A STEP FORWARD AND LAND ON THE RIGHT HEEL. THEN PLACE ALL YOUR WEIGHT ONTO THE RIGHT FOOT AND BRING YOUR LEFT LEG UP AND PAST YOUR RIGHT LEG, AND WALK AS FAST AS YOU CAN!

AT THE SAME TIME, SWING THE OPPOSITE ARM STRAIGHT OUT IN FRONT OF YOU, UP TO WAIST HEIGHT!

All the time you concentrate fully on what your legs and arms are doing. Never lose your concentration on your leg and arm movements, until you can walk like that as fast as you can.

When walking as fast as you can, your brain produces a substance called GDNF, which repairs those damaged brain cells. PD is the result of having damaged brain cells.

Only do that fast walking for as long as you can and stop, when you can no longer keep up that fast pace. Do not walk for longer than ONE HOUR. Walking at a slower than maximum possible speed does nothing to help your brain. It is not natural to walk flat-out, which makes the brain assume you are in trouble and are running away from it. When it is in trouble it produces GDNF to repair those cells. GDNF is Glial derived neurotrophic Factor. Glial cells produces Dopamine and, Dopamine enables you to move. The faster you move the more dopamine you require. Growth Factor is a chemical that repairs damaged cells. Neurotrophic is 'Nerve Repair'. So fast walking repairs damaged brain cells. Running does not do it because running is natural, whereas FAST WALKING is not. If you are in a hurry you would normally run. Many people think that a comfortable pace is acceptable, but IT IS NOT! It does nothing for your brain.

[Mimi828 in reply to JohnPepper]

will peddling fast on a stationary bike work, I’m not able to walk fast anywhere where I live without driving somewhere else to do that and I don’t have a car. Thanks

[JohnPepper in reply to Mimi828]

It Probably will but I have no way of prooving it.

[Windermere1]

I had serious RLS after PD was diagnosed. I researched and found TruNiagen which is nicotinamide Riboside. I take 2 x 300mg daily and it took 6 weeks to stop completely my RLS. That was a year ago and never returned

[Ep0522 in reply to Windermere1]

interesting

[Windermere1 in reply to Ep0522]

try it. It’s expensive but worth it

[CaseyInsights in reply to Ep0522]

Windermere1 observation is quite interesting.

I am seeing an anecdotal report from a user/blogger attesting to Nicotinamide Riboside (Tru-Niagen) usefulness. Link below -

raisingnad.com/tru-stories-...

Since Nicotinamide Riboside raises NAD, I am wondering aloud if - Niacin - another form of B3 can do this.

It is considerably cheaper than Tru-Niagen, and may be more accessible to most. My instincts tell me it is well well worth exploring.

[jeffmayer]

Could it be dyskinesia I get it and it's worse iny legs

[Ep0522]

thanks Jeff. That’s what park bear asked too!

[Islandhappy]

have this foot spasm as well. I take a mucuna capsule and within 10 to 15 minutes it’s goneI

[Ep0522 in reply to Islandhappy]

what dosage and brand?

[daughter-Advocate in reply to Islandhappy]

Bumping this!

[eschneid]

Hi Ep0522,

22 years, not much medication & symptoms controlled, xlnt! I'm dx'd 16 years and at the 12 year mark symptoms progressed faster to the dark side with legs tremoring faster and weakening. During off times legs feel like they won't support me and I find myself bent over almost at 90° if I'm really concentrating on a task using my hands. C/L IR still allows me to play sports, travel & be social although it's not as reliable as in the past and has me thinking more often about Switzerland and PTT-FUS procedure.

It just might be things are worsening. a little after 22 years and maybe you add a 4th dose of Rytary so the doses are closer together.

Also, LagLag suggested a vibration exercise platform which just arrived and hoping it might help the legs somehow.

C3pO

[Ep0522 in reply to eschneid]

Not sure what my doc will approve as I take 6 a day now . Are you taking amantadine and does it help?

[eschneid]

I do take 1 or 2 Amantadine/day as sometimes the dyskinesia emerges as the timing or strength of a c/l dose wasn't spot on and too much in the system....it helps me with dyskinesia.

[Jebbie12]

I believe you may have diskinesia from too much mediation. Talk to your doctor. If it is this, it is NOT from worsening symptoms

[Ep0522 in reply to Jebbie12]

Thanks Jennie!

[Ep0522 in reply to Jebbie12]

sorrry Jebbie

[Little_apple]

I believe you have RLS. It can be brought on or made worse by PD meds. I know this from personal experience unfortunately. I am in my forties.