Tips for controlling dyskinesias and pain

[Annie11]

Good morning.. I was diagnosed 5 yes ago, started on Sinemet 100/25 1 tab every 8 hours. I am now up to 2 tabs every 3 hrs. I have had dyskinesias for about 6 months which are new. I'm also experiencing increased pain in joints and muscle..I was just wondering how other people manage these symptoms?

[Catlou]

Yes I would like to know some tips too. Balance is way off too.

[gilesyassin]

I've been on Sinemet about 7 years and have YOPD. So of course I have dyskinesias.

To me the two are related. Dyskinesias can be quite strong for me and can cause my body to move uncontrollably, unnaturally and unpredictably for quite some time. The result is muscle and joint pain.

To the extent I can minimize dyskinesias I minimize pain.

I found that smaller but more frequent doses of Sinemet helped for awhile. You have to experiment...maybe 1 pill every 90 minutes is better than 2 every 3 hours.

You should discuss with your doctor and get an opinion on this type of experimentation before you begin. Everybody is different.

[Hikoi]

Annie

The dyskinesia is from the levadopa in sinemet and if you could find a way to decrease the amount of sinemet or spread it out with different timing it will probably improve. I also got aching knees when my dose of sinimet went above 7 tabs a day. You may find you have a threshold.

I take entacopone to increase the on time of sinimet amd so i usually take 6 or 7 100/25 sinemet a day

[BUZZ1397 in reply to Hikoi]

And you 'poked" me about pill taking when I wrote about trouble sleeping

[saf2825]

hi Annie11

I'm using cyproheptadine 4mg it turns off dyskinesia but it will make me very hungry and i can't continue using it for long time.

another thing i'm having lots of Chili peppers in my food and it decreases the need of levodopa.

[86eightynine95 in reply to saf2825]

Hot peppers cause you to need less Sinemet? I love spicy food!

[Astra7 in reply to 86eightynine95]

Peppers contain a large amount of MAO's so they help the dopamine last longer. Like azilect and also nicotine, which may be why smokers have less PD.

[Kaykaykay123]

Hi I was diagnosed a year ago and I'm the same but I've recently joined a gym and I can't believe the difference in my pain!I mainly do pilates

[Serenity_finaly-1 in reply to Kaykaykay123]

My daughter started pilates. She does not have Parkinson's but still complains about the pain after a good work out for a day or two. Have you thought of stopping pilates?

[Kaykaykay123 in reply to Serenity_finaly-1]

No my physio recommended it.I'm finding it helps with the pain in my upper back as it stretches the muscles

[Serenity_finaly-1 in reply to Kaykaykay123]

I see I still have to work on my humor. Keep up the good work

[BUZZ1397 in reply to Serenity_finaly-1]

I got it! You crazy guy.

[Beemacs in reply to BUZZ1397]

I didn't.

[weekapaw]

Hi Annie11,

I was diagnosed 3 years ago. I'm taking 2 25/100 5x pd. for over a year. I've had dyskinesias periodically in my right hand. During the last few months, it has gotten much worse and painful. I've actually been in some kind of pain almost continuously for almost a year;stiff neck down my arm, and sciatica and knees. Typically we Pders are losing the battle with gravity, and our spines have suffered, and everything connected to the spine will hurt.

I've really don't want to take opoids, or non-steroidals which BIG PHARMA tells us we need,but will screw up your kidneys, stomach etc.

I don't know where you live, but Medical Marijuana is the solution. It's not an analgesic, yet relieves the pain and heaviness in my legs.and helps me focus. THC is good for Dopamine , as well as nicotine and caffeine. We shouldn't smoke anything, There are many edibles, like cookies and gummy bears. Some states sell CBD in oil or cookies. This is only effective for Seizures.

Do this for yourself Annie11,

[Annie11 in reply to weekapaw]

Thank you DUshkow live in Alberta, Canada. I will look into it...

[Mkswfs in reply to weekapaw]

I'm trying medical cannabis too and having lots of problems. The stronger the THC I get paranoid and the higher the CBD I get what I call nerve buzz all over my body. Anyone familiar with that?

[Joycealice]

I have had PD for 15 yrs. & in the last 3 yrs. have had dyskinesia, dystonia in the rt. foot, and multiple muscle & joint pains. I go to an exercise class specifically for PD twice a week which helps with movement and muscle related pains. If there are no such classes near you, you can buy exercise CD for PD patients from various PD national organizations like Fox. etc. The dyskinesia is helped by taking Neudexta twice a day, but as the dyskinesia increased it became less effective, so I opted for the JPEG tube placement in my small intestine and I now have a Duopa Pump with carbidopa -levodopa RX cartridges

. The pump run all day and I am free from dyskinesias. For pain & stiffness I have 12 hr. Aleve. I take two and at night I take two Aleve PM which helps me sleep. I haven't found a solution for the rt foot dystonia. My drs. recommend botox injections, but I am reluctant to start those. I pray this dialogue may be of some help to you.

[Annie11]

Thank you Joycealice

Your information has helped. I will try the Aleve 12 hr.

[Cbgs]

I started Amantadine in Jan

It helps lessen the C/L induced dyskinesia

[midnightwonder]

My dyskinesia presents in my feet I rotate and bend them. I have found that if I ride my bike, ( I have a home made Thera-cycle ) , For 3 min at about 80-90 RPM my diskinesia goes away.