Any help would be appreciated with this painful condition…
I have had PD for 9 plus years and have tried to get help from consultant and nurse with regard to my dyskinesia. As I write the writhing in my right leg started at 10 a.m. And will go on until late. It is miserable and painful. I no longer go out for meals or the cinema as I cannot control my leg jerking all over the place. I was advised it could be too much or too little sinemet(I take 12.5/50 sinemet X2 4x a day with one selegiline. I have tried increasing but it makes things worse. I am desperate to get some rest from the constant movement.
It’s really sad to hear that you’ve been experiencing painful episode of dyskinesia, especially if it’s preventing you from doing the things you love. Unfortunately, this may be a side affect to your medication that contains levodopa and if you’re taking increased amounts, this could most certainly be the reason behind the pain you’ve been feeling. We have more information on this, along with tips with how to manage it here - https://www.parkinsons.org.uk/information-and-support/wearing-and-dyskinesia
If the pain persists, I’d recommend you consult with GP or Parkinson’s nurse about this so they can review your medication. Please remember you can also give our helpline a call to speak to one of our advisers about this for more information and support. Give us a call as soon as you can on 0808 800 0303.
I would say it’s too much sinemet can you try and space your sinemet more ,So you take 62.5mg every two hours or is 2x 62.5mg every 2hrs, have you spoke to Nero about anti dyskinesia drug’s .little an often some times work ,do suffer a lot tremors what are your symptoms
Now that’s interesting I am on a very low dose of sinemet every three hours however it was increased to 2 tabs just recently maybe it should have been kept the same but more frequently as you say little and often. I am going to try this now as I am suffering badly at the moment. Thank you for help.
