Muscle pain and DBS

[Sherry1960]

Has anyone experienced muscle pain in your arms, legs, etc. after DBS? Do settings have anything to do with it?

[park_bear]

You may be experiencing levodopa-induced peak dose dystonia. Especially if you have not decreased your levodopa medication since having DBS done. More discussion here:

healthunlocked.com/cure-par...

[Sherry1960]

Thank you park-bear for your insight! I have decreased some levodopa meds per my MDS but I can see it needs to be decreased again. I see her this Thursday and will ask for another decrease. Your attached helped immensely.

[jeffmayer]

Im suppose to be having it next year though I dont know if its for the wifes sake or mine are u glad uhad ot

[Sherry1960 in reply to jeffmayer]

Yes ! You have to do it for yourself, Jeff. You will be ready if it is for you. I had very painful dystonia in my feet. It was pretty much crippling at times. The DBS surgery eliminated the pain. It can take up to six mos to a year to find right the setting/ meds combo. Patience is key. I had my surgery June 2022 and I feel I am closer to the sweet spot. I won't tell you it is always a smooth transition, but it is certainly worth it.

[Crescendo]

I agree with Park-bear. This happened to my husband who had DBS surgery in 2019. His pain ended when he he was completely off all levodopa medication. He had taken it for 11 years previous to the surgery. Most people stay on a lower dose of levodopa following DBS surgery, but my husband needed to completely stop it.

[Sherry1960 in reply to Crescendo]

Thank you, Crescendo! I hope I can get completely off carbo/levo, too!

[Kwinholt in reply to Sherry1960]

Sherry, I had my DBS November 2021 and it is a transition. I was able to cut back on my cd/ld from 10 to about 41/2-5 and was able to eliminate 2 other medications. I had extremely painful dystonia and was getting Botox injections prior to DBS, while my dystonia is better , it still is an issue and feel I may need some injections again. I know DBS is not a cure but I thought things would be different. I seem to have more dyskinesia now and we’ve turned the stimulator down but I know I could never be with out cd/ld. Take care . Karen

[Sherry1960 in reply to Kwinholt]

Thank you for your honesty. We are all different in how we respond to things. Are you careful with your meds and protein?

[Kwinholt in reply to Sherry1960]

Sherry, Absolutely. I’ve had PD for 10 years and as an Ultra runner I thought I had my meds , exercise, food all figured out and I was going to tell everyone how to work their meds and what to do. This disease is a b___ch and decided it was going to show me. Don’t get me wrong, I am grateful for my life and my family and things could be a lot worse but this disease is awful. ❤️ Karen

[Sherry1960 in reply to Kwinholt]

PD is awful. It isn’t a respecter of people. And all symptoms are different.

[jeffmayer]

be honest I'm only having it because of dyskinesia I'm terrified to tell you the truth the thought of havingmy skull opened up isn't that appealing

[Sherry1960 in reply to jeffmayer]

I wasn’t ready for DBS for quite awhile. Do some research on it. The brain doesn’t feel pain and the neurosurgeon does a good job keeping you comfortable. I was 53 when diagnosed and the dystonia began to worsen. I was tired of the Botox shots and having the pain dictate my day.

[jeffmayer in reply to Sherry1960]

thanls all the