Can't believe I did this

[dickwalhout]

I've had RLS for 15 plus years, mainly being treated with Sinemet (1 tab 25/100) over the years, with Ropinirole and more painfully, Pramipexole which caused severe augmentation a year ago. Three weeks ago, I had surgery for right anterior tibial tendon repair on my right ankle BECAUSE I stretched it too far in a RLS event. So now I am recovering with a large boot on ankle for six weeks minimum. Dr said I could increase the Sinemet to two tabs before bed to get some sleep and tend not to damage the surgery area because of RLS events. Not working....I sleep a couple hours then suffer severely the rest of the night. Doing internet search, it appears that may Horizant might be next step and cutting back on the Sinemet? Also, I've been on Ativan 1.5 mg per day for last 30 years. Has anyone heard that this might be part of this RLS thing? Any help would be appreciated.

[Joolsg]

Any surgery or damage to feet, bones, spine can worsen RLS.

However, increasing pramipexole is NEVER the answer.

To protect your surgery, the doctor should have prescribed a low dose opioid to cover the increased RLS and help you off pramipexole once the foot is healed.

[dickwalhout in reply to Joolsg]

Sorry you misread...I've been off the awful pramipexole for just over a year and very glad it is behind me. Dr. had me increase the carbidopa/levodopa by one pill, but like I said, it works for first half of the night but then RLS returns. He did prescribe norco but I have not used it. Maybe I should now, but I thought it was for pain and I don't have any pain from surgery at this point.

[nocturne in reply to dickwalhout]

I agree with Joolsg that RLS worsens after surgery. I had hand surgery and had to significantly increase my meds temporarily (I take Codeine-Tylenol #3). If you can tolerate opioids, I would suggest you do that to get yourself over the hump. Best of luck to you, and I hope you feel better soon.

[Joolsg in reply to dickwalhout]

Even worse. Sinemet hasn't been prescribed for RLS for well over a decade by most doctors because it has the highest augmentation rate of all Dopaminergic drugs.Opioid pain drugs work VERY well for RLS and help patients get off Dopaminergic drugs.

Morphine was the first medication prescribed by Dr Willis in 1670 London. After whom the disease is named ( Willis-Ekbom disease).

I suggest you find a new doctor who is aware of the dangers and long term serious complications of Dopaminergic drugs.

[nocturne in reply to Joolsg]

Wow, opiods in 1670! You're quite the historian. The anesthesiologist for my last surgery said that there were no painkillers for surgery before the 19th century. Your comment made me curious, so I looked up opium, and it turns out opioids have been used since 4200 BCE! Haha, thanks for teaching me something new, including the origin of the name of the disease. The anesthesiologist could learn from you! : )

[Joolsg in reply to nocturne]

This is the Chain of office of the UK President of the Royal College of Medicine, NEUROLOGY.It has Thomas Willis' portrait & name.

How ironic that the disease named after Thomas Willis is NOT TAUGHT during medical school, GP training or neurology specialisation in the UK.

There are one or two neurologists who follow the latest research and treatments, and they may pass on the knowledge to those training under them, but most will never have heard of Dr Willis.

Pain killers were always available - opium has been known about for thousands of years, but Anaesthesia ( knocking patients out during operations) was developed in the 1800s.

Colour photo

[nocturne in reply to Joolsg]

What a beautiful locket (and he was good looking, too, lol)! Thanks so much for sharing, and for clarifying anesthesia vs. painkiller. Glad I live in the 21st century for that aspect, at least!

[LotteM in reply to Joolsg]

Jools, unbelievable!

I am at a loss of words. But we somehow have to find a way to make this chain with dr Willis’ image on it work for us. Do you know how he got on there?

[Joolsg in reply to LotteM]

That is definitely in the pipeline Lotte.It is too outstandingly ironic.

They have his name & face on the chain, but neurologists still don't know how to treat RLS properly!

[Elisse3 in reply to Joolsg]

Wow i never knew Thomas Willis had a chain and locket that is amazing and very lovely. Definitely it need to be made use of. Every surgery and neuro s office should have a replica of it.

[Birdland]

Just an observation, if I’m not mistaken Sinemet is also a dopamine agonist like ropinirole and pramipexole. You could still be experiencing augmentation. Sounds like a good plan to get off of it. A lot of people find relief with Horizant/Gabapentin but usually not until they are off all dopamine agonists.

[restlessstoz]

I had surgery in January and it did cause an increase in my RLS symptoms. I went to my GP and told him how I was dancing about trying to get relief from the symptoms for hours at night and how it was risking the new hip replacement that I had just had. He agreed to increasing my current medication- buprenorphine patches, so that a. I didn't damage my new hip and b, that I could get some sleep to help healing.

I would try to get your doctor to prescribe a low dose opioid for the duration of your healing and tell them that you're risking damage to your new surgery. After you've recovered from it, then you definitely do need to look at getting off the Sinemet and try to educate your doctor by introducing them to the Mayo Algorithm and if that doesn't work, finding a new doctor who is up to date or at least willing to learn.

Good luck with it all.