Hi,
How many of you go to a pain management clinic for your RLS treatment ? The neurologists/ sleep doctors here are outdated and just not ready to listen. On the other hand, I'm not sure if pain clinics are aware of RLS or managing it. But since the long term treatment is low dose opioids, I figure I'll have to go there. Just wanted to know if your pain docs help you or how your experience has been with them.
Are you still on Requip?
On pramipexole. 0.25mg and RLS is getting worse. I've visited more than 10 neurologists all have a common theme. Increase the dose. No other medications. But I can't do it. I know all about augmentation to further throw myself down there. However, I am also not getting any sort of relief. Had some good time after IV Iron for nearly 1.5 years but the effect is seemingly gone. Ferretin 225, iron 84, TSAT-36%. This is the lowest my iron numbers have been in the last 2 years.
The IV infusion only last for awhile. Was the ferritin you mentioned recent? If not, it may have gone down below 100. I know you have tried to come off the pramipexole before and couldn't stay off it because of the withdrawal but I'm sure you realize you need to try it again. Reduce by about a quarter of a pill and take several weeks until it seems to subside, then do again. Also I assume you know you will need a low dose opioid temporarily especially as you near the end. And you are also aware that once off the pramipexole it can take a number of weeks before he symptoms become less. On the gabapentin, beginning dose is usually 300 mg gabapentin or 100 mg if you are over the age of 65. Start it 3 weeks before you are off pramipexole although it won't be fully effective until you are off it for several weeks. After that increase it by 100 mg every couple of days until you find the dose that works for you. Take it 1-2 hours before bedtime. If you need more than 600 mg take the extra 4 hours before bedtime as it is not as well absorbed above 600 mg. If you need more than 1200 mg, take the extra 6 hours before bedtime. Most of the side effects of gabapentin will disappear after a few weeks and the few that don't will usually lessen. Those that remain are usually worth it for the elimination of the RLS symptoms. According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin daily." Refer your doctor to it or print out a copy and give to him/her at
Https://mayoclinicproceedings.org/a... Good luck. You can do it! And we are all here for you.
I have a good sleep doc/neurologist. He had me on the new mayo clinic recommendation (gabapentin) many months before the paper was even published. Interestingly, my GP had also put me on gabapentin prior to my visits to the neurologist. I guess I've been lucky. I have not been to a pain clinic but a friend of mine has been to one in Seattle WA. He said he struggled with RLS for 20 years and the pain clinic was really helpful. They put him on pregabalin. The first sleep doc I went to in 2013 was a disaster and had me on 1 mg of ropinerol. Fortunately I only tried that stuff for a short time.
Hello Heatherless,As referred by my GP, I go to a Pain Treatment Center every two months to renew my Rx's (two one month Rx's) for a mild 5mg/325mg hydrocodone/acetaminophen Rx.
I take one tablet at 9 PM along with .75 mg of ropinirole and 25 mg of iron bisglycinate plus a vitamin C cap.
This regimen has kept my RLS under control for 10 years. My recommendation is to always take the least amount of opioid and ropinirole possible. By adding the opioid I was able to reduce the ropinirole from 1 mg to .75 mg. It is a hassle going to the Pain Center where they require urine and blood samples but for now the combo seems to let me live a tolerable life.
Have you thought about switching to gabapentin? Up to 70% of people will eventually suffer augmentation on ropinirole according to the Mayo Clinic Updated Algorithm on RLS which believe me you don't want because it can be hell to come off it and the longer you are on it, the harder it will be to come off it. Check out the Mayo Clinic Updated Algorithm on RLS which discusses augmentation and the latest guidelines on RLS treatment.
Https://mayoclinicproceedings.org/a...
I did try gaba
Sorry, I did try gabapentin, did not like it, and had side effects on me.That is why I keep dosage very low and if I augment on the ropinirole I can increase the opioid slightly while reducing the ropinirole. That is the advantage of the regular visits to the Pain doctor, we can tweek things until the augmentation subsides.
Again, it is best to keep dosages as low as possible, keep iron levels up, and avoid foods and beverages that trigger the RLS symptoms. This works for me, but I know anyone with this strange ailment has to find his/her own combination. Best to all.
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