Restless Legs Syndrome (RLS) Discussion Board

Well hello everyone, it's been quite a long time since I've posted and thought I'd check in to give an update.

I moved to a different state recently and so have a new Neurologist. After talking with him at length about Botox we decided to give it a try.

It's expensive and Blue Cross won't pay. It was $1300 for 2 vials (plus $500 for the Dr's visit).

While I have RLS in the legs it's primarily in the bottom of my feet (think tickle torture).

The Dr said we would know if it worked or not within 10-14 days.

Here's the results: My legs felt great for the first 10-14 days and then not. This is the exact opposite of what the Dr thought would happen.
Not only did the "feeling" come back but it came back with a vengeance and they actually feel worse now. I don't know if it has to do with the Botox or not (maybe it's the weather).

While the results were disappointing, I'm glad I tried it. I've been wondering for years if that would be "the cure".

For anyone wondering, the shots consisted of about a dozen "sticks" in each leg and bottom of my foot. The foot shots were extremely painful.

Hope it helps,

Ray

I hadn't heard of this before and it is interesting to hear of your experience. Sorry it was so expensive (and painful) to find out that it didn't work.

Great attitude about it, Ray. What's next to try?

Thanks for reporting back to us on that. It's always good to hear what people are trying, and how it works.

Thanks for update, my Neurologist wants to try Botox for my chronic RLS and has scheduled a mid Jan procedure. This gives me time to research this. I have been taking Tramadol during the day ( 2- 50 mg tabs twice a day if needed ). and 1- 3mg Ropierol an hour before bedtime. Dr don’t like the Tramadol and refuses to prescribe the amount that has worked for 15 yrs without any increase in dosage and I was ok with this but I inquired about new procedures because FDA reclassified Tramadol as a controlled substance and I now have to go in for a office visit every other month to get a new refill.
I tried other meds to no avail so ended up going back to Tramadol. My Dr is 20 miles away so this is rather inconvenient every other month. My original Dr. told me Tramadol was not addictive and he had no problem with the dosage. He was happy it worked because he said it seems not any med works the same for everyone.
I think I am going to pass on Botox.

Memtenn60, the situation that you are probably running into is a state driven mandate that exceeds Federal rules. The FDA classifies Tramadol as a Schedule IV medication. Sch IV meds can be written for several months and can have refills. I take Tramadol ER and my doctor can phone in prescriptions to dispense 90 days of meds with 3 refills.

If you state is doing this for Tramadol, than any other treatment that will work is going to be even more onerous, e.g. DEA rules require no more than 30 day prescriptions on the other opioids and these prescriptions cannot be refilled. When I was taking methadone, I had to visit the office every 30 days for a paper prescription and the pharmacy would not fill it until 28 days after the last one. If the pharmacy was out and it was Friday, tough luck since the earliest that we could fill it would be late on Monday (assuming the distributor isn't out too, which happens).

Ray, very interesting about your feet. When I weened off clonazepam after 20 years to try DAs, what I called freezing feet and kneecaps were the major side effects. It has lessened the last few years since I went back on clonazepam and now mostly only in my feet. I would not describe it tickle but not really freezing either (although a very very hot bath helps it and RLS). I have gone to wearing UGG boots at home almost year around. My GP thinks it is more the sensation to give my feet rather than warming. I would agree because my feet don't get hot or sweat. Also when I surf in cold water it does not feel worse than it would otherwise. I have described my UG boots as sex for my feet and wear them a ridiculous amount of the day considering I live in Fl. I'm embarrassed to wear them around town unless it's cold. I do not consider it RLS but I may have to reconsider based on your post. Best of Luck in your search for relief.

Oh wow, I know this cold feet phenomen really well. This specific symptom mostly disappeared once I started taking opioids but it still can happen occasionally and was something I was experiencing more during the time I was still taking DAs.

Worth mentioning is that my feet also can feel super hot instead of super cold but this has really improved over during this year since I am using medical marijuana.