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[Starkloph]

I joined the RLS Foundation some time ago in order to find information. Yesterday I joined the BB for the first time. I had knee replacement surgery with a spinal block on February 13, 2017 and my RLS started soon thereafter. I can not help but make a connection between the spinal block and the RLS. Right now I am taking 4 mg of Ropinirole an hour before bedtime - it makes be drowsy and hence helps me to get to sleep. I apply MagniLife cream to both legs at bedtime. It works about 90% of the time. I also take the MagniLife pills. If I am still having RLS I ride my recumbent bike for another ten minutes or so or until I am so tired I can sleep. I find using the bike for 30 minutes in the early evening also helps. I have bought a podium from which I can read or watch TV while standing when I can not sit due to the RLS. In reading the stories of others with RLS I realize that my situation is not as severe as many. However, it is still frustrating, life changing and a constant worry about getting to sleep. This morning I awoke at 5:30 with RLS and got up because it was useless to remain in bed. Thankfully this does not happen every day. Typically my RLS starts about 2 p.m. every day and then just grows until bedtime. I am seeking further information and perhaps a doctor/program that really understands RLS. My Ferritin levels are good but my "Total Iron Binding Capacity" (TIBC) is low.

[Polar Bear]

Starkloph, welcome to our Discussion Board. You had knee surgery with a spinal block.... it has often been mentioned by sufferers that they felt their RLS started after back surgery but I feel that any surgery could have an effect.

About your Ropinerole, 4mg is a very high single dose. When it first appeared it was considered that 4mg of Ropinerole was a max daily dose but many of the top RLS experts would now say that this is much too high for RLS and can lead to augmentation. They recommend a max of 1mg Ropinerole daily.

How long have you had RLS.

Did you titrate up to 4mg Ropinerole or start at the single dose of 4mg. How long have you been taking Ropinerole.

Your Ferritin is good ??? Were you told it was good, or do you know your Ferritin level to be good with regard to RLS.
A level of 20 can be considered good but for an RLS sufferer you are wanting your Ferritin to be up around 100. A higher Ferritin level is a building block in the fight against augmentation.

Have you looked at the Augmentation section, take a look and see if any of the symptoms of Augmentation might apply to you.
Augmentation is when the DA medication (Ropinerole is a DA) stops working and actually makes your symptoms much worse, i.e. more severe, come earlier in the day, spread to your arms The higher the dose Ropierole you are taking the more likely augmentation is likely to happen.

[Starkloph]

Regarding the Ropinirole - I started out at 1 mg and slowly worked up to the 4 mg. The literature that I have seen, and that my Doctor goes by, shows 4 mg as the max for RLS. 1 mg was like taking nothing. My Ferritin on 11/14 was 211.5 ng/ml, and on 10/29/18 it was 261.3 ng/ml. I have had diagnosed RLS since April 2017. My surgery was in February of that year. I may have had RLS between February and April but it was only in April that I went to my Doctor.

[badnights]

Hi Starkloph
How's it going? Have things gotten any worse or are they about the same?

However, it is still frustrating, life changing and a constant worry about getting to sleep.

That is for sure. My house gradually changed as I moved all my books to the kitchen counter so I could stand up to read and eat, I added a shelf on legs to my desk so I could stand up at my computer, and I was up all hours of the night. It sucks to think that this has become your new "normal".

Can you remember back when you first went to the doctor for this problem, what time of day were the symptoms starting? The fact that they're now starting at 2 pm is worrisome.