Please don't do what I did

[Dakota13]

Hello everyone, it is so nice to communicate with RLS friends because you all know how awful it is to deal with. I have had RLS for so many years now that it seems like forever, and I'm 74. Many times when I was freaking out because I was so tired from not being able to lie down and walking around the house, I would violently kick out my legs. I had done so much damage to my knee that I had to have a partial knee replacement. I recently slipped and fell directly on it on a tile floor. Now my knee is hurting again. More recently when I would have a flare up in the middle of the night, I would point my toes and stretch out my legs so hard that I stretched out the tendons from my toe to my ankle. It started to be very painful, but the doctors said the x-rays showed everything was fine. Finally the tendon actually snapped in half which actually made the pain less severe. So now I'm having to have surgery in a couple of weeks to reattach the tendon. I won't be able to put any weight on it for a month. It just makes me so angry that because of RLS, I have done this damage to myself. So, Please don't do what I did when you are at your wit's end.

Now I have a question. What do I to about the RLS while I can't walk? I was on .75mg pramipexole and was trying to wean off of it. I got down to .25mg when I lost my wonderful 95 year old mom and was so stressed that I couldn't deal with that and the RLS. So, I started taking .50mg which was helpful until it wasn't (augmentation). I'm thinking about going back to .75mg after my surgery and hoping that will help until I can walk again. And then trying to wean off the pramipexole.

I would really appreciate some advice.

The best to all of you during these difficult times.

Thank you, Dakota

[Hidden]

You have identified yourself what your problem is i.e. augmentation.

The solution to this is to reduce and stop the pramipexole.

You have tried to do this, but the idea that you can cope with a possible aggravation of your RLS due to the surgery by increasing the pramipexole again is completely misguided.

Augmentation is where the drug makes the symptoms worse. Increasing the dose will not relieve the symptoms it will probably make them even worse.

It depends when your surgery is going to happen. If you're currently on 0.5mg it may take you 3 months or more to wean off this dose. However, I would suggest you try doing this until at least up to your surgery.

I also suggest you start on pregabalin, if you've not tried this before. This can be effective for RLS. You can take it at the same time as pramipexole. You may need at least 150mg and it takes about 3 - 4 weeks to start working.,

After your surgery you could also ask for an opioid painkiller, this would both help you with any pain and help releive your RLS.

Increasing the pramipexole is possibly the worst thing you could do.

[Dakota13 in reply to Hidden]

Thank you Manerva. My surgery is Sept 11. I was hoping that increasing the Pram for just the 30 days. Would work—darn. So if I take pram and pregabalin would I also take the opioid painkiller After surgery?

[Hidden in reply to Dakota13]

Take everything that's offered!

[Hidden in reply to Hidden]

I have had relief with 5mg of hydrocodone. I’m not saying to take it but on REALLY bad nights it helps me get the sleep I so desperately need. But I also take the Pramipexole and Gabapentin. I’m going to try and get off the Pramipexole but I will continue with the Gabapentin since it’s supposed to be helping with hot flashes.

Good luck to you with your surgery.

[Hidden in reply to Hidden]

I’m so sorry, my reply was suppose to go to Dakota 13. I don’t know how to forward it to her. Maybe she’ll see it.

[Hidden in reply to Hidden]

She'll be notified.

[Dakota13 in reply to Hidden]

Thank you Bellamaid, I appreciate your response. ❤️

[suesweda]

I get it!! I've often felt the same way myself. One night when I was pacing the floor, I fell and broke my hip. Lack of sleep isn't the only detrimental effect of RLS.

[Dakota13 in reply to suesweda]

That’s so awful! A couple of times I’ve stood by the side of the bed and lie down on it keeping my feet and partial weight on the floor. Then I fall asleep and fall on the floor. Ouch!

[involuntarydancer]

It sounds like you may have been making fairly big jumps downwards with the pramipexole. There are some (admittedly very rare) accounts by people who have come off a high dose of dopamine agonist (pramipexole or ropinerole) without the terrible agony usually associated with withdrawal from those drugs. The common factor is that they reduce incredibly slowly so they leave a long time lapse between each reduction so that their bodies acclimatise to the lower dose and each reduction is by very small amounts (like one quarter of one pill). If I was doing it again, this is what I would do - rather than rush at it as I did.

As manerva says, I would also take everything that is offered by way of assistance/replacement to make the process easier.

Condolences on the loss of your mother. These times of loss make the horrors of RLS even more difficult to bear. Even with all that, though, I would counsel against increasing the pramipexole dose to get you through the post-op inactivity. It would be better to use an opioid if you can persuade your medical advisers to prescribe one.

[Patsy11011]

I am on slow release pramipexole (Sifrol ER) 1.25mg. I was on 2.25mg but the augmentation became severe. My local doctor suggested I lower the dose. Since I have been on the lower dose augmentation is less. I also have 1mg normal sifrol to top up if needed. You may find that after the surgery the RLS will not affect that leg. I have stretched my legs so much that I have pulled muscles! If you have trouble ask t n the doctor for opiod patch. I would worry about weaning off meds after your foot has healed

[Zedz]

Get off the pram. I did it and it was awful but life changing. My neuro put me on gabapentin and life is more manageable. He had me on gabapentin while I was weaning off pram. It didn’t feel like it was doing anything.... until it did.

[Dakota13 in reply to Zedz]

Thank you Zedz for your reply. I tried Gabapentin and it made me feel light headed and really out of it so I stoped taking it. But, I may have stopped it too soon. It really is confusing. At least I know now that I should be taking something else while I’m weaning off the Pramipexole and it should make it easier this time.

Thanks, Dakota