Still suffering

[Littlegran]

My story is so long, so I will try to start where I am currently. An update: I have been on gabapentin (1800mg) and Rquip (4mg) for over 20 years. Just recently my RLS became unrelenting. I can't sleep, and I am so tired. Ihave been to so many doctors here in Oklahoma who really know nothing about RLS. I finally found a primary care who is trying to help. He switched my from Horizant to Lyrica (50 mg) and Klondine (2mg) and Cymbalta. I am sleeping now, but a sleep so deep it is hard to wake up. I sleep all night and most of the day. My doctor is trying to get an iron infusion becuase my ferritin is 27. However, it seems that no one here wants to give an iron infusion to an RLS patient, and I assume Medicare does not want to pay for it.

My doctor increased the Lyrica to 50 rather than 25 and the Klonodine to 2 mg rather than 1. I am having increased movement with my legs at night, although I am asleep , and my husband is sleeping elsewhere.

Any suggestions? I am 78 years old and have never experienced anything like this. I wish doctors knew more in order to help patients.

[SueJohnson]

Cymbalta. makes RLS worse for most. It certainly did me. My RLS is controlled but taking cymbalta still made my RLS worse.

Do you mean clonidine or Klonopin? If Klonopin it has a long half life of 40 hours and can make you tired the next day.

Are you still on requip?

Whether medicare will pay for the infusion varies. In some places they will. In some places they won't.

If you are having "movement with my legs at night, although I am asleep" you also have PLMS which is treated the same way as RLS.

[Littlegran in reply to SueJohnson]

Sue

I meant klonopin. I was concerned knowing it was an antidepressant, but the doctor thought I needed it for anxiety.

I am off Requip, Gabbapentin. Ativan and Halcion. I weaned off according to my doctor’s instructions. but I think it was too fast. No instructions on Gabba or Ativan.

I wish this was easier to control. It is having such a negative impact on my life.

[Ticki in reply to Littlegran]

hi hon, I just hate hearing about your agony. Is there any chance you can get a low-dose opiate ? and you just keep fighting for those iron infusions and Medicare will eventually give in. I hope that you can get a a neurologist who will help you.I’m not sure about Oklahoma And don’t give up on getting the right help.❤️‍🩹

[Littlegran in reply to Ticki]

The iron infusion was approved, and I had it this week. My feritin is 16, so I hope this helps. The doctors here know little about RLS. I have had to do my own research. I have learned more on this forum than anywhere. Thank you Ticki.

[LotteM in reply to Littlegran]

Fingers crossed it will help you, littlegran! With such a low ferritin it should make a difference. Hopefully quickly!

[Littlegran in reply to LotteM]

Thank you for your support LotteM. It really helps to communicate with those who have restless legs. I have people all the time say " what is restless legs? " It is foreign to those who do not have it, and they do not understand.

[LotteM in reply to Littlegran]

So true, Littlegran.

[SueJohnson in reply to Littlegran]

I assume you are no longer on Xanax. Klonopin has a long half life of 40 hours and can make you tired the next day as you have found out. I would suggest lunesta which is what I take for a different problem. Be sure you wean off the klonopin slowly.

Check out the GoodRx price on lunesta. I found it much cheaper than my insurance.

Did the gabapentin help at all after you were off requip for a few weeks?

Since your doctor won't prescribe opioids Another one to try is dipyridamole. You might want to discuss this with your doctor. It has helped some people on this forum and another forum I am on and has completely eliminated RLS in some. In the winter 2022 edition of Night Walkers, the publication of RLS.org there is an article by Sergi Ferre about dipyridamole discussing the effectiveness of it in a 2 week double blind placebo controlled study showing it completely ameliorated all symptoms. The study was by Dr. Garcia Borreguero movementdisorders.onlinelib... sciencedirect.com/science/a...

Take it on an empty stomach. (fats inhibit absorption) about 1-1/2 to 2 hours before bed. If you have headaches they tend to disappear or lessen after around 5 days.

[Littlegran in reply to SueJohnson]

Sue, I quit Gabapentin when I went on Horizant. Now I’m off Horizont and am on Lyrica. I have not gone back on Gabapentin. All I take now is Lyrica. Klonopin , oral iron , calcium and other meds for other issues.