NOVEMBER 2021 - New Members

[Rustsmith]

Wednesday, November 3

Welcome to

maulsby, whose RLS affects the ability to relax in evenings and to sleep at night.

We would love to offer you some suggestions for improving control of your RLS so that your evenings and sleep are improved. All that we need is for you to tell us a bit about what you are currently doing for your RLS.

[maulsby]

I have been taking pramipexole since 2006. Due to augmentation, I am currently taking 2.5 MG in the evening. That dose works about 80% of the time.

I live in the Dallas, TX area and have been unable to find a medical professional that understands RLS. The professional i did identify wanted me to undergo a sleep test. I don't have a sleep issue. If the pramipexole works, I sleep.

I did try gabapentin with pramipexole taper. It worked briefly, but not long term. I went up to 1200 MG of gabapentin at night with 0.5 MG of pramipexole, but had breakthrough of RLS symptoms.

I am concerned that 2.5 MG of pramipexole is affecting my brain in a detrimental way.

[Rustsmith]

Thursday, November 4

Welcome to

suesparta, who has RLS or some version of it. She wakes every night between 2 and 4 am and is so restless that she can't stay still for minute! She is exhausted not sleeping!

That certainly sounds a lot like RLS, but it is something that you should discuss with your doctor so that you can get a blood test to check your iron (and ferritin) levels. Please feel free to post a note with any questions that you have so that we can try to help you out and to make sure that you go down the right path with starting treatment.

[Rustsmith]

Sunday, November 7

Welcome to

Brookali, who have RLS and Brookali's father has severe RLS. They need to read about what’s working for others.

If you have any questions or cannot find what you are looking for, just post a note and ask.

[Rustsmith]

Wednesday, November 10

Welcome to

mimckeon, whose RLS interferes with sleep unpredictably; sometimes comes on during the day, and exercise sometimes helps and sometimes does not. Mimckeon's RLS seems to be associated with swelling in foot and calves, but not clearly so. Very mysterious condition!

Yes, it is a very capricious condition. If you have any questions, just post a note.

[Rustsmith]

Saturday, November 13

Welcome to

Latsha, who has had restless leg syndrome for 30 years. Two weeks ago he started taking vitamins and it is gone. He would like to share his story in hopes of helping someone else.

We would love to hear the details of your story. Just post a note and tell us more.

[Rustsmith]

Saturday, November 13

Welcome to

madislander, whose RLS has left her searching for answers, only to encounter more questions - from herself and her doctors. She wants to join to be surrounded by people like herself.

We would love to be able to answer some of your questions. All that you need to do is post a note and let us know what we can share.

[Rustsmith]

Monday, November 15

Welcome to

Jack1954, who has had RLS for years and it is greatly affecting his life. He hates it!

I think that all of us feel that way. If you have any questions, just post a note and we will do our best to answer them.

[Rustsmith]

Tuesday, November 16

Welcome to

chwhar2, who has had RRL for 36 years and is now 53. chwhar2 is now in severe augmentation from high doses Requip and the neupro patch and is currently tapering Requip, then neupro. Scared and worried!! chwhar2 is using an opioid to help.

You are fortunate that your doctor has provided an opioid to help cover the withdrawal symptoms. It will be much easier than it would be without. If you have any questions, just ask. Most of us have been through dopamine withdrawal, so we know what you are facing.

[Rustsmith]

Wednesday, November 17

Welcome to

Lindajoy, whose RLS has made it difficult for her to sit and relax. Too little or too much exercise makes it worse. It is a great frustration.

RLS can be a balancing act. Too much or too little of many things seems to set us off. If you have any questions, just ask.

[Rustsmith]

Friday, November 19

Welcome to

walking dead, whose pregnancy was torture. Being so tired but not able to sleep because every time you are just about to go under the tickle monster shows up and her paralyzed leg kicks uncontrollably. She didn't know that there was even a name for it let alone medications as her mom who also suffered called it the eeby jeebies.

We would love to answer any questions that you have. All that you need to do is post a note and let us know what we can do to help.

[Rustsmith]

Monday, November 22

Welcome to

Jerrychina1, who is on a heavy dosage of Mirapex2.25 ER and the side effects are effecting his spouse, family and friends. The zoning out and falling asleep along with a new gambling addiction. He needs help finding an alternative.

The gambling is a side effect that indicates that you need to see your doctor ASAP. Getting off of your dose of Mirapex (the max dose for RLS is 0.5mg) is going to be difficult unless you can convince your doctor to prescribe an opioid to get you through the Mirapex withdrawal. If you would like more discussion of the process of getting off of Mirapex or alternative meds once you are free of it, just post a note and we can tell you more.

[Rustsmith]

Tuesday, November 23

Welcome to

GlacierLily, whose RLS has changed her sleeping patterns and reduced the amount of sleep she gets each night. It has exhausted her physically and mentally.

The reason that most of us first approached a doctor about our RLS was to get relief from the sleep problems. We can probably offer some suggestions to improve your sleep if you would be willing to post a note and tell us a bit about what you are currently doing to manage your RLS.

[Rustsmith]

Wednesday, November 24

Welcome to

tham_see_wing, whose RLS has affected quality of life because of lack of rest.

If you would like some suggestions that could improve the quality of your rest, just post a note to tell us a bit about what you are currently doing to manage your symptoms.

[Rustsmith]

Sunday, November 28

Welcome to

Ouisconsin, whose RLS has been effectively managed with Pramipexole for six years or so, but now Ouisconsin may be experiencing augmentation and would like so see how others are dealing with that situation.

If it is augmentation, the only way to deal with it is to get off all dopamine agonists and switch to a different medication. This is very difficult since dopamine agonist withdrawal will result in zero sleep for about a week and the worst RLS you have ever experienced - unless your doctor is willing to prescribe an opioid to get you through the withdrawal period. If you have questions, just post a note and ask.