NOVEMBER 2024 - New Members

[Rustsmith]

Saturday, November 1

Welcome to

BethyC, whose RLS is hurting her quality of life.

Quality of Life is almost always damaged by RLS. Please post a message and tell us what we can do to help.

[Rustsmith]

Saturday, November 2

Welcome to

Lfunk, who has been on pramapexole for 10 years, has augmentation and is Being weaned from it and is having withdrawal symptoms. This has affected life in so many ways. Lfunk has to stand or kneel a lot.

First off, have you tried soaking in a very hot tub? Use water that is as hot as you can stand. It helps relax your legs for about 20 minutes, which is often long enough to get a bit of sleep before the next wave hits. However, when you make the final dosage drop to zero, nothing is going to help. You will not get any sleep for next five to seven days unless your doctor prescribed an opioid to cover the symptoms. No other meds will help during this period. When you get to this point, give any remaining pills to a family member to hide because you will be in such desperate need at day 4 that you will be willing to take one to get some relief. Unfortunately, that just rests the countdown clock back at day 0. If you have any questions or just need to blow of steam during the middle of the night, we are here to help as we can. Most of us have been through it too.

[Polar Bear]

Sunday 3 November 2024

Welcome today to

RestlessinMonclova who has struggled with restless legs since teenage years (didn't understand symptoms at that time). Six years ago, began treating RLS with Requip. Through augmentation, RinM is now at three tablets per day and begun to experience "breakthroughs" 2-3 nights per week. A good nights sleep anymore is about five hours. Needs to find a better solution to treat RLS or quality of life will continue to deteriorate.

Do you mean that because of augmentation you are now at 3 tablets of requip per day? If so, the only solution for augmentation is to wean off the requip. What is your total daily dose of requip? The RLS Experts consider the max to be 1mg daily. Weaning off requip (or any DA) is not easy. It is certainly a challenge and is difficult with little to no sleep for up to a week. It's great if you have an understanding doctor who will prescribe a low dose opioid to help you through this. The way forward needs to be considered once you are weaned off the requip.
Have you had your Ferritin Serum checked and do you know what your level is. This is important because although 'normal' may be anything from 20+, us RLS sufferers benefit if our levels are up around 100. The check for Ferritin Serum level is not part of a normal blood panel and must be specifically requested.
The document in the link in my signature has been prepared by eminent RLS Experts whom we wholeheartedly trust and is a guide to the treatment of RLS. It provides for discussion with your doctor.
If you have any questions please make a post and provide details of your current treatment. Also any other medications you have tried and what has and has not worked.

[Rustsmith]

Sunday, November 3

Welcome to

ncwise, who is interested in other's perspectives on RLS. ncwise is struggling with sleeplessness.

All that you need to do to hear what others say on a topic is to post a question for us. As for sleeplessness, many of us find that gabapentin and Lyrica are the only sleep aids that help. Anything else is either a waste of money or can make RLS insomnia even worse.

[Polar Bear]

Sunday 3 November 2024

Welcome to
Crem who has RlS issues and is trying to figure out meds differences.

If you have any questions please make a post and ask. If you provide some background information regarding your rls treatment we will do our best to help you.

[Rustsmith]

Monday, November 4

Welcome to

Shoeaddict, who is tortured every single night by this horrid condition. She has tried everything and is so frustrated and exhausted.

Many new members say that they have tried everything, but that is usually because their doctor says that there isn't anything else. There is always something else to try. The problem is that many doctors are not willing to admit what they do not know. A good place to start is the document that the link in my signature points to. If you don't find something new there (like opioids), then contact one of the RLS Foundation Quality Care Clinics. The doctors at the QCCs not only treat RLS, most of them are also doing research and have new things that they can try that other doctors do not have access to. Or, you can post a question here on the board and one of us can offer our experience.

[Rustsmith]

Wednesday, November 5

Welcome to

Lreysel, who I is 58 y/o and has had RLS as early as 7 years of age. Lreysel's grandma had it and mom has it too. Lreysel has a very severe case. It's not confined to the legs, but also arms and my torso. Lreysel takes Suboxone for it but really wants to get off of it.

For those of us with very severe RLS, the opioids are about the only reliable answer ans Suboxone is one of the safest and most easily obtained. To lrean about all of your alternatives, read through the document that the link in my signature points to.

[Polar Bear]

Monday 11 November 2024

Welcome today to

frothymilk whose RLS is severe. It interferes with sleeping and at the present time it is particularly troublesome as frothymilk has a fractured ankle so can't work.

Not sure if you mean that because of your fractured ankle you can't work - or can't walk. Being unable to walk is especially a burden when suffering from RLS as this is how we often manage to deal with some of our symptoms. Difficulty sleeping is something that RLS sufferers struggle with but often we manage to improve this with the correct medication, and even non prescription methods.
If you have any questions please do post. If you provide some background history of your treatment/s and what has or has not worked for you, we will do our best to try and help.

[Polar Bear]

Thursday 14 November 2024

Welcome today to

Lwiberg who is a third generation sufferer of RLS. Her symptoms have worsened with age and menopause. Treating with lifestyle changes and low dose iron supplement at bed time. Her GP prescribed .125 mg Mirapex. Tried for 3 days but felt groggy during the day and worried about long term results after researching. Wants to learn what has worked for other sufferers

You will find plenty of information throughout the discussion board. Probably best to start with the Just Joined Forum.
Has your GP checked your Ferritin Serum. This has to be specifically requested as it is not part of the standard blood panel. You should always know your FS level and not accept being told that it is 'normal' because normal can be anything from 20+. Us RLS sufferers benefit from having our FS level up around 100.
If you have any questions please do make a post and we will do our best to help you.

[Rustsmith]

Friday, November 15

Welcome to

Wingedlion, who has had RLS for 24 years, been on pramipexole for 11; it stopped working 3 years ago but Wingedlion always got symptoms when trying to stop. Now Windged is on gabapentin and buprenorphine patch, is weaning off prami and after that the patch, which makes Winged sleepy. Since Winged is getting near the end of the weaning and had jumping legs all night last night and of course did not sleep, and today has to make a 2-hour drive and is therefore worried about safety on the road.

The final step of getting off of pramipexole is the hardest, as you are finding out. Fortunately, there is something about RLS that allows us to function after a night of no sleep that others could not possibly be able to do. I hope that your drive goes safely and that your RLS continues to prove with the buprenorphine treatment.

If you have any questions that you would like to ask, feel free to post a message so that we can try to help you.

[Rustsmith]

Saturday, November 16

Welcome to

jwojcik, who has suffered with RLS for the past 15 years. It seems to be getting worse and she is interested in understanding treatment options. She is currently take ropinerole but it seems to be losing some of its effectiveness.

If ropinerole is starting to lose effectiveness, then you are starting to augment. Augmentation is a side effect of the dopamine agonists that only hits those of us with RLS and is when the med stops working for you and starts making things worse. When you augment, it is important to get off of the med and not by switching to a different dopamine agonist. To learn more about augmentation, read through the postingis in our Augmentation forum.

As for other treatment options, read through the document that the link in my signature points to. It is a discussion of all of the various treatment options recommended by the leading RLS experts. You can also feel free to post a message with any questions along these lines and we will try to answer them.

[Rustsmith]

Wednesday, November 20

Welcome to

annette4654, who has suffered from this condition for 30 years and she would like to discuss options for relief.

You can read about the latest treatment recommendations in the document that the link in my signature points to. And you are also free to post a message with any questions or topics for discussion that you want.

[Rustsmith]

Thursday, November 21

Welcome to

tomedit, who has had RLS for a few years. It ruins his sleep and is getting worse.....

If you are talking a dopamine agonist to treat your RLS, that could be the reason why it is getting worse. Take a look at the information in our Augmentation forum or read the paper that the link in my signature points to to learn more. Or, you can post a message with any questions that you have so that we can try to help.

[Rustsmith]

Sunday, November 24

Welcome to

Tanya'smom, who is experiencing ropinrole augmentation. She has RLS symptoms when watching TV or trying to sleep and it is getting worse.

To learn more about augmentation, take a look at the messages in our Augmentation forum. Or, if you have any questions, feel free to post a message and we will do our best to try to help. Most of us have been through augmentation, so we know how you feel right now.

[Rustsmith]

Sunday, November 24

Welcome to

Lerwin29, who has been suffering with RLS since she was a young girl. She is hoping to find knowledge and direction in this. She has learned a lot through others who suffer with RLS using the Reddit app but research and hearing from the ones who have special expertise in RLS has my interest as well.

You can find a lot of information by sifting through our past discussions. The search bar in the upper right corner is particularly useful since our discussions go back several decades. Or, you can simply post a message and we will try to help you out as much as possible.