AUGUST 2022 - New Members

[Rustsmith]

Monday, August 1

Welcome to

Needsrlshelp, whose RLS has taken over her life. She doesn’t get any good sleep. Her legs keep her up all night or if she gets sleep it is because she took so much medicine she is basically drunk and passes out and wakes up groggy and miserable the next morning. She is praying this site can help her.

We should be able to offer you some suggestions to discuss with your doctor on how to better manage your RLS. First, we need to know more about what meds you are taking so that we know where to start with our suggestions.

[Rustsmith]

Tuesday, August 2

Welcome to

legdancer, who has RLS and has learned to live with it...

If you have any questions or would like some suggestions for improving the control of your RLS, just post a note and let us know how we can help.

[Rustsmith]

Tuesday, August 2

Welcome to

LucyCat, who has RLS every night without exception. It is hard to relax and sleep.

We may be able to offer some suggestions on how to regain control of your RLS so that you can relax and sleep. All that we need is for you to post a note to tell us what you are currently doing to manage your symptoms.

[Polar Bear]

Wednesday 3rd August 2022

Welcome today to:

Nanniefarmer whose RLS has become more severe in the past few years to the point that she can't get a full night's sleep.

Sleep is one of the major issues that first drive an RLS sufferer to seek help. If you will make a post n the Just Joined Forum detailing how you have managed your symptoms in the past. Include any medications that you have used that have or have not worked, also over the counter medications.
Has your GP checked your blood iron levels in particular, your Ferritin Serum. This is important.
We look forward to reading your post and would hope to make suggestions to help with your lack of sleep.

[Polar Bear]

Friday 5th August 2022

Welcome today to:

Katycunningham who has RLS. Her mom has RLS. Katty wants to be proactive in managing it before it worsens.

I suggest you make a post in our Just Joined Forum, either joining a relevant thread or by starting your own thread. Probably best starting your own thread. In order to help you we would like to know more about how you manage your symptoms and what has or has not worked for you. If you provide as much information as possible we will do our best to make positive suggestions.
One thing you should do is make sure you know your Ferritin Serum blood levels, you want them to be up around 100. This isn't done in standard blood tests so make you that you request it.

Please note: I am assuming that your User Name is your real name. If so you might wish to consider changing it for privacy purposes. This is a Public Site and anyone can read it.

[Polar Bear]

Friday 5 August 2022

Welcome today to:

Donnamac who has had RLS since a teenager; now turning 75 in September. Donna has taken every drug that is known to work. They all eventually stop. Now taking Mirapex. When it stops working, she fears there is not another drug she can take. Now taking a combination of gabapentin and pramipexole ER (generic Mirapex). Donna is terrified about there coming a day when no drug will work on my RLS.

This is something many of us fear but we often say .... there is pretty much always something else to try. Often a combination of 2, or even 3 medications. Wouldn't be the first time I sat with my feel and legs in a bucket of icy cold water, 15 minutes is often enough to calm my symptoms. Please do post in the Just Joined Forum and give us a full history of your various medications and the dosages. If you don't know your Ferritin Serum blood level please ask your GP about having it checked. And please do tell us if you have ever tried an opioid medication.

[Polar Bear]

Tuesday 9th August 2022

Welcome today to

mkl whose RLS has progressively gotten worse and the current medication is not working. mri can't sleep and needs help.

mkl that's what we are here for, to do our best to make suggestions that will improve your situation. Please make a post by joining a relevant thread in the Just Joined Forum. Or even better, start your own thread. Tell us what medication you are taking, what you have already tried, the dosages. what has or hasn't helped. With this information we have a starting point to work from.

Just to add, have you had your blood ferritin serum checked, this isn't usually done in general blood works and has to be asked for. It's important to know this as the level should be up at 100 for an rls sufferer even though the normal is 20.
We look forward to reading your post

[Rustsmith]

Wednesday, August 10

Welcome to

bonniewright, whose RLS keeps her awake and prevents her from falling asleep, most often in the evening. She knows to stay away from sugar in the evening. She wants to know more about this condition.

We would be happy to answer any questions that you have or suggest steps that you can take to bring your RLS under control. All that you need to do is post a note to let us know where to start.

[Rustsmith]

Wednesday, August 10

Welcome to

slateman, whose RLS has destroyed slateman's quality of life. Slateman has been living with this condition for over twenty years but it's only been the last two that it's become a daily occurrence and was only diagnosed two months ago. Slateman has severe augmentation resulting in approximately 5 hours per day that are symptom free.

Two months of treatment is a short time to cause augmentation, but it happens. If you need suggestions about what to do at this point, just post a note and we can try to advise you about what you can do once you have augmented on a dopamine agonist.

[Rustsmith]

Wednesday, August 10

Welcome to

QuietMind, whose RLS has become a dominant issue in life, sneaking up slowly over several years until it has gotten to the point where it affects QuietMind 24/7. QuietMind has tried many solutions - both pharmaceutical and otherwise - in hopes of removing RLS from life. Some solutions have mitigated symptoms, but QuietMind ism still on the search for a real cure.

We are all still on the search for a "cure", although that may involve different treatments for different people. If you have any questions or would like suggestions on new things to try, just post a note and give us an idea of where we can start.

[Rustsmith]

Thursday, August 11

Welcome to

SueSweet, whose husband has severe augmentation after taking Mirapex for 30+ years and she looking for tips as how he can manage it, especially tips that do not involve additional medications.

The first thing is that he needs to get off of Mirapex, but that is going to be very difficult. There are two approaches. The first is to taper his dose down to no more than 0.25mg, but that may involve a number of sleepless nights and the worst RLS he has ever experienced. At that point, he can "safely" stop taking it, but he will experience six or seven nights with no sleep (no naps or even snoozes) for the entire week. By day 4, he will be begging for relief, so hide any remaining pills. His RLS will also be through the roof during this period. He will then slowly start to get increasing amounts of sleep over the next couple of weeks. He will return to his "normal" baseline RLS after about a month.

The second approach requires about six days worth of opioid pills that will cover the Mirapex withdrawal. But getting a doctor to prescribe these pills is tough, unless you find one who is familiar with treating patients who are very augmented. After the week (which will go fairly easily, especially compared to the cold-turkey approach), he will once again be back to his baseline and he can decide how he wants to manage his RLS.

Since you mentioned "do not involve additional medication", there are two suggestions. First, it is very important that he not allow his doctor to switch him to a different dopamine agonist (ropinerole (Requip) or rotigatine (Neupro)) since these meds will cause him to quickly augment again. Second, he may require some form of treatment for his RLS after he is off of Mirapex and recent research is hinting that augmentation causes permanent changes in our brains. There are no "natural" treatments that have been found to be effective and that is especially true after augmentation. So, be prepared for a switch to a different med (hopefully he can get by with gabapentin or Lyrica and will not require low dose opioids like so many of us).

[Rustsmith]

Friday, August 12

Welcome to

GwenC, who has RLS and want to ensure that she keeps up to date on treatments.

You are welcome to search through our files. You will find a number of research publications either summarized or linked in our General Topics Forum at the top under Published Research. But a summarized description of the latest treatment info can be found in this publication by most of the US based RLS experts: https://www.mayoclinicproceedings.org/a ... 0/fulltext

[Rustsmith]

Friday, August 12

Welcome to

LILLY, who is in augmentation and is trying to transition from ropinerole to Horizant. But she doesn't think that the Horizant is working at all.

Unfortunately, Horizant is not strong enough to cover the withdrawal symptoms of ropinerole. You will either need to suffer through the withdrawal period (at least a week of zero sleep after stopping, not even naps) or else convince your doctor to provide you an opioid prescription that will last for the transition period. Take a look through our Augmentation forum to find out more.

If you have any questions, feel free to post a note and ask whatever you need.

[Rustsmith]

Sunday, August 14

Welcome to

bettro57, whose RLS keeps bettro from sleeping and aggravates to no end. Sometimes, bettro is up until 3-4 in the morning.

We can all relate to those sleep issues, including the 3-4AM. If you have any questions or would like some suggestions to improve your sleep, just post a note to give us an idea of what you are currently doing to manage your RLS so that we will know where to start.

[Polar Bear]

Monday 15th August 2022

Welcome today to:

Fly007 - who has have been dealing with RLS for over 15 years and has been on Mirapex for all of that time with doses constantly increasing over the years up to 3.75 mg of extended release. A new Dr. recognized my signs of augmentation and that the current dosage was almost 4 times the FDA recommended so now has Fly007 working with a sleep specialist. They are currently trying new medications (Horizant) and weaning off of Mirapex. Fly007 is glad to have found the RLS society and all the great information, seminars and videos.

Although your Mirapex is almost 4 times the FDA recommended dosage it is actually more times than that, what is recommended by the leading RLS experts. I wonder how successful Horizant will be at weaning off such a dosage of Mirapex.
If you will start a thread in the Just Joined Forum telling us a little of your RLS journey and any medications you may have tried as well as the Mirapex, we will have a starting point to try and help. Also, do you know your blood Ferritin Serum Level, not normally done in a standard bloods check. It needs to be up around 100 and not the usual 20 which is accepted as normal.