SEPTEMBER 2022 - New Members

[Rustsmith]

Thursday, September 1

Welcome to

bjanec, who has had RLS for 40+ years, bjanec's parents had it, and several relatives suffer from it. bjanec experiences it every night and has taken several different prescriptions. Mirapex was the only one that worked, until Augmentation. bjanec dreads evenings and suffers until the wee hours of the morning, or sometimes all night long.

Have you been able to come off of Mirapex yet? Now that you have augmented, have you tried the opioids since that is the class of treatment that is most reliable (yet the biggest issue for doctors)?

If you have any questions, feel free to post a message and we will do what we can to help you get a good night's sleep.

[Rustsmith]

Friday, September 2

Welcome to

nylass, who has suffered from RLS for many years. However, it is a mid case. Her mom and maternal grandmother also had RLS. She experiences RLS at night which makes for an interrupted sleep.

One of the properties of RLS is that it primarily hits in the evening and/or at night. If you have any questions that you would like to ask, just post a message.

[Polar Bear]

Saturday 3rd September 2022

Welcome to

RLSsteve who has RLS and it affects his sleeping. RLSsteve is trying to find a cure. no luck so far.

It is the lack of sleep that generally makes sufferers seek help. If you make a post and tell us what you have been doing to treat your symptoms including what medications you have tried and have or have not helped, this will give us a starting point.

[Rustsmith]

Saturday, September 3

Welcome to

Elsawaller, who says Ugh! It is so depressing. One doctor says it comes and goes but people report having it for years. Glad I'm already 68.

Your doctor (like most) is not very familiar with RLS. There are mild cases that may seem to come and go, especially if the individual is getting enough iron, but for those of us with moderate to very severe RLS, it not only is something that we have to live with, but it also tends to get worse with age.

If you have any questions, feel free to post a note and let us know how we can help.

[Rustsmith]

Saturday, September 3

Welcome to

ehaning, who is looking forward to benefitting from and contributing support and education for fellow sufferers of RLS.
ehaning has had RLS for a lifetime ..with the years from 40 or so on, and that,s is about when ehaning was diagnosed. Since then has progressed to a “difficult case” with augmentation and is trying to find an acceptable solution. ehaning is very concerned about the insomnia that is concurrent with RLS and how it is affecting both life and longevity.

With respect to a solution for augmentation, the only thing that you can do is to get off of dopamine agonists and never go back. Most of us end up taking low dose opioids, but the current political climate is making that difficult since most doctors are afraid to touching us. Some have milder cases and can get by with gabapentin or Lyrica, but this is not something that works very often.

For those of us on opioids, the primary problem is getting the prescriptions. They are very effective for treating RLS and if you have issues with the side effects on one, then you simply try another one.

As for insomnia, research at Johns Hopkins about 10 yrs ago found that insomnia is actually just as much a part of the physiology of RLS as are the movement issues. Unfortunately, most sleep aids either make RLS worse or are ineffective.

If you have any questions, we would welcome any comments or posts that you care to make.

[Polar Bear]

4 September 2022

Welcome to

Cece who has had RLS all his/her life. Cece is taking medications that help but would like to hear of other success stories.

We are happy to hear that your medications are helping. The members here are usually sufferers who have had difficulty. Those with mild RLS who are having successful treatment don't often need to seek further support. As you read through the posts you will see what is working, or not working, for many. Please feel free to join in any threat, or start your own thread.

[Polar Bear]

4 September 2022

Welcome to

Nonna04 who says...... "I've "had" RLS since my 40's and have taken iron and now Requip and it is getting worse, ie, symptoms more regularly and also earlier in the evening. I'm worried about augmentation. I'm looking for other ways to deal with it, ie, diet. Have tried acupuncture and it was amazing, just expensive and time consuming. Looking for support."

Taking Requuip and getting worse is very much a red flag for augmentation. If you read the Augmentation Forum you will see how other members have been coping. Please feel free to ask any questions by joining a thread, or starting your own thread and provide some background information on your RLS journey.

[Polar Bear]

4 September 2022

Welcome to

Volyakker who has had RLS needing medical treatment for more than 20 years. He has been on ropinerole for more than 20 years and is now experiencing augmentation. He gets too little sleep. He seldom sleeps through the night in the bed with his wife. She probably benefits because Volyakker says he snores.

Augmentaton is very likely on ropinerole. Please start a thread giving background information on your treatment. This gives us a starting point.
(As an aside, regarding your snoring, have you had a sleep test to check for sleep apnea. I was found to have sleep apnea and wearing the mask stopped all snoring.)

[Polar Bear]

4th September 2022

Welcome today to

Kaybee who has been suffering from RLS since childhood. It is now to the point where dosage is at 4mg of Ropinirole and ready to try anything.

Ropinerole at 4mg is way too high. The experts will now say that 1mg should be the max daily dose to try and avoid augmentation. Please make a most and tell us of your RLS treatment, what medications have and have not worked for you. We can take it from there and try to help. Please do post.

[Polar Bear]

5 September 2022

Welcome to

Skeeter1 who has restless legs and is wanting to know ways to deal with this.

You will find a lot of information in the Just Joined Forum. Please feel free to post and to ask any questions. We want to help you.

[Rustsmith]

Friday, September 8

Welcome to

Seekingstillness1, who is looking for support and information on effective strategies for managing this chronic 20 year condition which has impacted the quality of life.

We would be happy to help you out as much as we can. All that you need to do is post a note to give us an idea of what you are (or have been) using to manage your RLS. That way, we know where to start with out suggestions.

[Rustsmith]

Saturday, September 9

Welcome to

elbowes123, who has been on medication for 20 years with dosage needing to be increased periodically. elbowes is am now experiencing leg pain and this is affecting sleep. Elbowews is reluctant to increase medication any further but feels that is the only option.

Are you currently taking one of the dopamine agonists (pramipexole, ropinerole or rotigatine)? If so, you could be starting to experience augmentation. If that is the case, increasing the dose of your medication will only help for a short time and then it will come back even worse. In that case, you will need to get off of dopamine meds (not switch to a different one) and switch to a different class of medication. Most of us end up on a low dose opioid, which works well but carries a lot of baggage in the form of monthly prescription refills and doctors that are truly scared or writing the prescriptions.

[Rustsmith]

Friday, September 9

Welcome to

Dale3, who says that marijuana is fantastic for RLS but not sleep neuroclonus.

Many of us have found that THC is not very effective for controlling the need to move side of RLS but that it does help with the insomnia side.
Feel free to join in any of our existing discussion threads, or start a new one yourself.

[Rustsmith]

Saturday, September 10

Welcome to

violetta, who cant sleep and cant stay awake.

It is ironic, isn't it? If you would like some suggestions for regaining control of your RLS, just post a note and give us an idea of what you are currently doing so that we will know where to start.

[Polar Bear]

Tuesday 13 September 2022

Welcome today to:

IgloooInMaine who says "" I have suffered with RLS all my life. I maintain that for severe sufferers it is the worst disease compared to the stupidest name given to it. I had a dear dear friend with ALS, and I told them with ALS you know you are going to die…with RLS you just wish you were going to die. I believe I am in the upper 1% of sufferers, based on my experience, doctors, neurologists, and forums.""

I suggest you make a post giving us the details of how you have been managing your symptoms including what medications you have tried and what has or has not worked for you. Have you had your ferritin serum checked and what was the result, (very important) not just accepting 'normal', which is not normal for an RLS sufferer. This will give us a starting point to try and help you.