SEPTEMBER 2024 - New Members

[Rustsmith]

Tuesday, September 3

Welcome to

Kavi1953!, who has had RLS for a number of years and thought she was under the care of a good neurologist. But as it is getting worse, She feels like the doctor doesn't really care. Kavi listened to a podcast recently with an expert--from the midwest she thinks--who had so much to share and really seemed to care.

Unfortunately, even many neurologists are not very knowledgeable when it comes to the proper ways to treat RLS. Take a look at the document that the link in my signature points to, highlight a couple of portions and then share it with your neurologist. The reaction that you get will tell you whether you need a new doctor or if this one does care.

In the meantime, if you have any questions, feel free to post a message so that we can try to help you out.

[Rustsmith]

Friday, September 6

Welcome to

IreneT, whose RLS causes physical and emotional distress daily, making it difficult to participate in individual or group activities, especially in the late afternoon and evenings. Also, makes it impossible to sleep without medication.

If you have any questions that you would like to ask, especially about sleep meds, just post a message and let us know how we can help.

[Rustsmith]

Saturday, September 7

Welcome to

Lisbeth, whose RLS has recently gotten much worse although she has suffered from RLS for many years. It often disturbs her sleep.

There are two possible explanations. The first is the RLS tends to become more severe with age. However, if you have been taking a dopamine agonist (pramipexole, rotigatine or ropinerole) for years, then you could also be starting to experience augmentation, which is where the medication stops treating your RLS and starts to make it worse. If you would like to tell us what you have been doing to treat your RLS, we might be able to provide you with more information. All that you would need to do is to post a note telling us a bit more.

[Rustsmith]

Saturday, September 7

Welcome to

kdelcamp, who has experienced RLS for about 20 years, but in the past month it’s become unbearable. kdelcamp wants to connect with people who have also experienced this.

Unfortunately, RLS becomes worse with age. However, it can also get worse if you are starting to experience augmentation due to taking a dopamine agonist class medication for many years. This includes both Mirapex and Requip and is something that your doctor may not be familiar with. If you post a message and tell us a bit more, we may be able to provide you with guidance.

[Polar Bear]

Sunday 8 September 2024

Welcome today to

JILL Colorado who is a long time RLS sufferer. Currently experiencing severe symptoms, any time of day or night, and several times during the day and night.

There are several reasons why this could be happening to you. It could be just that your RLS is progressing and your medication (if any) is no longer covering your symptoms. You could have started a new medication for another issue which is triggering your RLS.
If you are beng treated with a Dopamine Agonist medication such as pramipexole or ropinerole it is very possible that you are now augmenting and will need to wean off the DA, best done with the support of your doctor as coming off is difficult and you will need an alternative medication. Look the Augmentation Forum and see if anything here seems relevant. Has your doctor tried to help with these severe symptoms, is your doctor understanding. Would he be accepting of a copy of the document in the link in my signature. This document has been prepared by esteemed experts in the treatment of RLS and is worthy of discussion with your doctor. Please feel free to make a post and ask questions. We will do our best to try and help you.

[Rustsmith]

Tuesday, September 10

Welcome to

mitchk, who has suffered from RLS for years. mitchk has tried just about every treatment.

Many new members say that they have tired about every treatment because their doctor tells them that they don't have further suggestions. However, often that just means that they haven't tried the low dose opioids or iron infusions because their doctor will not offer them. To get an idea of the various treatments that the experts recommend, take a look at the document that the link in my signature points to.

[Rustsmith]

Wednesday, September 11

Welcome to

ADP, who has had RLS for 42 years. ADP was initially treated at Hospital for "anxiety " before finally being diagnosed. ADP is currently treated with low dose narcotics and getting then every month, trying to schedule vacation around Rx, and always having then with me is just such a focus of life.

You are fortunate to have found a doctor who is willing to treat you with low dose opioids, many have trouble with that. Fortunately, they appear to be effective for many years without the need for dose changes. But as you state, there is the problem of only being able to get a 30 day supply and the need to schedule your life around that calendar. If you have any questions, feel free to post a message or join in one of our existing discussions.

[Polar Bear]

Thursday 12 September 2024

Welcome today to

JLA whose RLS started in pregnancy and worsened badly post-partum due to iron deficiency. JLA has worked her iron stores back up to good levels, and symptoms are improved but not eliminated. Hormones play a role, and JLA notices a correlation between estrogen levels and symptoms. RLS affects her life due to interrupted sleep and resulting fatigue.

Well done on raising your iron level. Is this level up around 100 which is of benefit to us RLS sufferers and not around 20 which is often accepted as normal.
You don't mention if you are taking any prescribed medications such as Ropinerole and Pramipexole which can eventually cause augmentation. Over the counter medications such as Benedryl and some antihistamines will trigger symptoms. Some foods will be a trigger, often sugar. Hormones do indeed play a role.
Take a look at the document in my signature which discusses the treatment of RLS. If you have any questions please do feel free to post and ask. We are here to try and help you.

[Polar Bear]

Thursday 12 September 2024

Welcome today to

Jillsyberg who has problems traveling and occasionally forgets to take her afternoon medication which then causes problems catching up with the symptoms. Jillsyberg puts an alarm on my phone to remind her.

It is indeed a good idea to use an alarm reminder to take your medications. Medications work best if taken before symptoms kick in. They have to work so much harder once symptoms have begun. If you have any questions please make a post give details of how you are currently managing your symptoms, and we will do our best to try and help you.

[Rustsmith]

Thursday, September 12

Welcome to

ChristineS, who feels like I have tried every medication available. She even tried Methadone, but that made her so nauseous, She could barely function. So she is back on Oxy.

Dr Earley has said that all meds have side effects but that each tends to be different and that is why there are so many choices. Methadone helps many, but some cannot handle the side effects. If oxy stops working well for you, some doctors are now starting to move to buprenorphine, which has the advantage of being Sch 3 instead of Sch 2.

[Polar Bear]

Sunday 15 September 2024

Welcome today to

village24 who cannot lie still and sleep. She tears the covers off her bed and loses sleep.

RLS is an absolute torture. Are you being prescribed medication from your doctor? Has your doctor checked your Ferritin Serum level and if not please have this done. 'Normal' level is often considered to be anything from 20+ but us RLS sufferers benefit from having our levels up around 100. This check is not done as part of the usual blood panel and it must be specifically requested. The document linked in my signature regarding the treatment of RLS is very useful for your own information and for discussion with your doctor.
If you will make a post providing details of how your symptoms are being managed i.e. medications/dosages, what has and has not worked for you in the past, we will do our best to try and help you.

[Rustsmith]

Monday, September 16

Welcome to

NurseKatherine, who has been dealing with RLS for 10 years, and has had it treated for 8 years. She is 43 years old and is hoping to garner more information about successful treatments that are safe long term. She has gone through 4 different doctors and 3 medications so far. She seeks updates on the best treatments and advice.

You can find the latest recommended treatments in the document that the link in my signature points to. Also, feel free to post a message on the board with any questions that you have.

[Rustsmith]

Tuesday, September 17

Welcome to

anatbat, who has had RLS off and on for years and did figure out the link to iron in 2019 but over the last year it has become awful. Thankfully, the Foundation has a wonderful list of physicians and anatbat has been able to use telehealth to get a handle on the symptoms but some nights it is hard to make it through.

Happy to hear that you have found a way to manage your symptoms and a doctor that you like. If you have an questions that we can help with, feel free to post a new message or join into an existing discussion.

[Rustsmith]

Wednesday, January 18

Welcome to

edo00, who has had RLS since early childhood. It's gotten worse over time, especially after things like infections, a head injury, and chemotherapy. She is experienced worsening of symptoms again last year and feel the need for support from people who understand. Thanks in advance!

Please post a message and tell us a bit about what you are currently doing to manage your RLS so that we can try to provide some suggestions to regain control.

[Polar Bear]

Wednesday 18 September 2024

Welcome today to

Needacure who has had RLS since childhood and is looking for more support.

I hope you will find much interesting and relevant information here on the discussion board. When you feel like it join a discussion or even better start your own thread. If you will provide us with details of how you are managing your symptoms at present we will do all we can to support you. Please to feel free to ask questions and we will do our best to try to help you.