February 2024 - NEW MEMBERS

[Rustsmith]

Thursday, February 1

Welcome to

Tim63, whose RLS mostly results in a lack of sleep. He never could fall asleep with any kind of consistency. He also had problems in the day time shaking both legs and people thought heI was just a nervous person but he wasn’t. So, it has caused lots of frustration.

That sounds a lot like me, before my RLS got much worse. I hope that you don't follow in my foottracks. If you have any questions or would like suggestions on how to improve control of your RLS and improve your sleep, just post a message.

[Rustsmith]

Thursday, February 1

Welcome to

MikeC, whose RLS causes sleepless nights and problems while driving long distances.....Miserable!

Is your RLS being treated by a doctor? Have you had your serum ferritin level checked and is it over 100 (not just "normal")? If you have any questions, feel free to post a message so that we can try to help you out.

[Rustsmith]

Friday, February 2

Welcome to

shcedotal, whose RLS causes sleep problems and frustration with waking shortly after falling asleep and staying awake for several hours with creeping/crawling and random pains in feet and lower legs.

Is your RLS being treated by a physician? Has your serum ferritin level been checked to verify that it is over 100? If you are interested in finding out more, post a message and we can try to answer any questions that you have.

[Rustsmith]

Saturday, February 3

Welcome to

Sanj, who has been diagnosed with RLS and it has negatively impacted Sanj's quality of sleep and mood during the day. Sanj is looking for help in finding treatment options.

You can find the treatment options recommended by the experts by reading the document in the link in my signature and then sharing that with your doctor.

[Polar Bear]

4 February 2024.

Welcome to

judithearvizu who has severe RLS and can't sleep. Her husband is angry and drs aren't listening.

Sleep issues are usually what drives an RLS sufferer to seek help. Many doctors don't know how to properly treat RLS. See the link in my signature which is useful to share with your doctor
If you will make a post giving details of how you are managing your symptoms at present we will try and help.

[Polar Bear]

4 February 2024

Welcome today to

Khosro Hekmat who has been suffering from RLS for over 15 years. In the beginning, he was able to get the symptoms under control by doing stretching exercises before going to bed. He now has been taking Pramipexole 0.35 mg for 8 years and has also experienced augmentation. Now added pregabalin 150 mg. This only works to a certain extent. RLS clearly affects quality of life and Khosro would be very happy if medical research into RLS would invest more.

We would all wish for more research into RLS. The Foundation does fund research.
Have you had your Ferritin Serum checked, it needs to be over 100. If you have any questions please make a post and we will do our best to help.

[Rustsmith]

Monday, February 5

Welcome to

melwade, whose mum has severe RLS and she is trying to understand as much as she can.

You are welcome to ask any questions that you have by posting a message in the appropriate section of the board. In addition, take a look at the document in my signature and also consider buying a copy of the book "Clinical Management of Restless Legs Syndrome", 2nd Ed. by Lee, Buchfuhrer, Allen and Hening. The book is available on Amazon for about $US 35.

[Rustsmith]

Wednesday, February 7

Welcome to

Tracey, who has been suffering with RLS for over 40 years, and has been on prampipexole and gabapentin for about 18. She is worried about the long term affects of gabapentin. Her dose is .25 mg pramipexole and 2500 mg gabapentin every night.

Gabapentin is a VERY old neurological medication that has been in use for treating various forms of neurological pain for decades. There are a few recent indications that it can hasten the onset of dementia in those who are susceptible, but those studies are very recent and very limited. My only comment is that 2500mg/night is a very large dose. The max dose is 3600/day. One of the limitations of gabapentin is that its adsorption by the gut is inconsistent, so you may not be getting the benefit of the entire 2500mg. You might want to discuss this with your doctor with the idea of trying Lyrica or Horizant, both of which are related to gabapentin but are more consistently adsorbed. Unfortunately, both of them are also more expensive since they are both newer medications.

And please feel free to post a message with any questions or comments that you have, or simply add a note to an existing discussion thread.

[Rustsmith]

Wednesday, February 7

Welcome to

Janet RT, who struggle with RLS and AS and has numerous strategies that seem to help.

We would love to hear about your strategies that seem to help. Many of us have tried many different approaches to managing our RLS, but you may have something new.

[Rustsmith]

Wednesday, February 7

Welcome to

Cvmblackmon, whose RLS makes falling asleep a difficult task at times. It is very annoying.

Insomnia is often the first thing that drives RLS patients to seek medical help with their condition. Do you know your ferritin number? Have you discussed your insomnia with your doctor? If you have any questions, just post a message and we can try to help.

[Rustsmith]

Wednesday, February 7

Welcome to

RLBoston, who just realized in the last six months that this has become chronic. It took wearing through two sets of sheets. RLBoston has found activity makes it worse rather than better as RLBoston had assumed and it appears to be related to stenosis. Tramadol works for relief but RLBoston would rather not wrestle the doctor for it. RLBoston is trying the various cannabinoid edibles. Some work better than others.

There are a number of treatments that you should try before having to resort to Tramadol (which has its own issues other than battles with your doctor). Take a look at the document that the link in my signature points to to find the latest recommendations from the experts. And feel free to post a message here with any questions that you have. We would love to try to help you out.

[Rustsmith]

Wednesday, February 7

Welcome to

joeeagle66, who wants to get more information about these legs that drive him crazy at times.

Take a look around, but a great place to start is the document that the link in my signature points to. Another great source of information is the book "Clinical Management of Restless Legs Syndrome, 2nd ED. by Lee, Buchfuhrer, Allen and Hening, which is available from Amazon.

[Polar Bear]

8 February 2024

Welcome to

epws who has had RLS for 30 years and has had an assortment of treatments(iron infusions for low ferritin levels, Gabapentin, Pregabilin) each has worked for a little bit- some longer than others. Recently had Botox in the calves and is curious to hear about others experiences with the treatment. Also, epws is desperate for a community of other RLS suffers to gather info regarding treatments, lifestyle changes, support for loved ones, etc

I am unaware of any treatment of Botox in the calves and it will be interesting to see if any other members are familiar with this.
As you read through the Forums please feel free to comment and to ask questions. Or start your own thread, we will do our best to help you.

[Polar Bear]

8 February 2023

Welcome today to

gsloper who has whole body RLS and needs all the help he can get

RLS is pretty awful and whole body RLS is so difficulty to cope with. If you will make a post giving us details of how you have been managing your symptoms, what medications have or have not worked, we will do our best to try and help.
I hope your doctor has checked your ferritin serum level and that you know what your level is. You will want it to be up around 100 and not just accept that it is 'normal' because some labs will consider anything over 20 as normal. The check for your ferritin serum level is not done with standard blood checks, it has to be specifically requested.

[Polar Bear]

8 February 2024

Welcome today to

pkstex who has suffered RLS with dystonia for 30+ years. It has dramatically constrained the ability to travel and volunteer.

Please post and tell us how you and your doctor have been treating your symptoms. Do you know what your ferritin serum level is, this is important and you want it to be up around 100, don't just accept being told that it is normal. It is a test that needs to be specifically requested. If we know what medications may or may not have previously worked for you we may be able to guide you forwards. Also some over the counter medications can aggravate RLS symptoms.