Restless Legs Syndrome (RLS) Discussion Board

1st April 2023

Welcome today to

CookieRockwell who has had RLS since a child. Cookie's mother, grandmother, and two of sisters also suffer. Many sleepless nights. Many uncomfortable and frustrating afternoons and evenings. On Gabapentin 1200mg per day, which helps somewhat. Has tried everything else under the sun that's OTC, none of which had any effect at all.

To be honest for most of us OTC meds are a waste of time although sometimes there may be a benefit. As you will have realised there can be a genetic factor. Please post and tell us what has and has not worked for you. The meds you are on at present, are you taking anything else as well as the Gabapentin. Feel free to ask any questions. This is what we are here for.

Monday, April 3

Welcome to

CathyF02, who has RLS and would like some recommendations from others.

We would love to be able to provide you with recommendations to improve control of your RLS. All you need to do is post a note telling us about your current level of treatment.

Monday, April 3

Welcome to

lauriet406, who has had RLS very infrequently since she was a child and then it gradually got worse through her 30's, 40's and 50's. It became much worse in 2017-18 after a period of high stress and increased caffeine usage. She went on pramipexole in 2018 and then switched to rotigotine in 2020 due to augmentation. She is on a 2mg dose of Rotigotine currently and is in the process of transitioning off it completely.

If you have any questions about stopping or what comes after getting off of all dopamine agonists, just post a note with your questions.

Tuesday, April 4

Welcome to

jdclampit, who was weak and very tired with RLS . Then jdclampet found a doctor who cared and helped.

We are happy to hear that you were able to get help. If you have any questions, just post a note and let us know what you can do for you.

Tuesday, April 4

Welcome to

0scarPatrick, who suffer from RLS and is looking for support and up-to-date info.

If you don't find what you are looking for in our messages, just post a note and we will be happy to provide you with the latest info about RLS.

Wednesday, April 5

Welcome to

Asonnier66, who has had RLS since she was a teenager. She has been taking meds for over 20 years and thinks it’s getting worse and is frustrated.

Are you taking a dopamine agonist (pramipexole, ropinerole or rotigatine)? If so, you could be augmenting after all this time. If you have any questions, just post a note and we will do our best to help.

Saturday, April 8

Welcome to

TNJJ, who has suffered with RLS for 47 years and it is progressively getting worse with age. TNJJ ism looking to connect with others that deal with this disorder for support and information. It has affected TNJJ's life for so long and is just making everything worse and not allowing any restful sleep.

We would be happy to help in any way we can. All that you need to do is post a note with whatever questions or comments that you have.

Monday, April 10

Welcome to

dolowill, who says that RLS is so frustrating. She dreads going to bed, because she is just waiting for her legs to start kicking. Even though she takes medication and avoids the triggers, RLS still affects her many nights and she can't sleep or even sit quietly and read a book. It's also started to creep into her daytime relaxation.

If you are currently taking a dopamine agonist (pramipexole, ropinerole or rotigatine), the daytime creep may be a sign that you are starting to augment and need to get off of dopamine based meds (not just switch to a different one). Unfortunately, for many of us this meant having to switch to a low dose opioid and often this meant having to find a new doctor who specializes in RLS. If you have any questions, feel free to post a message so that we can try to help you out.

Tuesday 11th April 2023

Welcome today to

DoylePadilla whose Restless legs syndrome has significantly impacted life, making it difficult to fall asleep and stay asleep at night. It has also caused DoylePadilla to experience discomfort and restlessness in the legs during the day, which can be distracting and frustrating.

It would be interesting to know what medication you may be using to treat your RLS. Medications such as pramipexole/ropinerole can eventually cause augmentation which would be indicated when symptoms present during the day. (There are exceptions of course and I had RLS symptoms 24/7 before I ever began medications).
Please make a post providing details of your RLS history, any medications (and dosages) that have or have not worked and this will give us a starting point to try and help you.

Tuesday, April 11

Welcome to

Hosserdog, who last month, was taken off her low-dose methadone, by ICU doctors who decided she had an opiate dependency and she had been on it too long (14 years). She is absolutely miserable! The doctor that originally prescribed it has since retired, so she has nowhere to turn as she lives in a rural area.

What did the ICD doctors suggest as an alternative treatment or as a treatment for dependency? An option that will require some travel, but try to get an appointment at the nearest medical school (state capital?). The doctors there may be more willing to put you back onto methadone. The ignorance of doctors when it comes to treating RLS is appalling and finding one that understands can be challenging.

Another suggestion would be to find the nearest pain clinic or opioid dependence treatment facility (travel again). Take a copy of this publication and try to convince them that you are not opioid dependent and have a real need for methadone. https://www.mayoclinicproceedings.org/a ... X/fulltext

Tuesday, April 11

Welcome to

shinderliner, who has suffered with RLS for almost 50 years, being treated with ropinirole for about 15 years. Symptoms have been worsening for the past two years and shinderliner to learn to have an informed and honest discussion with the doctor.

Your best source of information will be this document, which you should share with your doctor. It is the latest recommendations prepared by many of the leading RLS experts in the US.https://www.mayoclinicproceedings.org/a ... 0/fulltext

You should pay particular attention to the section on augmentation.

And feel free to post any questions that you have, before or after meeting with your doctor.

Wednesday, April 12

Welcome to

Thaalisyaxx, whose RLS is manageable since it is probably secondary to another health issue and it is of medium intensity.

If you have any questions or would like to join any of our existing discussions, just post a message.

Wednesday, April 12

Welcome to

Bicycle01, whose husband's RLS as effected sleep and rest significantly. She is hoping to find some help with this awesome disease.

Your best bet will be to read the document below and then have him share it with his doctor after marking relevant passages. We will also be happy to answer any questions you have if you will simply post a message in the appropriate forum.
https://www.mayoclinicproceedings.org/a ... 0/fulltext

17th April 2023

Welcome today to

Jackolette whose RLS affects life every day. Jackolette has struggled with refractory RLS for many years and hasn't found any local caregivers that are well versed in the treatment of RLS and when Jackolette finally decided to go to John’s Hopkins, they advised they aren’t taking any patients with that diagnosis.

It can be difficult to find a doctor who is local and can provide decent rls treatment. Take a look at the link in my signature which gives a good guidance for treatment and my GP helped me to use this until eventually we found what worked for me. By the time I eventually saw a Movement Disorder Consulant, having suffered for nearly 40 years, my treatment was as good as it could be.... After much trial and error.
Please make a post giving us an approximation of where you live, even just the state and we may be able to guide you. Many sufferers have to travel. Also please feel free to ask questions. If you provide some rls history we will do what we can to help.

Monday, April 17

Welcome to

cancun, who would like to read what others are doing to treat RLS - diet changes vs medication.

You can find quite a bit of that sort of information in our forums. If you have any specific questions, just post a note and we will do our best to answer them.