Restless Legs Syndrome (RLS) Discussion Board

Monday, April 17

Welcome to

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

There are a number of Foundation Quality Care Clinic other than Hopkins (which is overwhelmed by demand). You can find a complete list at https://www.rls.org/treatment/quality-care-centers

In addition, there is a document that you might be able to use to educate a caregiver in your area. That document can be found at https://www.mayoclinicproceedings.org/a ... 0/fulltext. It was written to educate caregivers on the proper way to treat RLS, especially those of us with refractory RLS.

Thursday, April 20

Welcome to

gataloca, who until recently, RLS was been managed with ropinirole, but gataloca ended up with augmentation and an autonomic small fiber neuropathy. gataloca rarely sleeps and the medications causes slurring of speech and a feeling of being completely stoned. gataloca is looking to find alternative ways to manage this condition.

Your first step would be to read through some of our alternative treatment forum messages. You should also check out this document because it contains the latest treatment recommendations by the RLS experts.https://www.mayoclinicproceedings.org/a ... 0/fulltext

And feel free to post a message with any questions that you have. We are here to try to help.

Thursday, April 20

Welcome to

LMoeck, who is currently on her 3rd medication and last night she was up all night and even today her RLS is as bad as it has ever been. Her sleep is horrible and she is desperate to see what others are finding helps them with their symptoms and sleep.

What medications have you tried? It sounds a lot like you are experiencing augmentation from taking dopamine agonists for an extended time. If so, the answer is that you must get off of them and switch to a different class of meds, such as an iron infusion, gabapentin or Lyrica or an opioid, such as methadone. You can also get an idea of the various treatment options from this document https://www.mayoclinicproceedings.org/a ... 0/fulltext

Feel free to post a message with any questions that you have.

Friday 21 April 2023

Welcome today to

HSR who has suffered with RLS for over 15 years. Fortunately, first Ropinerol and then Pramipexol kept it pretty much under control. In the fall symptoms worsened and the dose of pramipexol was increased. That worked for a short while, but then symptoms started getting worse again. HSR realized that it was augmentation and started doing some reading on how to deal with it. HSR asked the doctor for gabapentin and after about 2 weeks of virtually no sleep is now off pramipexol and taking 1800mg of gabapentin which seems to be helping, all though not as well as pramipexol before the augmentation.

It is unlikely that gabapentin will completely cover your rls symptoms, it does for some. Adding another medication such as a low dose opioid could be the answer, is your doctor likely to consider this. Many of us follow a dual medication method.
Please feel free to post and ask questions, we are here to try and help.

Sunday, April 23

Welcome to

PrakashDalal, who has had RSL since 2018, is on medication and would like to share experiences and learn from that of others.

We would love to hear about your experiences and also answer any questions that you have. All that you need to do is post a message.

Sunday, April 23

Welcome to

Shark28, whose RLS is affecting the quality of her life. She is looking for that solution that will help make this disease more manageable without increasing her meds.

Take a look around and see if you find anything that works that you haven't tried. You can also post a message with any questions or, if you are willing to tell us about your meds, we might be able to offer a suggestion for improving by switching rather than increasing the dose.

Sunday, April 23

Welcome to

KATHY LANGFORD, whose RLS has has made her feel like life is not worth living.

There are ways to treat RLS that will reduce the symptoms to the point where you will once again want to enjoy life. If you are willing to tell us what you are currently taking (including the dose), we can possibly offer suggestions that will improve your sleep and mood by controlling your symptoms. All you need to do is post that note.

Monday, April 24

Welcome to

kasey713, who is exhausted and is looking for a solution.

There are a number of ways to successfully treat RLS and the insomnia that it causes. All we need is a bit more information from you about what you are currently doing to manage your symptoms. That way, we will have a better idea of what to suggest.

Wednesday, April 26

Welcome to

wdethoma, who has RLS and is looking for an IME (Independent Medical Exam) for the severity of the symptoms.

The only way to diagnose RLS is through the use of a series of diagnostic questions that a provider asks the patient. You can see these questions at this website https://irlssg.wildapricot.org/Diagnostic-Criteria/

You might also want to look into scheduling an appointment with one of the Foundation's Quality Care Clinics. You can find a list of them with their contact info at https://www.rls.org/treatment/quality-care-centers

And if you have any questions, feel free to post a message on the board so that we can try to help.

Wednesday 26th April 2023

Welcome today to

BobN-VA who is lucky that this occurs only once per month but is starting to occur more frequently. It is quite debilitating. Bob wants to hear what others experience and learn more about mitigation.

We are happy that you have found us. If you will post and tell us more about your RLS history, any medications you may be taking and at what doses. The wrong medications can trigger RLS or make it worse. We would like to try and help you .

28th April 2023

Welcome today to

booboo15 who suffers from a severe case of RLS and wants to be as educated as possible on the topic, to not only help his/her self but also help others who suffer from this chronic illness.

Education is everything. It is so important to be able to discuss and indeed debate your rls treatment with your doctor. Please post giving us details of your rls and your treatment and we do all we can to help you.