Restless Legs Syndrome (RLS) Discussion Board

Tuesday, October 20

Welcome to

Usetpage, whose daily routine has been disrupted by RLS. Dopamine agents side affects have been bothersome, and gabapentin has not be particularly helpful.

First off, has your doctor checked your ferritin and other iron levels? For those of us with low iron, iron supplements or even iron IV treatments can be life changing. The two catches are that ferritin tests require a doctor to specially order the test since it is not part of a normal iron test. Second, iron treatments take a while to become effective. Oral iron can take months to help, depending upon where you start. IV iron often takes at least two weeks once the final infusion has been completed.

If you have any questions or would like to discuss your side effects further, feel free to post a message that we can respond to.

Saturday, October 26

Welcome to

RHS, whose RLS has decreased his quality of sleep and made treating other medical conditions very challenging.

There are a number of treatment tiers for RLS that are effective, but many doctors only know about the dopamine meds. If we can provide you with some suggestions, just post a message and tell us a bit about your challenges.

Saturday, October 26

Welcome to

Nancys, who has had greatly disrupted sleep for many years.

There are a number of ways to improve your sleep. If you would like to hear some suggestions, just post a message and tell us what you have been doing to manage your RLS.

Saturday, October 26

Welcome to

PrD, who has had RLS going back to age 6. It was always passed off as growing pains. PrD us guilty of saying that to PrD's own son, before finding out RLS! PrD is now 70 and it has a major part of life.

If you have questions or would like suggestions to reduce the impact of RLS on your life, just post a message and tell us about what you are doing to manage your symptoms so that we can try to help you.

Sunday, October 27

Welcome to

AnyaMV, who believes she has RLS. She is looking for information on the condition.

RLS is not diagnosed through testing, the diagnosis is done by a physician asking a patient five questions. If the answer to all five questions is "Yes" then the individual has RLS. If even one answer is "No", then the patient has some other condition. You can find these questions near the beginning of this document: https://pmc.ncbi.nlm.nih.gov/articles/PMC6280211/

To learn more about how RLS should be treated, read the document that the link in signature points to, but remember that almost all doctors have very little knowledge about how to diagnose and treat RLS and often do not follow these guidelines that were prepared by the leading RLS experts. In fact, some doctors deny the existence of RLS or will tell patients that it is all in your head rather and say three simple words: "I don't know"

28 October 2024

Welcome today to

Mabe who has suffered from restless legs syndrome since a child. A few years ago Mabe was put on pramipexole and although it worked at first, the symptoms have now increased to the point of becoming unbearable. Mabe thinks the worst thing was to start taking medication. Apart from that, the fragmented sleep takes away quality of life.

Pramipexole is a Dopamine Agonist Drug and these drugs are no longer considered first line for RLS treatment. When we all (most of us) were firstly prescribed one of the Dopamine Agonist Drugs it wasn't realised how they could cause augmentation. Many doctors do not realise they are no longer first line treatment. If you are still taking the pramipexole It is likely that you have augmented and the answer is to wean off the Pramipexole and discuss with your doctor the plan going forward. Weaning off Pramipexole is not easy and if your doctor is understanding, a prescription for a low dose opioid will make the weaning process easier.
I suggest you read some of the Augmentation Forum and see if any of this strikes a chord.
The link in my signature will take you to a document prepared by several RLS experts regarding the treatment of RLS and is very useful for discussion with your doctor.
You have said that the worst thing was to start taking medication - it depends how severe your rls symptoms are. Sometimes non prescription methods will help, distraction techniques, hot or cold baths. If your symptoms are disruptive, as they would appear to be, it is difficult to manage without some form of medication.
If you have any questions please make a post, providing some background to your rls management regime, and we will do our best to help.

Tuesday, October 29

Welcome to

emilyd24, whose husband has suffered with RLS for almost a decade now. It is ruining his life, and she feels like there has to be something they can do. None of the medications he has tried work, and this is putting a massive strain on their relationship, his ability to work, and his quality of life in general.

Please read the document that the link in my signature points to. Most doctors are not familiar with the proper and effective ways to treat RLS and end up creating more problems than they solve. If you don't see what you need, feel free to post a message with any questions that you have so that we can try to help the two of you find a better life.

29 October 2024

Welcome today to

RLSwhiteknuckler who has been suffering from severe RLS since 2006. Has augmented on ropinirole in the past. It is still the only thing that has worked. Now that side effects have set in RLSwhiteknuckler is at the same time watching aging.

As I understand it, ropinerole is the only thing that has worked for you but you have augmented on it in the past.
When you say it is still the only thing that has worked, are you saying that you are still taking it. Do you mean that you are taking it at present and are also augmented on it. The only solution for augmentation is to wean off the ropinerole.
The document linked in my signature has been prepared by the leading RLS experts and will guide yourself and your doctor (if he is open to receiving such a document) in the treatment of your symptoms. To wean off the ropinerole you will need the support of your doctor, it is not an easy journey. If you have any questions please make a post providing details of how you are managing your symptoms and what medications have or have not worked for you. We will do our best to help you.

Wednesday, October 30

Welcome to

PENAQUITAS1, who has had RLS for 10 years and it is unbearable at times.

We are happy that you found us and sad that you had to.
If you have any questions or would like some suggestions that might improve your treatment, just post a message and we will do what we can to help.

Wednesday, October 30

Welcome to

wcp2008, who has had RLS for more than 15 years, but has been treated with Ropinirole for 15. wcp has used Gabapentin and is using Clonazepam. wcp is now being treated by Dr Aagarwal in Pittsburgh and is titrating off Ropinirole and Clonazepam and has started Pregabalin after augmenting for the past several years.

Congratulations for finding Dr Aagarwal at the Quality Care Clinic in Pittsburgh. You are in excellent hands. Good luck with titrating off of ropinerole and clonazepam. Both present a rough road ahead of you but once you are off of them, you will feel much better.

If you have any questions, feel free to post a message and we will do what we can to help.

Thursday 31 October 2024

Welcome to

Yogesh who has suffered from RLS since 5 years. Male 65 years.

You will find much useful information here, probably starting with the Just Joined Forum. If you have any questions please do make a post, providing details of how your RLS symptoms are being managed at present and what has or has not helped in the past. This gives us a starting point to try and help you.