Restless Legs Syndrome (RLS) Discussion Board

Friday, April 11

Welcome to

cddrews5, who has RLS. It is genetic, managed with treatment, but there are adverse med side effects and symptoms.

If you would like us to provide answers to questions or suggest alternative treatments, just post a message that provides a few more specifics.

Friday, April 11

Welcome to

Sueclancy, whose husband has RLS and has suffered with it for 50+ years. Its SO sad to see him suffer with this daily AND nightly.

There are ways to treat RLS that were not have been available in past and that your husband's doctor may not be familiar with. You can read more in the Mayo document that the link in my signature points to. You are also welcome to post a message with any questions that you have.

Saturday, April 12

Welcome to

Jo Holly, who until recently, thought her RLS had stopped but then over the past month, they have reoccurred , but with restless arms too.

If you are taking one of the dopamine agonists, the spread to your arms and the increasing symptoms may be signs of augmentation. You can read about augmentation in our forum on the topic. Please understand that your doctor may not be familiar with this side effect of dopamine meds because it is specific to RLS and does not occur for other conditions where dopamine is prescribed. You are also welcome to post a message with any questions that you have so that we can try to help.

Sunday, April 13

Welcome to

JasonJR, who has lived with RLS for as long as he can remember. He is looking for real solutions that will improve his quality of life.

There are essential four tiers of treatments that are effective, but selecting which one to use depends upon the severity of your RLS and what you have tried and failed to use before. If you post a message that tells a bit about your past RLS history, we may be able to help. You can also learn more by reading this recent set of recommendations for treating RLS. https://jcsm.aasm.org/doi/10.5664/jcsm.11390

Please welcome mathlad to the board.

mathlad has suffered with RLS for almost 25 years. mathlad transitioned from Dopamine agonists to methadone a year ago and it has been life changing. mathlad is anticipating a move to a new state and is apprehensive about obtaining a prescription in the new state, and is seeking advice from people who live in the state I am moving to.

Welcome to the board, mathlad! You can start a Topic to get feedback from members. The best place would be either the General forum or the Prescription forum. Let us know what state you're moving to, and people with experience there will help you out.

Please welcome morrison94114 to the board today

morrison94114 has suffered with WED/RLS for 40 years, and has tried several medications but nothing helps and doctors don't know what to do anymore. Non-drug options (massage, warm showers, etc.) provide only temporary relief. morrison94114 is now 66 years old and says "I just feel like I cannot deal with this anymore".

morrison94114, you are not alone in feeling that way! But there are things to try, and ways to find better doctors. You can start a Topic here and tell us what medications you've tried, and if you can remember, what dose and how long you were on each one. Are you on anything right now? Are you taking iron? Taking iron (infusions or oral) is the most highly recommended treatment for most people.

There is a lot of good information on this board, and resources (medical publications) to help doctors treat WED/RLS (the most important are linked to in my signature below). We can help you choose the right resources to take to your doctor for your situation. Also, the RLS Foundation has certified a number of RLS Quality Care Centers (11 in the USA, 1 each in Austria and Switzerland) where specialists are trained to deal with severe, refractory WED/RLS.

Let us know how we can help you and many of our members will offer you support and advice.

Welcome today to our newest member, tappingandmoving

tappingandmoving wants to learn and to share. Although tappingandmoving's WED/RLS is largely controlled with morphine, they still have poor sleep nights that make life hard.

Welcome to the board! Please start a new Topic to tell us more about yourself or to ask questions. You can also comment and ask questions on existing Topics.

Sunday, April 20

Welcome to

buzzer, whose RLS started a little over 2 years ago after a back injury. Buzzer's doctor prescribed Gabapentin, one at bedtime, which worked on the shin worms when needed. Recently, the shin worms are occurring more often, Gabpentin is not as affective and so buzzer is thinking its time to increase the Gabapentin and therefore that it is time to see a neurologist.

Unfortunately, RLS is a condition that can increase in severity for several reasons. One is age, but two years is pretty quick for that. Another is that if your serum iron (specifically ferritin) levels are below 75 to 100 and have decreased, that could be the cause. Either way, consulting a neurologist that is familiar with treating RLS would be beneficial, but be sure the neurologist is familiar with RLS because many generalist neurologists are not.

You are also welcome to post a message here to tell us a bit more about your situation so that we can provide further insights that might help when you visit the doctor.

Monday, April 21

Welcome to

Zekeberk, who has been experiencing RLS several years now and is looking to hear what others are doing for relief.

In our files, you can find a number of effective treatments that are used. The treatment that works best depends upon the person and the severity of their RLS. You can also find a list of recommended treatments in this recent publication. https://jcsm.aasm.org/doi/10.5664/jcsm.11390

And you are welcome to post a message with any questions that you have so that we can try to use our knowledge to help you out.

Please welcome CaveSpring to the board.

CaveSpring has struggled with WED/RLS for years, seen numerous doctors, and tried various medications. CaveSpring would love to hear what others have found to be helpful.

CaveSpring, feel free to browse around and ask questions or to start a Topic of your own.

Tuesday, April 22

Welcome to

PrarieNorth, who was diagnosed with RLS about a year ago, suffers from paresthesia symptoms that arise at night and recur through mornings and afternoons. He had been taking pregabalin at bedtime to enable him to sleep at night, but after a few months he began to get side effects, forcing him to eventually discontinue the medication. He would like to post a question to inquire if this is a common problem. This information could be useful to others who have this happen to them.

Please go ahead and post your question. As you have probably already seen, there are all sorts of side effects from the various meds we take for RLS, so hopefully someone else has also experienced yours and can answer questions for you.

Thursday, April 24

Welcome to

Lidpop, who has had RLS for about 20 years and it got to the point where she could not sleep - so the doctor eventually put her on dopamine agonists. She cannot read a book for long, cannot watch tv with her husband in the evening without taking the medication and then cannot stay awake. She is terrified of reaching augmentation stage with the meds.

Has your doctor checked your ferritin levels and do you know the number? Increasing iron is often a way to reduce symptoms and having enough iron also helps delay augmentation. Your ferritin level should be at least 75 and better yet, over 100.

Before your doctor put you on a dopamine agonist, did you try gabapentin? The recommended treatments by the experts say to first test iron, then try gabapentin or pregabalin (Lyrica) before trying dopamine agonists. Gabapentin does not lead to augmentation, but doesn't work for everyone and will also act as a sedative, as dopamine is doing to you now.

If you need to educate your doctor about this, look at the document that the link in my signature points to and then highlight a section and ask your doctor to read that section during your next appointment.

If you have any questions, you are always welcome to post a message so that we can try to help you fill in the blanks.

Thursday, April 24

Welcome to

H01elmap, whose RLS has affected her husband, children and grandchildren. Both of her children (adults) have mild RLS to date. She wants to do and learn all that she can to help them.

The best place to learn about RLS treatments is the Mayo Clinic document that the link in my signature points to. Read it, share it with everyone and tell them to share it with their doctors as well since most doctors are terribly ill informed about RLS. You are also welcome to post any questions that you have so that we can try to help.

Friday, April 25

Welcome to

tcox, who think she may have RLS from a total knee replacement.

The knee replacement itself would not cause RLS because RLS is a neurological condition. However, blood loss during the surgery could have reduced the iron level in your blood enough to reduce iron levels in your brain, which can be a cause of RLS. Ask your doctor to check your ferritin level (this is not part of a normal iron test). If the number is below 75 (don't accept "normal" find out the number), then an oral iron supplement over a few months should help.

In the meantime, feel free to post a message so that we can try to help you further.

I'd like to welcome Deizzer77, who needs to know more about WED/RLS.

You're in the right place. Please look around; and start a Topic to tell us more about your situation. Someone here has probably gone through, or is going through, something very similar; truly, you are not alone here.

There are some medical papers and other interesting information in my signature link; it might be overwhelming at first, though. The RLS Foundation also publishes a number of brochures, which you have to be a member to access, but they're very informative and the membership fee (I think it's US$ 35) goes to support research and spreading knowledge about WED/RLS, especially in the healthcare community - doctors need to know this stuff! Go to https://www.rls.org/, Members, Publications.

I'm sure you'll find some kind of help here.