APRIL 2022 - New Members

[Rustsmith]

Saturday, April 2

Welcome to

CandyW, who suffers from RLS. And says that tt is nice to know there is support.

We would love to provide whatever support you need, be it answering questions or just discussing life with RLS. All that you need to do is post a note to start the discussion.

[Rustsmith]

Sunday, April 3

Welcome to

Gaga, whose RLS has ruined her life, She gets no sleep and is tired all the time. She can't do the things she used too because of being tired all the time. it's also horrible for her husband who wishes he could help her.

We would love to help you out. If you post a note telling us what you are currently doing to manage your RLS, we can probably offer suggestions of things to discuss with your doctor so that you can start sleeping again and regain at least some your old life.

[Rustsmith]

Sunday, April 2

Welcome to

EJayWilliams, whose RLS is the primary cause of his lack of sleep. He uses a cpap. It helps, but RLS is the primary culprit. He has not wanted to take the Parkinson-like medications, and is searching for alternative solutions.

The very first thing that you should do is ask your doctor to check your iron levels, especially ferritin, which has to be requested separately from the other iron analyses. You should then find what the number is since we need to be over 75 and "normal" for others is anything over 20. If you are not over 75, you should start oral iron supplements and then get rechecked in about six months. After checking your iron levels, the next step should be either gabapentin, Horizant or Lyrica before trying the Parkinson's meds (pramipexole, ropinerole and rotigatine). Your doctor may not be familiar with all of this since the Parkinson's meds were the first line treatment up until about 10 yrs ago.

If you have any questions, feel free to post a note and ask away.

[Rustsmith]

Monday, April 3

Welcome to

Alejandra, whose partner has RLS and has been on various medications, most recently dopamine, tramadol and now methodone. The methodone seems to be working, but since his other meds have fallen short, she just wants to learn as much as possible about other strategies to be supportive. She is worried about him and his overall health with such interrupted sleep, and wants to know if there is any connection to heart problems from erratic sleep and side effects from the methodone.

Your partner is in good hands if his doctor has put him on methadone. It is a med that does a good job of controlling RLS symptoms and many of us have been on it for many years without having to switch to something else or increase the dose.

As for heart issues, he should ask his doctor to do an EKG to screen him for Prolonged QT Syndrome. There is a rare side effect of methadone that can aggravate this condition. As for other side effects and heart problems, there isn't anything that is specific to methadone, but current research is starting to point to a possible tie between interrupted sleep and heart issues. This is a current area of study and not something to get concerned about yet unless he has a pre-existing heart condition.

One side effect of methadone (and other opioids) that could become a problem for him is low testosterone levels. Methadone can depress testosterone production. The signs of that are decreased energy, decreased libido and depression. It took me about six months before this became a problem. Fortunately, low testosterone is easily treatable and I saw all of the symptoms disappear in the first couple of days (which made my wife very happy )

If you have any further questions, feel free to post a note and let us know what we can do for you. That is what we are here for.

[Polar Bear]

Tuesday 5th April 2022

Welcome today to:

jangelo who has been diagnosed with RLS for the past 12 yrs, jangelo has been on requip 2 mg for the past 11 yrs , just up the dosage to 4 mg, his wife says his legs have been worse the past yr along with my CPAP use, any ideas

jangelo, the doctor who is treating your rls does not appear to be fully familiar with the correct treatment. You have been on much too high a dosage of Requip, 2mg was too high and 4mg is way too high. The max dose is considered to be 1mg daily. It is likely that you are augmenting. Please look at the Augmentation Forum for relevant information and if you would make a post with your rls history and any other medications you have tried we would be happy to help guide you. Please note that you should not stop taking your Requip suddenly, you need to wean off carefully, especially at this this dosage and we can help you.

[Polar Bear]

5 April 2022

Welcome to:

need more sleep who has had RLS since very young and it would come and go. Now 56 it is severe every night. It use to go away with sleep but now there is a pattern of dozing off, then waking to find its out of control. Sleep is horrible and so basically looking for help to manage this beast.

It is a problem with sleep that usually drives sufferers to seek help. The Just Joined Forum will have lots of relevant information.
However, If you would make a post we can be a bit more specific in trying to help you. Are you attending your doctor, have you been prescribed any medications and at what dosages. What all have you done to try and ease your symptoms. We are here to try and help.

[Rustsmith]

Tuesday, April 5

Welcome to

Teresa m hopkins, who has suffered from RLS for 40 years. She has augmented by taking Mirapex for 20 years. She is looking for guidance to her next step. She cannot sleep at present.

Has your doctor checked your iron (ferritin) levels and are they over 75? If not, then iron therapy (either oral supplements or an IV infusion) would be the first step. At the same time, you need to get off of the Mirapex, which can be difficult. If your doctor is willing to prescribe an opioid, that can cover the withdrawal from the Mirapex. If not, you have a long, arduous withdrawal with zero sleep for a week and horrible RLS followed by slow improvement with short naps and lessened RLS. As for medication after Mirapex, your doctor may want you to try gabapentin, which helps about 65% of us, but it won't help until you are mostly finished with withdrawal. Or, you could start with a low dose opioid, which will cover the Mirapex withdrawal and treat your RLS.

Either way, we are here to help you if you would like. Feel free to post any questions or simply to whine as you go through this next stage of your RLS.

[Rustsmith]

Tuesday, April 5

Welcome to

Goingcrazy, who was on on pramipexole for over 10 years, but developed a horrible gambling addiction. Goingcrazy finally got off of it and now nothing else is working, so Goingcrazy is gonna go insane without rest. Goingcrazy is not herself anymore and can’t live like this.

Most of us have been where you are with respect to having to quit pramipexole and having sleep problems now.

Has your doctor done blood work to determine your iron levels, specifically ferritin? Do you know the number?
Have you been able to try a low dose opioid? What you experienced with respect to gambling wasn't addiction, it was an Impulse Control Disorder, which is not the same thing. This is important because low dose opioids work for almost all of us and also continue to work for many years.

If you have any questions, please post a note and tell us how we can help. It is possible to regain control of your life, but unfortunately you will probably need to lead your doctor in the direction that you need to go since he/she has probably surpassed his/her level of knowledge of treating RLS. We can provide you with the documents that you will need to educate your doctor, but we need to have an idea of where to start.

[Rustsmith]

Thursday, April 7

Welcome to

Tobias10, who has had severe RLS for 25 years and is having trouble finding a qualified specialist.

Finding a doctor who understands RLS can be the hardest challenge of all. If you are willing to tell us where you live, we might be able to offer some suggestions. Otherwise, it is sometimes easier to educate your current doctor using publications such as this one:

https://www.mayoclinicproceedings.org/a ... 0/fulltext

[Rustsmith]

Thursday, April 7

Welcome to

ketaha, who is experiencing symptoms of RLS and is looking for info.

We should be able to answer most of the questions that you have. All that you need to do is to post a note and let us know what you are looking for.

[Polar Bear]

Friday 8 April 2022

Welcome today to:

maribarosay - who has sleepless nights. Real suffering many nights. Most nights.

It is these sleepless nights that send most rls sufferers looking for help. Have your been to see your GP and have you been prescribed any medication. Has your GP checked your Ferritin Serum levels which should be up near 100 which is required for us, and not content with the often accepted level of around 20 as being normal. Please post and tell us how you have been coping. We are here to try and help you.

[Polar Bear]

Saturday 9 April 2022

Welcome today to:

ccharlie2004 - who suffers from lack of sleep with consequent tiredness, lack of concentration and memory retention and emotional fluctuations. Disruption to social activities. Strain on marriage.

Oh we understand so well how you are feeling and would like to help you. This awful condition affects all aspects of our lives. If you make a post and tell us what you are doing to control your rls symptoms it will give us a starting point to do what we can with help and advice.

[Rustsmith]

Sunday, April 10

Welcome to

colburj, who is looking for possible help for herself and her mother. Colburj has a mild intermittent case and her mother has severe, non-stop RLS in her legs and arms.

We would love to provide whatever help you need. All you need to do is post a note to ask any questions that you have. We can also offer suggestions of things to discuss with your doctor(s) if you are willing to tell us what each of you is currently doing to manage your symptoms.

[badnights]

Welcome to SShively51 whose WED/RLS has made life a living hell.

SShively51, we're so sorry you are in dire straits and have had to come to this board for help, but we are also glad you made it here, because you will probably find help and comfort here. You can read the posts of other people, and comment on them or ask questions. You can also start a Topic of your own and tell others your situation. How long have you had this condition? What medications have you tried, and are you taking any medications right now? Do you know about augmentation?

Please feel welcome here, and I hope you get benefits from being here.

[Rustsmith]

Thursday, April 14

Welcome to

dallen54, whose RLS affects not just his legs but often his arms and whole body as well. It affects every aspect of life as he has it not just at night but many of daytime hours as well, making it hard to sit through church. He spends much of his work day standing and is grateful his boss allowed him to get a desk that adjusts to standing height. He is hoping to find some helpful information here to get some relief.

Are you currently taking a dopamine agonist to treat your RLS (pramipexole, ropinerole or rotigatine)? If so, it sounds a lot like you are experiencing augmentation and need to switch to a treatment that is not based upon a dopamine agonist. To learn more, take a look through our forum on augmentation. And if you have any questions, feel free to post a note and let us know how we can help.