FEBRUARY 2022 - New Members

[Rustsmith]

Thursday, February 17

Welcome to

Valthinking, who says that sleep is a luxury. Val envies people who snuggle under the covers, who snooze or read in a chair and don’t have to stand up unless they feel like it. Val can’t get an adequate plan going from a neurologist and has been working very, very hard at coping with 20+ years of RLS. Val also fights depression and suicidal ideation, and tries to hide symptoms so family or friends are not miserable too, although her husband is a doll and wonderful consolation. This thing is just evil.

I suspect that most everyone with RLS feels the same way. If you have any questions or would like suggestions for a treatment plan that you can discuss with your neurologist, just post a note and tell us what we can do to help.

[Rustsmith]

Friday, February 18

Welcome to

Jilly, who is eager to find out how others are coping and worried about the future on the medications she is taking.

We would be happy to provide you with comments about your meds and to tell you what we do to manage our RLS. As for the future of your meds, the only ones that cannot be taken forever are the dopamine agonists (pramipexole, rotigatine and ropinerole). These three drugs will eventually cause augmentation and force you to switch to a different class of meds. For many of us, this means switching to a low dose opioid, which is very safe but can be a bureaucratic nightmare at times when it comes to dealing with new doctors and pharmacists.

[Rustsmith]

Friday, February 18

Welcome to

pauladean520, whose RLS has impacted her life immensely with innumerable sleepless nights throughout the last twenty of her 65 years. Her job performance was severely impaired. She has finally discovered a technique to eliminate the twitches upon falling asleep which is when her problem becomes more serious but, she wants to learn more and share her story with others.

We look forward to hearing your story. As for other techniques, you can find which non-medication approaches that do and do not work but looking through our forum on Physical Treatments.

[Rustsmith]

Friday, February 18

Welcome to

Joseph, whose wife is a 20 year plus sufferer of RLS.

If you have any questions that either of you would like to have answered, just post a note and we will do our best to help you out.

[Rustsmith]

Saturday, February 19

Welcome to

K is learning, who I has had RLS for several years. K's average sleep time at night is three hours due to the pain and leg sensations. This has really affected K's entire life.

We would love to be able to help you learn more. All that you need to do is post a note with any questions that you have and we will do our best to answer them so that at least part of your life can return to normal.

[Polar Bear]

20 February 2022

Welcome today to

Kathy60 who has RLS and needs help with managing it.

Kathy60, our aim is to do what we can to help you. if you make a post in the Just Joined Forum and tell us about how you are coping with your symptoms we will do all we can to help. We all understand what you are going through.

[Rustsmith]

Monday, February 21

Welcome to

dialsa6092, who has restless legs every day. Dial gets them when dozing and gets then cannot concentrate on TV programs and cannot read.

Are you taking anything to try to manage your symptoms? If not, we can provide you with the info that you need to get started with treatment. If you are, then we would be happy to answer any questions that you have.

[Rustsmith]

Tuesday, February 22

Welcome to

lsg18, whose RLS sometimes its not so bad and sometimes it is crazy-making!

We can all appreciate that sentiment. If you have any questions, feel free to post a note and ask away. Or simply feel free to join in an existing discussion thread.

[Rustsmith]

Tuesday, February 22

Welcome to

muskiebait, whose RLS seems like RLS controls her life.What time of day can she attend events or gathering or hair appointments? It affects her health as she is nervous and eats when her symptoms begin in the evening. She is embarrassed to go out to dinner with people she doesn't know well because she will have to stand for awhile during the meal. She is also concerned about how much medication she is taking.

The most important thing is to take the medication that you need so that you can maintain your quality of life. You shouldn't have to give up going out to dinner with new friends or to have to worry about things like hair appointments and special events. So, here are a few questions for you to think about. 1) have you had your iron levels checked, especially ferritin. Treating low iron can dramatically improve your life and has the potential side benefit of possibly reducing the amount of meds that you need. 2) does your doctor truly understand how to properly treat RLS? Many (if not most) doctors are not well informed when it comes to treating RLS. These docs tend to simply throw more meds at you, which can eventually cause problems when they stop working.

So, if you have questions, please feel free to post a note and let us know what we can do to help you out.

[Rustsmith]

Friday, February 25

Welcome to

Lilaclady57, who has had RLS for at least 30 years. She has tried every medication and is currently on pramipexole and is suffering with augmentation. She will be seeing her GP on Monday 2/28 to discuss the use of methadone as a option for treatment as she feels as if she is going crazy. She is a 64 year old female and doesn't want to deal with this for the rest of her life!

There is a very good chance that your problems will be greatly reduced if you can convince your doctor to prescribe methadone. If you do, you will then learn about the stigma and bureaucracy that is associated with methadone, but at least your RLS and emotions will improve. If you have any questions or would like to discuss this with people who have been where you are today, just post a note and ask away.

[Rustsmith]

Friday, February 25

Welcome to

kaytay, who is not getting enough sleep. She is waking up with RLS several times a night which leaves her groggy, discouraged and depressed.

What are you doing to treat your RLS? Have you had your iron levels checked? There are many things that can be done to improve your situation, we just need to know a bit more about where you currently stand with efforts to manage your RLS before we can suggest anything. So, if you will post a note and tell us a bit about your current efforts to manage your symptoms, then we can try to provide you with some suggestions.

[Rustsmith]

Monday, February 28

Welcome to

ronnier, who has been dealing with an increase in severity for the last 10 years. For the last three years after having a sleep study done ronnier has experienced augmentation with Mirapex twice. ronnier is now in the process of weaning off of it and would like to see what others experiences are.

We would be pleased to be able to advise you of the challenges of getting off of Mirapex, which has often been described as the most difficult thing that you have ever done. To get a discussion started, just post a note and tell us a bit more, such as how much Mirapex you have been taking, how fast your are reducing the dose and whether your doctor is going to be willing to prescribe an opioid to help cover the withdrawal symptoms.