MAY 2021 - New Members

[Rustsmith]

Sunday, May 23

Welcome to

suonbowen, who can remember having RLS first when she was 12 and had to bang her legs on the bed to exhaustion so she could sleep. The doctor said it was growing pains. It has affected her for her whole life since with bad sleep. Now a an elderly person with even more diminished sleep and lack of sleep all this time has she believes brought on diabetes etc.

We can all appreciate where you are at this point in your life. If you have any questions, feel free to post a note with them and we will try to answer them.

[Rustsmith]

Sunday, May 23

Welcome to

jena95833, who can only sleep after hours a night. She has no quality of life. Its not just at night but all day. Having a hard time getting help from her doctor.

Many of us have had to go through a number of doctors before finding a "keeper". They are not trained in how to treat RLS is school and often are not interested in learning. We can try to help you find a doctor who understands the proper way to treat RLS if you will post a note telling us what you need to know.

[Rustsmith]

Sunday, May 23

Welcome to

Titanons, whose husband has had RLS for more than 20 years now and it’s been getting worse. She would like to know what others do to relieve the syndrome.

If you don't find what you are looking for by looking around our messages, feel free to post a note and ask us about the variety of things that we do.

[Rustsmith]

Monday, May 24

Welcome to

Deb212, who has had RLS her entire life. Her mother has always yelled at her to sit still. After using the meds for more than 10 years and experiencing augmentation she was much, much worse. She took 2 years to detox from the meds and her RLS has mostly just been at night (rather than 24/7). She doesn't sleep and is looking for help from others in this community.

There are medications available for those who have been through augmentation that allow us to resume a fairly normal life. Unfortunately, the treatment often involves using low doses of opioids that many doctors refuse to prescribe. If you are willing to post a note telling us what else you have tried, we can probably point you in the direction that you need to take, whether that is finding an RLS knowledgeable doctor or selection of the next treatment to try.

[Rustsmith]

Monday, May 24

Welcome to

StillCoping, who has had RLS since he was a child and has managed it well, until he got married. His wife is now having to deal with his symptoms and she's having a hard time- especially since she's a light sleeper.

There are a number of ways to help our your wife. The first is to see your doctor about fixing your treatment. It is possible to calm your PLMS. Another is to get a split king bed. That way you can still sleep together but your movements are far less likely to disturb her. If you have any questions, feel free to post a note and ask. That is what we are here for.

[Rustsmith]

Monday, May 24

Welcome to

margotgenger, who quit taking the prescription medicine because of augmentation and now she gets 3-4 hour blocks of sleep at a time. She is hoping to get more suggestions about how to manage her RLS.

Not all of us can get by without medications, but there are a few things that you can do that might work for your RLS. The first thing would be to know what your ferritin level is since ferritin levels below 100 can often be a problem. Periodic iron IV treatments can help with that. There are also a few non-prescription things available. If you need to know more, just post a note to give us an idea of what to suggest.

[Rustsmith]

Tuesday, May 25

Welcome to

Lucy616, who wants to find out more about RLS and to contribute her knowledge.

We look forward to hearing from you. If you have any questions, please don't hesitate to post a note with them.

[Rustsmith]

Tuesday, May 25

Welcome to

bubba 2, whose RLS has been preventing him from getting a full nights sleep. This creates daytime conditions which affect his daily activities.

If you would like some suggestions to improve control of your RLS so that you get more sleep, just post a note to tell us what you are currently using for your RLS so that we can know where to start.

[Rustsmith]

Tuesday, May 25

Welcome to

Maur, whose RLS is debilitating. Maur was doing well for years on Ropinerole, then developed augmentation. Maur was placed on opioid therapy, which relieved the RLS well, but has created psychological side effects with feelings of doom and sadness and loss of appetite.

There are many different opioids and they all have different side effects. Talk to your doctor and ask to be switched to a different opioid. If you would like to hear about specific alternative meds, post a note telling us which one you are taking so that we can provide you with some suggestions.

[Rustsmith]

Wednesday, May 26

Welcome to

jjdaly3127, who is in augmentation after topping off at 6 mg Neupro. jjdaly's neurologist said he has no other method of treating and said to see RLS unit at Johns Hopkins. With the death of Dr. Allen that might be a difficult appt to get. Just need help.

Dr Allen only did research and did not treat patients, so his death should not change your chance at getting an appointment. However, I have recently heard that the Hopkins RLS group is currently only allowed to see Maryland residents. If your neurologist would be receptive to learning more about RLS, we can point you towards publications that you can share with him so that you can both move on to the next stage of treatment. All you need to do is post a note telling us if you need that help.

[Rustsmith]

Thursday, May 27

Welcome to

JHenn, who has had RLS most of her life and is now 60. It runs in her father’s side of the family. It’s getting worse and she doen’t want to take more prescription medication just to get some relief. Looking for more natural remedies.

Unfortunately, there are not very many natural remedies except for iron supplements and kratom, which is a natural opioid source. You can find a lot about these in both our General Topics forum and in our Non-Prescription Medications and Supplements forum. If you have any questions or would like more a specific discussion of these topics, just post a note telling us what you are looking for.

[Rustsmith]

Thursday, May 27

Welcome to

Dusty44, whose has restless leg and arm syndrome. Because of this condition Dusty has severe insomnia which effects every aspect of life.

If there is anything that we can to do help you improve the control of your RLS, just post a note and tell us what you need.

[Rustsmith]

Saturday, May 29

Welcome to

Diljosh, who is new to this syndrome and experiencing the symptoms recently . RLS has severely effected sleep and DIljosh is on pramipexole medication since nine months but the results are mixed. Diljosh has joined the board to become acquainted with this dreadful condition.

We would love to be able to answer any questions that you have. All that you need to do is post a note to let us know what we can do to help answer them.

[Rustsmith]

Sunday, May 30

Welcome to

HBandBW, who doesn't sleep well due to RLS several nights a week. HBandWB has of health problems because of this and the consequent fatigue makes it so hard to perform basic daily tasks.

Insomnia is the primary reason why most of us initially approached our doctor about our RLS. If you have any questions or would like some suggestions on how to get better control your RLS, just post a note and tell us what we can do to help.

[Rustsmith]

Sunday, May 30

Welcome to

woozy, whose RLS has badly affected life since October 2020. Its getting worse and worse,sleep is difficult so she is just sitting down to watch TV. Her RLS can come at any time of day.

If you are having issues during the day are you currently taking a medication that could be making your RLS worse? This can include anti-depressants, some anti-histamines and even the dopamine meds that are often used to treat RLS. If there is anything we can do to help, just post a note with your questions.