JUNE 2023 - New Members

[Rustsmith]

Tuesday, June 20

Welcome to

Raton, who has had RLS since she was a child but it has worsened over time and is seeking solutions. Doctors tend to.... dismiss the problem and her sleep is getting worse and worse.

Doctors dismiss what they are not familiar with and RLS is not taught in med school. You might try sharing this document with your doctor. Highlight a couple of sections and ask the doctor's opinion. It is far to say that you found it through the RLS Foundation, do not say that you found it on the Internet since that is a sure turn-off for most doctors. https://www.mayoclinicproceedings.org/a ... 0/fulltext

And if you have any questions or would like to join an existing discussion, just post a message in the appropriate area.

[Rustsmith]

Wednesday, June 21

Welcome to

vkerr, who has been struggling with RLS for many years but managed to usually get a decent night sleep. Lately it has made sleep nearly impossible and she is trying to understand the options folks use to help with sleep. She has been using a warm bath but last night ended up taking 5 warm baths throughout the night and still only slept 3 hours.

Most whose RLS is at the level where it sounds like you have reached have to resort of medications to treat their RLS. Unfortunately, many (if not most) doctors do not know how to diagnose or treat RLS and rely upon what drug company sales staff tell them. The best treatments are described in this document - https://www.mayoclinicproceedings.org/a ... 0/fulltext

Our normal suggestion is to highlight relevant passages and then hand it to your doctor and say something like "I would like your opinion about what these doctors have to say about treating my condition". Do not say that you found it on the Internet since that will be an immediate turnoff for your doctor.

And if you have any questions, feel free to post them so that we can try to help you get some sleep.

[Rustsmith]

Friday, June 23

Welcome to

ChristinaRLSest1991, who says that sleep is a gift, late nights standing on the side of the bed make for rough mornings. It is frustrating finding doctors who have any clue how to treat RLS/PLM, is embrassing on an airplane, in a meeting, a movie, getting a haircut......

Almost all of us can relate to those statements. If you have any questions you would like to ask or would like advice on finding doctors or getting better treatment for your RLS, just post a note and let us know how we can help.

[Polar Bear]

Saturday 24th June 2023

Welcome today to

cmareep has suffered with RLS for 37 years, and it has progressed to severe. It is the most maddening torture! cmareep wants to learn as much as possible about this brain disease, learn from others who experience this, and hopefully help others by sharing experiences.

Maddening torture describes rls very well. You will find a lot of information here, starting probably on the Just Joined Forum.
Please do post and feel free to ask questions. We are here to try and help.

[Rustsmith]

Sunday, June 25

Welcome to

Trophyman, whose RLS has progressively gotten worse over the past several years. He is in his mid-fifties and is frightened and scared for his quality of life going forward. He is also concerned on how this will impact his ability to do his job due lack of sleep and side effects from the medications.

There are always new ways to manage your RLS. If you would like suggestions on alternatives to your current medications, just post a message and tell us what you are currently using.

[Rustsmith]

Tuesday, June 27

Welcome to

fsilos, who has had RLS since childhood. fsilos was officially diagnosed in fsilos's early 30's. In fsilos's 50's, rls improved and fsilos thought that would be that. Unfortunately, at age 60 fsilos was diagnosed with pre-multiple myeloma (called smoldering myeloma) and 6 months ago it became Multiple Myeloma and so fsilos has been having chemo/treatment for the past 4 months. Something about the drugs fsilos was given combined with low hemoglobin caused the RLS to return furiously. fsilos will be having a stem cell transplant around July 17 (requiring a hospital stay of 2-3 weeks) and fsilos extremely concerned about being confined to a bed, unable to actually get out of the bed. fsilos has always avoided RLS medications because of the rebound issues but is now wondering if there is anything that will help.

You can read all about the latest recommendations in this publication: https://www.mayoclinicproceedings.org/a ... 0/fulltext

The obvious first step is to address the anemia with an iron infusion. The catch is that it takes a month or two for the iron to get into the brain where you need it. The second level meds (gabapentin, Horizant and Lyrica) do not have a rebound (augmentation) effect, but can make you very sleepy the next morning. And the final class of meds, the opioids, always work but it is difficult to find a doctor who is well enough versed in the treatment of RLS to be willing to prescribe them. If you have any questions, feel free to post a message so that we can try to help you get through this.

[Polar Bear]

29th June 2003

Welcome today to

Cooper9dog who has difficulty getting to sleep, getting back to sleep after waking, and relaxing in the evening. Result.... always tired.

Difficulty with sleep is often what drives most sufferers to seek help. We have all been where you are. Please make a post and feel free to ask questions. Tell us what medications you have tried, if any, and what has or has not helped. We can then work from that and do our best to help you.

[Polar Bear]

Friday 30th June 2023

Welcome today to

bbmine44 who is being kept awake at night and has to get up and goto computer for some 2 hours and then can go back to sleep.

Please do post and tell us how what you are doing to manage your rls symptoms. We can then try and help you find better control and hopefully better sleep.

[Rustsmith]

Friday, June 30

Welcome to

redbyrd, who had had RLS for 15 years and has gone through all the trials and tribulations resulting from the lack of knowledge concerning RLS. The Foundation has provided excellent information to supplement sometimes the lack of knowledge of medical practitioners. Now 81, redbyrd is just entering a time when lots of medical issues will be confronted. The Foundation Discussion Board will be an important source of information.

All that you need to do is post a message with any questions that you have so that we can do our best to help you out.