JUNE 2020 - New Members

[ViewsAskew]

3rd of June, we welcome cduncan257.

cduncan257 has had RLS for 20 years and find that it affects so much of their life.

It certainly can, can't it? We do have some strategies that may help, starting with dietary approaches. Some people find that the New to RLS topioc can be helpful. viewtopic.php?f=2&t=1068

Also, at any time, write a post and ask questions or reach out for help. We're a pretty supportive bunch here.

[Rustsmith]

Wednesday, June 3

Welcome to

ReadyToSleep, who has suffered from RLS since early adulthood and it is becoming more severe as time goes by.

First off, I love your login ID. And as for RLS becoming more severe as time goes by, that is very unfortunately something that most of us experience. If you are comfortable sharing, we would love to hear about what you do to manage your RLS and to answer any questions that you have.

[Rustsmith]

Wednesday, June 3

Welcome to

Seekingrelief, who is hoping to find relief and get advice from fellow sufferers.

We can definitely help on both accounts. If you will post a note giving us an idea of what you are currently doing to manage your RLS, that will give us an idea of where we should start with our suggestions.

[badnights]

Today we are joined by Dahlia, who has suffered with this disease for over 50 years but was only diagnosed about 20 years ago. Dahlia has been chronically tired and hesitates to make plans. Working full time is a challenge, and sitting on planes is dreadful. Dahlia recently started on CPAP after using an oral appliance for years, and although sleep is better, leg pain is not. Dahlia is also trying NYS Medical Marijuana and feels that the CBD has helped with leg twitching and movement and THC has helped a bit with insomnia. Dahlia is getting discouraged and sick of it all.

Dahlia, we hear you! It is so very discouraging at times. It can seem like a constant fight. There are many members on this board who will understand how you feel, because we've all been there. Are you taking anything besides the medical marijuana for the RLS/WED? If you're taking a dopamine-type medication, it could be making the disease worse. We try different things to get a better sleep - some of us use hypnotic sleeping aids, others use marijuana, others using gabapentin or related meds, or combinations of those things.

I hope you will find comfort here; and I know you will find ideas for how to improve your quality of life. Please start a Topic and tell us more about yourself. This particular Topic is locked, but the others are open, so you can also comment in an existing Topic.

[Rustsmith]

Thursday, June 4

Welcome to

JohnD, whose RLS has had a profound impact in every aspect of his life since he started suffering as a teenager.

If you would like for us to provide you with some suggestions for improving your quality of life, post a note telling us about what you are doing to manage your RLS so that we can offer you some customized comments.

[Rustsmith]

Friday, June 5

Welcome to

sarah, whose situation started as mild restlessness in her legs at age 26 has now developed into restlessness consuming the entire right side of her body. Her symptoms vacillate between mild twitching originating in her right flank to full-blown "bugs under the skin" that attacks her entire right side, including face, teeth, and neck. She has yet to find someone else who shares these symptoms and her doctors don't have an answer for what exactly she has. She is hoping someone here can relate and share their story.

One of the conditions that you need to have for the diagnosis of RLS is that the twitching and bugs under the skin has to be relieved by moving the muscles that are having issues. If moving around resolves the symptoms, then there is a good chance that it is RLS. You can find more by doing the recently approved self assessment questionnaire that you can find at https://biolincc.nhlbi.nih.gov/media/st ... :19.282153

[Rustsmith]

Sunday, June 7

Welcome to

Leej, whose RLS has hanged life in so many ways that it is hard to single out just a few.

We would love to be able to offer you some suggestions for gaining control of your RLS if you will post a note telling us what you are currently doing to manage and asking any questions that you have.

[Polar Bear]

Monday 8 June 2020

Welcome to:

Robkins - who has days of no sleep without medication.... no sitting or laying; only standing & walking for hours upon hours... can't drive or ride for very long in vehicles. Got Class A RV so can travel. Can't fly. Etc, etc. Fortunately, doctor found right dose of Ropinirole for nights & tramadol for daytime control.

We are so glad that your doctor has found the medication and dosage that works for you. Does this mean that you can once again sleep, drive and relax etc. We would like to hear more of your journey with RLS and what it took to eventually reach reasonable medication.

[Polar Bear]

Monday 8 June 2020

Welcome to:

hctaylor - who has RLS at night and gets up several times at night. Sometimes gets in hot water and that relieves the RLS. Now is taking iron and RLS is better.

Its good to hear that iron is helping your rls. Many of us find that hot water helps and indeed, some of find that cold water is best.
Please feel free to post, start a thread, or join a thread. We are always happy to hear from new members and to help where we can.

[Rustsmith]

Sunday, June 7

Welcome to

hctaylor, who has RLS at night and gets up several times at night, sometimes to get in hot water and that relives the RLS. Now hctaylor is taking iron that has helped.

Both iron and hot water soaks are approaches that many of us use, even those of us with very severe symptoms. Please feel free to post a note asking any questions that you have. We would love to be able to help.

[Rustsmith]

Sunday, June 7

Welcome to

Robkins, whose RLS results in days of no sleep without medication.... no sitting or laying; only standing & walking for hours upon hours... Robkins can't drive or ride for very long in vehicles, got Class A RV for travel. Can't fly, etc, etc. Fortunately, Robkins's doctor found the right dose of Ropinirole for nights & tramadol for daytime control.

Did your doctor tell you about Tramadol ER, which is a once/day med that might allow you to get off of the ropinirole? If you are interested in some suggestions, you can post a note telling us about the doses of each that you take or simply asking any questions that you have. We may be able to offer you some help.

[ViewsAskew]

It's late Tuesday, the 9th of June, in my part of the world, as we welcome bethsills.

bethsills is experiencing augmentation - a horrible place to be. bethsills has had symptoms since they were a teenager and now it is 24/7.

My heart breaks for you! Please, do start a new post and tell us about your situation. A lot of us have gone through it and we hopefully have some ideas on proven methods to help you get through this.

[Rustsmith]

Wednesday, June 10

Welcome to

ppage004, whose RLS has impacted his life enormously; it's an unwelcome companion that's weaved it's way into into every aspect of life, 24/7/365. No matter where he goes, or what he's doing, it's there - controlling his body and mind in the most unpleasant of ways.

We would love to be able to offer you some suggestions for regaining control of your life. If you will post a note telling us what you are doing to try to manage your symptoms, we should be able to offer some things to discuss with your doctor.

[Rustsmith]

Thursday, June 11

Welcome to

tamsden, whose RLS has been affecting life for over 30 years, but has now worsened...from once in a great while (usually from consuming salt or sugar) to, currently, every day, sometimes all day. tamsden's sleep has been deeply affected and has not slept for over an hour and a half at a stretch for nearly a year with maybe 4 hours, total, per night. So tamsden is tired...

If you would be willing to post a note telling us what you are doing to manage your RLS, we can probably provide you with some suggestions to discuss with your doctor that will help you get more sleep.

[Rustsmith]

Friday, June 12

Welcome to

khunt16, whose RLS causes her to no be able to sleep. Her medication Ropinirole also keeps her awake. So she is taking "Rested Legs", which helps some.

We would love to be able to provide you with some suggestions to get more sleep. If you are willing to post a note telling us the dose of ropinerole that you are taking to give us a better idea of where you stand.