NOVEMBER 2022 - New Members

[Rustsmith]

Wednesday, November 2

Welcome to

Sufferer, who needs to get rid of her RLS. She has pain from RLS every day.

Unfortunately, RLS is a chronic condition with no cure. Fortunately, there are a number of very effective treatments that can manage the symptoms. You can find discussions of many of these in our forums OR we can provide you with suggestions to discuss with your doctor if you will give us an idea of what you have tried or are currently doing for your RLS.

[Rustsmith]

Thursday, November 3

Welcome to

Pozzywallah, who wants to talk to fellow sufferers and learn about coping strategies.

This is the place to do both of those things. All that you need to do is post a note with any questions you have or simply join one of existing discussions.

[Rustsmith]

Saturday, November 5

Welcome to

Eckart, whose husband has suffered from RLS for nearly 10 years. The timeframe for his symptoms seems to be broadening. He has run the spectrum of drugs from gabapenten, pregabalin….dopamine agonists to oxycodone. Iron deficiency keeps coming up, but she doesn’t find info specific to RLS.

If you use our search function and search for iron IV you will find loads of comments. Here are also a couple of references that discuss iron with respect to RLS. https://www.mayoclinicproceedings.org/a ... 0/fulltext
https://pubmed.ncbi.nlm.nih.gov/15165528/
https://www.karger.com/Article/FullText/518911

Or feel free to post a message with any questions that you have. We are here to help.

[Rustsmith]

Sunday, November 6

Welcome to

dehojopeg, who is looking for help/suggestions on how to control the ever increasing RLS problem. Her doctors have stated she is on the maximum dosage or Ropinirole. She has MS and a bad back which makes walking/standing difficult.

Have your iron levels been tested, especially your ferritin level? The first mode of treatment these days is supposed to be iron therapy to get ferritin levels to at least 75. Next, have you tried gabapentin or Lyrica for your MS neuropathy? These are the second level of treatment (before ropinerole). If these do not work for your RLS, the only treatments left use low dose opioids. You can find out more about all of this in the following document, which even addresses the special issues with MS. https://www.mayoclinicproceedings.org/a ... 0/fulltext

When you finally stop taking ropinerole, it is imperative that you taper your dose down rather than simply stopping. There is a condition called DAWS (dopamine agonist withdrawal syndrome), which can cause permanent, untreatable damage if you abruptly stop from a dose that is too high.

And feel free to post a message with any questions that you have.

[Rustsmith]

Monday, November 7

Welcome to

karmamido,who asks "How has RLS NOT affected her life??" RLS has been with her for probably 20 years now, and continues to get worse. She needs (desperately!) to be able to "talk" with people who are in "her boat" out here in the middle of the ocean... floating aimlessly with no apparent sense of direction. People who do not have RLS just cannot seem to understand the nightly terrors this brings on.

We would love to have you join our discussions. If you don't find a topic that suits your needs, simply post a message and ask any questions that you have or that opens a new topic that suits your needs. We would love to help you out.

[Rustsmith]

Wednesday, November 9

Welcome to

Crystal Lake, whose RLS causes constant tingling in the legs, which is very uncomfortable especially when sitting.

Have you had your iron level checked, especially ferritin? Are you taking anything to help manage the symptoms? We may be able to help provide information that may help relive your tingling sensations.

[Polar Bear]

11 November 2022

Welcome today to:

Jgrimpel who can’t sleep, never knows when the rls will start. It has taken control. Jgrimpel needs people who understands.

We absolutely understand what you say, everyone here is an RLS sufferer and we want to help. If you make a post and tell us some of your history, your medications, what has and has not worked, this will give us a starting point to try and guide you to making things better.

[Polar Bear]

11th November 2022

Welcome today to:

pvicary who has suffered from RLS for over 10 years. Through the yrs it has progressed in time and severity. It has extended from legs to arms.

Please do make a post so we can try and help you. Is your doctor helpful, has your ferritin serum iron been checked, what about medications. Let us try to help you gain some control.

[Rustsmith]

Friday, November 11

Welcome to

luckyluke, who has just been diagnosed with RLS. Luke is a male, 55 y.o. He used to race triathlon from age 30 to 52, stopped with covid in 2020. RLS started in 2021. He still exercises, but high intensity makes his RLS bad. His sleep is very good, so far, but sitting and standing are not so good. He needs to move to feel better.
By joining the group, he hopes to find some solutions to this disease, how to cope with it and have a somewhat normal life. He finds reading our posts useful.

I used to be a marathon and track athlete, but had to give up competition at age 65. The problem isn't so much high intensity exercise as much as it is pushing yourself too far beyond you current fitness level.

Have you started on any sort of treatment now that you have been diagnosed? There are several treatments that work, but that have some downsides. You might also find this document very useful.https://www.mayoclinicproceedings.org/a ... 0/fulltext

[Rustsmith]

Saturday, November 12

Welcome to

Needslreleif, who feels so alone with this disease and needs to find others who have been helped.

You found a location where everyone has RLS and almost everyone has found some level of relief. Please feel free to post a message with any questions that you have or simply join in one of our existing discussion threads.

[Rustsmith]

Saturday, November 12

Welcome to

paintpas848, who cannot sit after 1 pm and cannot eat out with her husband or attend musical or other evening events.

Welcome to the club when it comes to not being able to attend events. However, there are ways to get some relief. If you are willing to tell us a bit about what you are currently doing to manage your RLS, we can probably offer some suggestions that will provide some relief.

[Rustsmith]

Saturday, November 12

Welcome to

cleverett, whose sleep quality is badly affected by RLS.

There are various RLS treatments that can help improve your sleep quality. We would be happy to explain more if you would be willing to tell us a bit more about what you are currently doing to manage your RLS.

[Polar Bear]

13th November 2022

Welcome today to:

jblackburn67 who has had RLS for 2 years. Currently on 4MG of Ropinirole. Worried about augmentation.

I am so glad you have found us. Your Ropinerole is way too high. The RLS medical experts would now consider Ropinerole 1mg to be the maximum daily dosage. You need to deal with this Ropinerole and we would like to help you wean off it. You are correct to be concerned about augmentation. Please do make a post telling us how your RLS has been deal with by your doctor. Have you had your Ferritin Serum checked (not done in normal blood tests). Please do post.

[Rustsmith]

Monday, November 14

Welcome to

lagunatic5, who has had our last for about 20 years and is looking for alternative medicines other than Mirapex.

There are a number of other options available, although convincing doctors to use some of them can be a challenge. Here is a document that was written for doctors to advise them of the current recommendations. https://www.mayoclinicproceedings.org/a ... 0/fulltext

If you have any questions, please feel free to post a message and we will do our best to answer them.

[Rustsmith]

Tuesday, November 15

Welcome to

dlourens, who has dealt with RLS for the past 10 years and is very interested in reading more about alternative treatments.

You can get an idea of non-pharmaceutical treatments that work (and those that don't) in our forums on Physical Treatments and Non-Prescription Medications. The ones that are most effective are iron supplements for those whose ferritin levels are below 100 and soaking in a tub of very hot water. And please feel free to post a message with any questions that you have so that we can try to answer them for you.