MAY 2025 - New Members

[Rustsmith]

Thursday, May 1

Welcome to

Gracely, whose 13 year old daughter has been diagnosed by the pediatric pulmonologist at the local hospital medical center.

Treating pediatric RLS is a bit different than treating adult RLS. Please take a look at the pediatric section of this recent American Academy of Sleep Medicine publication https://jcsm.aasm.org/doi/10.5664/jcsm.11390#d1e2062as well as the information in the Mayo document that the link in my signature points to.

There is also a special populations forum in our discussions that often addresses pediatric issues and you are welcome to post any questions that you have there.

Finally, the RLS Foundation has several publications about pediatric RLS. Some are available to the public and others require a small membership fee to gain access. If that fee is too much for your budget, give the office a call and ask about a complementary membership. If you call be sure to mention that this is for your daughter because one of the CEO's daughters also has RLS.

[Rustsmith]

Friday, May 2

Welcome to

Kckbarnes7, who has been experiencing RLS for about 2 years and is unable to sleep through the night. The only relief kckbarnes has found is to soak in a warm to hot bath, sometimes multiple times a day.

Is your RLS currently being treated by a doctor? Have you had blood tests to determine your ferritin level? Do you know your ferritin number and is it over 75?

There are many ways to treat RLS other than soaking in hot water. The document that the link in my signature may help. You are also welcome to post a message with any questions that you have so that we can try to help.

[badnights]

gv67 has not yet taken any medicine but has joined the board as his/her sleep become more affected.

gv67, this is the right place to be! Browse thru the posts here and feel free to ask questions.

the very first thing you should do is get an iron panel that includes ferritin concentration. You'll also get serum iron, transferrin saturation (or saturation index), and TIBC. If transferrin saturation is above 45%, then you probably shouldn't take iron. If it's less than 45, look at your ferritin. If ferritin is below 100, you probably should be taking supplemental iron (unless you have a relatively rare hereditary condition that leads to iron overload); if ferritin is above 100, you don't know if you should take supplemental iron or not. That's just a brief summary of a complication subject. Most doctors are not aware that each organ has its own level of iron, and the brain especially can have a completely different iron concentration than the blood. In WED/RLS, it is thought that brain iron is low.

[Rustsmith]

Monday, May 19

Welcome to

Butterfly7, who is an suffer of RLS and PLM for 35 years. She has been registered on this site before, but it’s been several years since she has been here. She wants to add some information and to research other information.

We are happy to see you back and look forward to your posts.

[Rustsmith]

Saturday, May 23

Welcome to

fethiey, who have questions about Injectafer

Several of our members have experience with the various iron IV meds. If you will post your questions, they can probably answer them.

[Rustsmith]

Sunday, May 25

Welcome to

taradiane, who is 49 years old. Her first symptoms started when she was 11 but only once or twice a year. When she hit her 30s it really started to ramp up. It's ruined so many things for her that she used to enjoy - can't even drink coffee anymore. It caused issues for her at work, and she has other medical issues for which she takes meds that exacerbate RLS, meaning she had to increase the RLS meds to try and balance it all out.

If there is anything that we can do to help or to provide information, please just post a message so that we can try to answer them.

[Rustsmith]

Tuesday, May 27

Welcome to

lwake, who is 68 and has had RLS since childhood. lwake is currently trying to wean off of Ropinirole and is wondering about others' experience with this.

A number of our members have weaned off of ropinerole and even more off of pramipexole. We would all be happy to share our experience if you can post a message and tell us what you are interested in knowing.