January 2024 - NEW MEMBERS

[Rustsmith]

Monday, January 1

Welcome to

mrsretromodern, who has had RLS (self dx) for about 10 years. She used to have legs "jerk" when just falling asleep. She started SSRI (Lexapro) about 9 mos ago. Her RLS transitioned to creepy crawly deep aches in feet and toes and severe difficulty falling asleep last 4 months. She is desperate for relief. She takes magnesium, exercises, and has a physically demanding job. She hasn't taken iron yet. She is looking forward to help via this forum.

First off, a side effect of all SSRI's is restlessness. For those of us with RLS, an SSRI (or SNRI or TCA) will make our RLS worse. You should talk to the doctor who prescribed the SSRI about treating your RLS. His/her first step should be to do a blood test to check your ferritin level and then start you on an oral iron regime (65mg equivlents of iron per day along with vitamin C and taken on an empty stomach). You might also discuss switching from Lexapro to Wellbutrin, which is a different type of anti-depressant that does not trigger RLS symptoms.

To learn more about treating RLS, take a look at the document in my signature and feel free to post a message with any questions that you have.

[Rustsmith]

Tuesday, January 2

Welcome to

AndyBronton, who has suffered from RLS all his life, as did other members of his family. He has had relief over the last year by taking magnesium and avoiding dietary triggers.

We are happy that you have found a way to manage your RLS. If magnesium and diet become less effective as you grow older, you may need to add other treatments, such as an iron supplement. You can find out about other treatments in our forums. In the meantime, if you have questions, feel free to post a message.

[Rustsmith]

Thursday, January 4

Welcome to

JT62, whose RLS started 33 years ago and has recently started getting worse. The expense and anguish has been high. JT is looking for any kind of help.

You are welcome to post a message here with any questions that you have. We would be happy to offer suggestions for changing your treatment, but would need to know what you are currently doing to manage your RLS. You can also read through the document that the link in my signature points to in order to find out the various treatments used by the leading RLS experts.

[Rustsmith]

Thursday, January 4

Welcome to

Mrs Weary, whose RLS has changed how she lives her life. She cannot do the normal things like, sit, sleep,travel without medication and since her doctor is retiring, she I needs help since no other doctor will accept her.

If you are a member of the Foundation, take a look at the article that I wrote in the Spring 2019 issue (page 10). It gives suggestions on steps that you can take to find a new provider (the article is based upon personal experience). It takes loads of time on the phone calling every doctor in the area who accepts your insurance, asking to interview a nurse and then hopefully finding a doctor that is either knowledgeable or willing to learn. My doctor retired two years ago and it took me a year to find a PCP who was willing to treat my RLS and other health conditions over the long haul.

If you are not a member, the cost is only $40/yr and if you cannot afford that, they have memberships available if you give them a call and explain your situation.

[Polar Bear]

5 January 2024

Welcome today to

spombo who has suffered with RLS for over 40 years.It seems to be hereditary, father and 2 sisters also have it.

Have you been successfully treating your symptoms? You will find plenty of information on the forums which we hope you will find useful. If you have any questions please do post and we will do our best to try and help you.

[Rustsmith]

Friday, January 5

Welcome to

JCC, who is trying to cope with her RLS without medicine and looking for advice for what has helped others.

Take a look through our forums on Physical Treatment and non-Prescription medications. You will find a number of suggestions of things that help and many that do not. Two that you may want to investigate are oral iron supplements (65mg equivalents/day with vitamin C) and a new device that requires a prescription named NTX100 ToMAc (but it is expensive).

[Polar Bear]

6 January 2024

Welcome today to

Valeriej21 whose Rls - primary refractory - has taken away her life. She lives her life around it as managing the symptoms - that are all day long full Body - is difficult.

Please make a post telling us how you are presently managing your symptoms. I wonder are you taking a DA medication such as Pramipexole/Mirapex or Ropinerole/Requip which can eventually cause augmentation. Has your doctor checked your Ferritin Serum (this is important) and what is the level, do not accept that 20+ is normal, an rls sufferers needs their level to be up around 100.
Please make a post so that your medication (if any) can be discussed and hopefully we can find a way to help you.

[Rustsmith]

Sunday, January 7

Welcome to

WSK, whose RLS is now WBRLS - Whole Body RLS. It is a nightly challenge and it seems to be getting worse, so WSK is hoping to find something on here that might help.

Many of us have RLS that has spread beyond our legs. Are you currently taking a dopamine agonist that might be causing augmentation? Has your doctor done blood tests to check your ferritin number? There a many things that we could suggest, but we need you to post a message that gives us a better idea of what you are currently doing so that we will have an idea of what to suggest.

[Rustsmith]

Tuesday, January 9

Welcome to

Roughrider, who Well, is 38 and has had RLS since his early 29s, stemming all the way back to his paternal great grandfather. He has completed most therapies and either with one of the leading researchers for RLS, however, still struggles and hopes to find a great benefit in discussing RLS with others.

We look forward to hearing more from you. Many of us also struggle with control of our RLS, so we can understand your situation quite well.

[Polar Bear]

Wednesday 10 January 2024

Welcome today to

Halster who says just as it has affected thousands this ailment is very disruptive to a healthy and productive life. Sleep deprivation is the bottom line and has many repercussions to Halster and those around.

Sleep is usually what drives a sufferer to seek help. Everyone here will understand how you feel. Please feel free to ask questions and we will do what we can to try and help.

[Rustsmith]

Thursday, January 11

Welcome to

Sunflower19, who has had RLS for about 12 years now. She has been on ropinirole for about 10 years and it kept it in check until about a year ago. She is currently seeing a neurologist who is trying to wean her off of ropinirole because of augmentation. This disease can be relentless. It's hard to relax because my legs start going whenever I sit down and rest.

Tapering off of ropinerole without the use of an opioid can be extremely tough, especially the final step to nothing. Have you discussed with your doctor what treatment you will try after you get off of ropinerole? If it is an opioid (which is what many of us had to do), then you might as well start now so that you won't have to suffer.

Please post a note and tell us more and keep us updated on how the ropinirole taper goes.

[Rustsmith]

Friday, January 12

Welcome to

Stjbaker, who never knows what type of night it will be. Some nights are good, some nights it’s bad. Stjbaker needs to find more info on this.

If you can't find what you need in our existing postings, post a message that tells us more about your RLS so that we will know where to start with suggestions or answers to your questions.

[Polar Bear]

Saturday 13 January 2023

Welcome today to

Cori from Sac who has had MS for about 15 years and RLS nearly as long. After receiving proper MS treatment, Cfs was stuck with RLS with no remedy. For the past decade would only get 3-4 hours of sleep a night which caused severe mood swings and emotional problems. For years Cfs would debate which is worse, RLS or MS.

We are sorry things have been so difficult. Is your doctor supportive of your RLS and willing to cooperate regarding treatment. Have you had your ferritin serum level checked, it should be up around 100 and do not be accepting of being told that it is 'normal' because 20+ can be considered normal but us RLS sufferers need it much higher. If you have any questions please post and give us some details of your RLS treatment (if any), what you have tried and what has or has not worked for you. This will help us to try and help you.

[Rustsmith]

Saturday, January 13

Welcome to

bernardj, who has been diagnosed with the syndrome.

Do you have any questions? Did your doctor perform blood tests to check your ferritin levels? Are you taking any medication at this point?

We would love to try to help you out, just tell us how.

[Rustsmith]

Sunday, January 14

Welcome to

anthony, who I has had RLS for many years, poor sleep causing related day time problems such as concentration,irritable, etc

Please feel free to post a message with any questions that you have, or simply join one of our existing discussion threads.