December 2023 - NEW MEMBERS

[Rustsmith]

Sunday, December 3

Welcome to

marjaba, who has had RLS for at least 5 years. It disturbs sleep, results in fatigue, sometimes poor mental and physical functioning during the day. Imarjaba feels 10 years younger (now age 76) with a good nights sleep.

What are you currently doing to manage your RLS? If you would like suggestions for improvement, just post a not that tells us a bit more so that we know where to start with our suggestions.

[Rustsmith]

Monday, December 4

Welcome to

Steerpeykpe, who has had moderate restless legs for years. Steerpyekpe is now taking a dopamine agonist and trying to learn as much possible about the condition and treatments.

Your best bet to learn about RLS is to read through the document in the link to my signature. It lists all the possible treatments (and their drawbacks). Or, you can simply post a note with any questions that you have.

[Polar Bear]

Monday 4 December 2023

Welcome today to

Ianrussell who travels quite often and RLS on airplane rides and car rides have taken the joy out of his experiences. Augmentation during prescribed treatment ( ropinerole and Pramipexole ) has made his symptoms hard to control and he is searching for alternatives.

Travelling/long journeys can be very difficult for RLS sufferers. Is your doctor supporting you during your augmentation and are you weaning off the ropinerole/pramipexole. Coming off these drugs is the only answer, weaning carefully and hopfully with the support of other medication such as a low dose opioid and/or gabapentin/pregabalin. It is difficult but so many of us have successfully done it.
Take a look through the Augmentation Forum for useful information. Also the link in my signature will be useful. If you will make a post and tell us how you have been managing your symptoms we will do our best to try to help. Also, make sure you have had your Ferritin Serun levels checked and that you know what that level is. For example, normal may be 20+ but for us RLS sufferers we need our Ferritin Serum to be up around 100.

[Rustsmith]

Friday, December 8

Welcome to

Howy 123, whose RLS drives him round the bend, but he knows now after 40years how to keep on top of it.

We are glad that you have figured out to stay on top of your RLS. If you have any questions or would like to tell us about what you do so that others might benefit, all you need to do is post a message.

[Polar Bear]

Friday 8 December 2023

Welcome today to

Linda 7789 who has symptoms every day which are extremely unpleasant.

Unpleasant often is barely adequate to describe rls symptoms. We hope you find helpful answers to some of your questions. Please feel free to post in the Just Joined Forum giving us a potted history of your rls treatment and we will do our best to help.

[Rustsmith]

Friday, December 8

Welcome to

Linda7789, whose RLS symptoms are every day and extremely unpleasant.

If your symptoms are occurring every day, during the day and you are currently taking a dopamine agonist (pramipexole, ropinerole or rotigatine) then you may be experiencing Augmenation. Augmentation is a side effect of the dopamine meds that is specific to RLS, so most doctors are not familiar with it. To learn more, read through our forum on augmentation or simply post a message with any questions that you have.

[Polar Bear]

Sunday 10th December 2023

Welcome today to

DuskLarceny whose Restless legs syndrome has ruined every aspect of his life and he is feeling defeated. Looking for new ideas.

Reading through the Just Joined Forum will provide information as will the Augmentation Forum if you feel this would apply to you. Especially if you have had treatment with Ropinerole or Pramipexole.
Have you had your Ferritin Serum checked. This is important and is not done in a routine blood check, you have to request it. Us RLS sufferers need our Ferritin Serum to be up around 100. Always ask what your level is and don't accept a response of 'normal' because normal can be anything from 20+. Please post if you feel like it, feel free to ask questions and we will do our best to try and help.

[Rustsmith]

Monday, December 11

Welcome to

JoannePG1, who has RLS. It comes and goes, and her movement disorder specialist suggested iron tablets since her Ferritin was low. The iron that she has is causing GERD and other GI symptoms, so she wanted to see what types of iron others are taking.

You are probably taking an iron sulfate product, which is what most of us take. However, iron sulfate has an extensive history of causing stomach problems for many. For these, there are several other iron supplements which often go by names such as Gentle Iron. These are usually not iron sulfate, but are compounds such as iron gluconate or iron bisglycinate. These products will be more expensive, but are easier on the stomach. The key will be to take a dose that delivers 65 mg equivalents of iron. This will appear in the fine print on the product label and may require more than one tablet. And if your doctor advised you to take vitamin C along with the iron supplement, that is not required for the gluconate or bisglycinate products.

And if you have any questions at all about RLS, please feel free to post a message and ask. We are here to help and provide whatever support you need.

[Polar Bear]

11 December 2023

Welcome to

george s who is 76 years old and retired. RLS runs in his extended family though not rampant. He is currently taking Ropinirole for his RLS. The dosage has been recently increased and he needs to learn more about RLS treatments and medications as well as more general information about RLS. His chiropractor has recommended he uses this site to begin.


You are right to want to learn as much as possible about RLS and the various treatments and medications. You say you are currently taking ropinerole and that it has recently been increased. I'm assuming the increase was because of uncontrolled symptoms. Be very careful about increasing Ropinerole, the max dose recommended by most RLS Experts is 1mg daily regardless of what it says on the leaflet in the medication packet. This max dose of 1mg is to try to avoid augmentation. Have you had a Ferritin Serum test done. Your level needs to be upwards of 100 and not the 20+ which is generally accepted as normal. You need to have this test done and it is not done as a part of a standard blood panel,you have to request it.
I suggest you make a post in the Just Joined Forum and give us details of your RLS management at present, what medications you have been prescribed and what has and has not worked, including what dose Ropinerole you are taking at present. With some information it gives us a starting point to try and help you.

Out of interest, is your chiropractor involved in the treatment of your RLS.

[Rustsmith]

Tuesday, December 12

Welcome to

Lynette, who shares RLS with a sibling. She was I the first, since approximate age 12. She gets it when feeling confined or bored, usually at night and went through times of kicking the living room floor all night. She is afraid I’ll get it when at a performance, lecture, or unstimulating social activities —- almost always while seated.

Talk to your doctor about getting a small prescription of carbidopa/levodopa that you can use immediately before performances. This is a fast acting form of dopamine that should not be used continually, but is fine for occasional situations like performances or airline flights. It acts fast and doesn't last, but should get you through the performance (or movie). It should NEVER be used continually because it will very quickly cause augmentation.

[Polar Bear]

14 December 2023

Welcome today to

Bee who for periods of 6 - 8 weeks will only get 2-3 hours sleep per night. Other times she can sleep fairly well. She is seeing a neurologist and is on more medications than she would prefer.

Have you had your ferritin serum level checked. This is a blood test that has to be requested. 20+ is considered a normal level but us rls sufferers need the level to be up around 100. This is important. If you would like to make a post in the Just Joined Forum giving us details of how you are managing your symptoms we will do our best to help.

[Rustsmith]

Thursday, December 14

Welcome to

Dx12-23, who was given the diagnosis yesterday along with a diagnosis of sleep apnea. She is scheduled for CPAP titration and is hopeful the cpap will help her sleep issues. She is on week 4 of a CBT for insomnia book and it seems to have helped a lot also. She also was able to attend a local support group, which also helped a lot.

We are here to help answer any further questions that you have. Although sleep apnea is not something that is covered by this discussion group, many of us use the machines, so feel free to ask a few questions there as well.

As for your RLS, did the doctor order blood work to determine your ferritin level? Often, mild to moderate RLS can be helped using an oral iron supplement. But this should only be done under the supervision of a doctor since too much iron can be harmful.

[Polar Bear]

Friday 15th December 2023

Welcome today to

Bill's Fan who has been taking medications for RLS and wants to learn more. RLS runs in his family. This site was recommended to him as a source of information.

We are glad you found us. Please take a read through, especially the Just Joined Forum. Feel free to ask questions.

[Polar Bear]

Sunday 17 December 2023

Welcome today to

Smileycarr79 who has have struggled with RLS from a young age and has been on treatment for 4 years now. Condition is worsening and doctors are clueless. Needs support from other people going through the same thing.

If you have been on treatment for 4 years and your condition is worsening is it possible you are prescribed a DA such as Requip/ropinerole or Pramipexole/Mirapex. If so it is possible that you are augmenting. Has your doctor checked your Ferritin Serum level which should be up around 100 and not at at the 20+ level which can be considered normal. This blood test is not done as routine and needs to be requested.

Take a look in the Augmentation Forum and see if any of this sounds relevant. When you feel ready just make a post giving us a history of your rls treatment including medications/dosages and this will give us a start to try and help you.

[Polar Bear]

Sunday 17 December 2023

Welcome today to

CindyP who has had RlS for over 30 years, now so severe she can't sit still or take a nap.

Cindy, we have all been there. Your treatment could actually be making your rls worse if you are taking a DA such as ropinerole or mirapex. This is called augmentation and there is information in the Augmentation Forum. Do you know your Ferritin Serum level (for rls sufferers we want it up around 100), a blood test not normally done as part of a blood panel, it needs to be requested. Please feel free to make a post and ask questions. A bit of history regarding your treatment would give us a head start in trying to help you.