JULY 2024 NEW MEMBERS

[Polar Bear]

Monday 1 July 2024

Welcome today to

AnnieM who developed RLS 6 months ago. At first it was very severe, but after much research and taking multiple vitamins, etc. it is currently much milder. However, each night is now an unknown which causes significant stress, and AnnieM's mental health has been greatly affected for the worse.

It can be very difficult to control RLS with vitamins. Stress is something we are all aware of. Have you seen your doctor and has a Ferritin Serum Test been carried out. A 'normal' result may be indicated at 20+ but this is not high enough for an RLS sufferer, we generally need it to be up around 100. This in itself may sometimes help the symptoms but not usually on it's own if they are severe. Take a look at the link in my signature which us very useful for discussion with your doctor as well as for your own information. If you will make a post giving background treatment information we will do our best to help.

[Rustsmith]

Monday, July 1

Welcome to

Cac, whose RLS stops her from doing anything! Her entire body is restless. She also has Parkinson’s, brain fog and her body is tired. She is not the same person she used to be.

Those with Parkinsons and RLS require a little bit different care than those with just on disease and not the other. If you have any questions specific to RLS, just post a message and we can try to help.

[Rustsmith]

Tuesday, July 2

Welcome to

Rene, who doesn't go to evening events, doesn't sleep well. She is looking for information figuring out food triggers and medications that help or those that make it worse.

If you don't find what you are looking for in our files, just post a note and let us know how we can help.

[Polar Bear]

Thursday 4 July 2024

Welcome today to

Barbara B who has had some degree of RLS for 5-10 years, but over the last year or has gotten MUCH WORSE. It's in her arms and legs. The movements get violent and some nights she doesn't sleep at all. Meds that make her sleepy don't control it any more. Most of her nights are miserable and she is tired all the time. Barbara B went to one neurologist and was very displeased. Now needs to find an RLS expert ASAP.

As you have found from your own experience not all neurologists understand how to treat RLS. Are you at present taking any prescription medications. Is your GP understanding. Many of us have had to train our GPs but of course they have to be willing and want to help us. Take a look at the link in my signature, this document makes for very useful discussion with your doctor. Best to ask our doctors.... what do you think of this information prepared by leading RLS experts, rather than saying... look what I found on the internet. If you will make a post providing details of your treatment we will do our best to help you.

[Rustsmith]

Thursday, July 4

Welcome to

Joanger, who is interested in knowledge sharing and access to a wealth of information and experiences shared by other members.

If you don't find what you are looking for, just post a message and let us know how we can help.

[Rustsmith]

Thursday, July 4

Welcome to

Vadowa, who wants to connect with like-minded individuals who share similar interests and goals.

Just post a message to get a discussion started.

[Rustsmith]

Thursday, July 4

Welcome to

Xavina, who wants to actively participate in discussions and events that foster a sense of belonging and community spirit.

Just post a message to get a discussion started.

[Polar Bear]

5 July 2023

Welcome today to

Emom01 who is experiencing symptoms of RLS. She would like to discuss her symptoms and remedies with others. Specifically related to running.

Are you taking any medications to relieve your symptoms. Just make a post giving some details of how you are managing your symptoms and feel free to ask questions.
We will do our best to help you.

[Rustsmith]

Friday, July 5

Welcome to

Cerulean, whose RLS has significantly effected her quality of life. She is feeling alone with the disease.

As the Foundation's motto goes, You are not Alone. Everyone on this discussion board understands what you are experiencing and has gone through it too. If you have any questions or would simply like to vent, please do so by posting a message on the board.

[Rustsmith]

Friday, July 5

Welcome to

Capndan, who on many nights only gets two to three hours of sleep. This has exacerbated Capndan's high blood pressure and heart arrhythmia. Recently, Canpdan had been having difficulty focusing and had to stop driving.

Is you doctor treating your RLS? If so, can you give us an idea of what you are doing to manage your RLS? There are effective ways to manage RLS so that you can regain some of the quality of life that you are missing.

[Polar Bear]

6th July 2024

Welcome today to

gohoos1998 who has periodic limb movement disorder and RLS. gohoos1998 wants to learn more about alternative treatment being opposed to taking DA's and having already tried Gabapentin and Lyrica.

A high percentage of RLS sufferers also have periodic limb movement disorder. Have you had your Ferritin Serum level checked, anything above 20+ can be considered as normal but us RLS sufferers fare better if our levels are up around 100. This test needs to be specifically requested as it is not part of a usual blood panel.
To learn more about alternative treatments take a look in the Non Prescription/Supplements/Diet Forum. Please do ask any questions you may have.

[Polar Bear]

6th July 2024

Welcome today to Cee who wants to find information on what has worked for others. Cee wants to hear how others have handled situations such as RLS augmentation and surgery.

There useful information in the Augmentation Forum. There is a pamphlet on surgery produced by the RLS Foundation and you will find this on their web site.
The easiest way is to make a post yourself in the Just Joined Forum. If you give some background information on your RLS treatment, ask questions, we will do out best to help you.

[Rustsmith]

Saturday, July 6

Welcome to

gibsonmissy, who has suffered for about 40 years, and as she ages the RLS is getting worse. She dreads afternoons and night so much due to the severity of RLS. She is hoping to find ideas that help along with her medication.

If you have been taking a dopamine agonist (pramipexole or ropinerole) for several years there is a good chance that your afternoon RLS and the worsening is due to augmentation. This is especially true if your doctor has been increasing your dose. If so, you will need to change to a different class of medication, which is difficult to do and requires the guidance of a doctor who is very knowledgeable about augmented RLS. To learn more, read the document that the link in my signature points to or just post a message with any questions that you have.

[Polar Bear]

Sunday 7 July 2024

Welcome today to

JLECH75 whose RLS makes it hard to attend any events of prolonged sitting. Can't even consider going to see a movie in a theater. WAY too uncomfortable. Over the last year JLECH75 has started experiencing SEVERE pain in the bilateral lower legs. Has had about a dozen lab tests done as well as doppler studies and NOTHING! It dawned on JLECH75 that it could be the RLS and so would like to chat with others with RLS and find out others symptoms and maybe how they manage theirs,

We all understand how the burden of coping with RLS symptoms affects everyday life in a negative fashion. It is good that you have had lab tests done and that nothing wrong has been found.
However, you still have your severe pain in your lower legs. Does this pain occur at any time of the day or more at night, do you know does it happen while you sleep. It just might be Periodic Limb Movement Disorder while awake. PLMD (if it is such) is treated like it was RLS. Caffeine often intensifies PLMD symptoms. Caffeine-containing products such as chocolate, coffee, tea, and soft drinks should be avoided. Also, many antidepressants have a negative affect.
To chat with others just start a thread giving background information and ask questions.

[Rustsmith]

Tuesday, July 9

Welcome to

Ginago, whose brother suffers from severe RLS and is incarcerated so he gets no support. She is trying to help him find ways to educate the doctors and get some help.

The number one best way to educate his doctors is to provide them with a copy of the Mayo Clinic Algorithm publication that the link in my signature points to. The document was prepared specifically to provide guidance to doctors who are not familiar with treating RLS. If you have any other questions, feel free to post a message so that we can try to help.