DECEMBER 2021 - New Members

[Rustsmith]

Wednesday, December 1

Welcome to

Mark S, who finds it difficult to sleep almost every night. The medication prescribed by his doctor have not helped very much (ropinirole). Depression has also been a result of this illness.

Did your doctor check your iron levels? Iron therapy is supposed to be the first line of treatment if your serum ferritin level is below 100. If you would like to discuss alternative meds to treat your RLS, just post a note and we can try to answer any questions that you have.

[Rustsmith]

Thursday, December 2

Welcome to

debasischak, who has suffered from RLS for the last 3 years and it has affected quality of life severely.

If you would like some suggestions to improve the control of your symptoms, just post a note to let us know what you are currently taking so that we will know where to start.

[Rustsmith]

Thursday, December 2

Welcome to

Mrspeaker, who struggles with bad legs and it impacts life so much. She is worried about augmentation too.

Although augmentation eventually hits most who use a dopamine agonist each day, there are ways to delay it. These include keeping your iron level up, keeping your dose as low as possible and accepting less than perfect control of your symptoms (say 90% control). If you have any questions, feel free to post a note and we will do what we can to answer them.

[Rustsmith]

Thursday, December 2

Welcome to

Latergator, who is a lifelong RLS sufferer. Later has been treated for many years and the symptoms are worsening with age and it drastically affects evening and night activities. Later hopes to gain something … anything at all helpful from other RLS-affected people.

We would love to try to help you out. If you are willing to tell us a bit about what you are doing to manage your symptoms and any questions that you have, we may be able to offer some suggestions for improving your situation.

[Rustsmith]

Thursday, December 2

Welcome to

respangler, who has questions from time to time he would like to pose and get feedback from others with RLS.

That is what we are here to do. Just post a note with your questions and we will do our best to answer them.

[Rustsmith]

Thursday, December 2

Welcome to

dirond, who was diagnosed ~20 yrs ago after 10+ years of increasing symptoms. She has daily use of ropinirole and C-dopa are helpful but evening onset is occurring earlier and very disruptive to early eve activities. She is looking for more info about entire range of treatment options.

If you are taking C-dopa every night, then there is an excellent chance that you are experiencing augmentation. If so, you need to switch from the dopamine agonists either to gabapentin, Horizant or Lyrica or to an opioid. If you are willing to tell us a bit more in a note, we may be able to be more specific about what you need to tell your doctor.

[Rustsmith]

Friday, December 3

Welcome to

Margaret Ranaud, who has had RLS all her life. She is 72 years old, now. She takes pramapexole 0.25 2-3 times a day at very specific times of the day. She sleeps in a different room than her husband because of the RLS. She gets the impression that her family doctor knows very little about this condition.

It wouldn't be unusual if your doctor isn't familiar with treating RLS, especially since you are taking 0.5 to 0.75mg/day of pramipexole since the max recommended dose is 0.25mg. Have you had blood tests to determine your iron (ferritin) levels and do you know the number? You could be in the early stages of augmentation, which means that you will need to get off of any dopamine agonist and switch to a different class of meds. If you would like our suggestions (including info to educate your doctor) or have any questions, just post a note and we will try to fill you in so that you regain control of your RLS and maybe will be able to move back in with your husband at night.

[Rustsmith]

Friday, December 3

Welcome to

scarson22, who has had RLS for coming up on 40 plus years. He says it's gotten progressively worse especially the past 20 years and in the last year it has become unbearable. He averages <3 hours of sleep a night and gets no deep sleep and when he does it's only for 5 or 10 minutes. It's dramatically impacting many aspects of his health and he is desperate to find a way to sleep well. He has a chronic back injury 2 disks missing and believes that may be amplifying the intensity of his RLS with age.

We would love to try to offer some suggestions to improve the management of your RLS. If you are willing to tell us what you are currently taking, that would give us an idea of where to start.

[Polar Bear]

Saturday 4th December 2021

Welcome today to

kingjane148 - who has had RLS for most of her life, She is 65 years old. And 2 of her brothers also have it. She is always looking for new ways to relieve it. Nothing works forever. It continues to keep her up sometimes all night. The RLS kicks in about 10:00 every night and she never knows how long it will last. It's absolutely miserable. She just tries to make the best of it.

We would love to be able to help you but you would need to make a post. You don't mention taking any medication. If you make a post and tell us how you have tried to manage your symptoms and if you have taken any medication including over the counter we will do all we can to help you gain some control.

[Rustsmith]

Sunday, December 5

Welcome to

Watercolor, who often lacks sleep. When she has bad nights, the leg movements, jumps, or twitches result in excruciating cramps, her leg muscles will be sore the next day. She needs to eat dinner at 4:00 in the afternoon, not too much protein, no alcohol, no snacking later. Legs need quiet in the evening, but not too quiet or they will start jumping or cramping before bed. She makes sure she walks or bikes during the day, or the RLS is worse at night. Taking other medications is tricky. And she has knee replacement surgery and a hysterectomy coming up this year and she is not sure how to manage the post-op.

A couple of questions to think about. First, have you had your iron levels checked and do you know your ferritin number? Second, are you taking anything to help manage your symptoms? With respect to your two pending surgeries, talk to your doctor about getting enough opioid pain killers both for the surgery and also to manage your RLS during recovery. And if you have any questions, just post a note and we will do what we can to answer them.

[Rustsmith]

Monday, December 6

Welcome to

Harold Johnson, who With aging has increasing discomfort during quiet evenings at home or when seeking satisfactory sleep, to the extent that he cannot sit to watch TV, read or use the computer comfortably. He has suffered with this disease for some 40 years and is now an RLS Support Group Leader, seeking to assist others cope with their discomfort or disabling experiences. He anticipates that the Discussion Board will benefit him both as an individual suffering with RLS as well as helping him be a more beneficial leader of the Support Group.

We would be happy to provide whatever support that you need. Just post a note with any questions or jump into any of our existing discussion topics and we will see what we can do.

[Rustsmith]

Monday, December 6

Welcome to

Khoulitwins, who has had RLS for over 40 years. It was managed pretty well until June 2021. It has been torture these last 6 months - trying new meds and living with horrible twitching. So Khoulitwins wants to join a community that understands this life.

We certainly understand what your life is like. If you have any questions or would like comments about your new meds, just post a note and we will try to help you out in any way possible.

[Rustsmith]

Tuesday, December 7

Welcome to

Greenleaf360, who has had RLS for 30 years and it has cost Greenleaf dearly.

RLS has cost all of us a lot over the years. If you have any questions, just post a note and let us know what we can do.

[Rustsmith]

Tuesday, December 7

Welcome to

Zig2zag, who needs help with a lifetime of RLS and with worse symptoms now than ever. Zig has many problems with medications and is now on Celexa.

We would be happy to provide some suggestions for medications that may help if you would be willing to post a note to tell us a bit about what hasn't worked. And FYI, anti-depressants like Celexa can help some people with insomnia but they can also be major triggers for RLS. It is important to continue taking it if your doctor prescribed it to address depression, but many doctors prescribe it for sleep issues and don't realize that it can create problems with RLS.

[Rustsmith]

Tuesday, December 7

Welcome to

middletj, whose wife has RLS pretty bad and they are trying to research treatment options.

You should be able to find the info that you are looking for in our files. But if you have any questions, feel free to ask so that we can fill in any blanks.