FEBRUARY 2022 - New Members

[Rustsmith]

Tuesday, February 1

Welcome to

LongtimeMember, who has had RLS for about 40 years and she is 76 years old. She has gone to support groups and have been an ongoing member of the RLS Foundation. She has taken different medications but finds that gabapentin works the best. She now also suffers from Peripheral Neuropathy, which is related to RLS.

If you have any questions, just post a note. Otherwise, feel free to join any of our existing discussion topics.

[Rustsmith]

Tuesday, February 1

Welcome to

Gail35, who has had RLS since high school and she is now in her 70’s. She has trouble finding anything that works, then she goes into augmentation and has to look for something else. She is getting frustrated.

We would love to offer you some suggestions for things that will work. All that you need to do is post a note that tells us what you have tried (other than the dopamine agonist that caused augmentation) so that we will know where to start with our suggestions.

[Rustsmith]

Tuesday, February 1

Welcome to

Mason1978, who has experienced RLS since she was 18 and it has gotten worse with age. This condition runs in the family and she is seeking help for it now. She just met with a neurologist and she prescribed gabapentin. She has done a lot reading on taking gabapentin and is not sure she wants to start taking it. She came here to connect and learn from other sufferers in hopes of reducing her RLS symptoms.

Gabapentin is actually the first level of treatment other than iron supplementation and is probably the most effective way to treat the insomnia that comes with RLS. Many of us take gabapentin (or Lyrica) combined with other RLS meds. If you have any questions, feel free to post a note and we will do our best to explain.

[Polar Bear]

Wednesday 2nd February 202

Welcome today to

alysher - who has been impacted in ways that leaves alysher unable to sit long to enjoy meals with loved ones, and unable to sit long in rides, and unable to walk long thus restricted and limited movements.

We really understand how your symptoms are affecting you and hope we will be able to help you. There is a lot of useful information to read here and plenty of advice. When you feel ready, please do post and tell us how you have tried to deal with your symptoms. Do you take any medication, prescribed or over the counter? Most of us find that medication is necessary but there are other ways to seek relief although they are usually not so successful.

[Rustsmith]

Wednesday, February 2

Welcome to

a1jonuk, who has lived with RLS probably for the majority of aljonuk life. a1jonuk had been a member previously some years back and is glad to be back.

If you have any questions that you would like to ask, just post a message. Otherwise, feel free to join in any of our conversations.

[Rustsmith]

Saturday, February 5

Welcome to

jacoblm, whose RLS leaves him walk the floors and night and is causing depression.

If you have any questions that you would like to ask, just post a note and we will do our best to answer them.

[Polar Bear]

Wednesday 9th February 2022

Welcome today to

Darlenesabo who is looking for a group of people that have maybe tried some alternate treatments for her RLS. It’s getting worse and greatly affects sleep and quality of life

There is a lot of information here and in particular if you take a look at the Non Prescription Forum you should find posts about alternative treatments. Many members have tried different methods.
Also if you make a post, start a thread we will try to help. Just give some details about your RLS, any medications that you have tried, any alternative methods you have already tried. This gives us a starting point.

[Rustsmith]

Wednesday, February 9

Welcome to

jbergman, whose RLS has continued to worsen with age. The medication that jbergman started with is no longer working. So, jbergman is hoping to be able to gather more information.

We may be able to help you out with an explanation of why your medication is no longer working. We just need for you to post a note that tells us what you have been taking, the dose and how long you have been on it. It sounds a lot like you may be augmenting on a dopamine agonist, but we need to hear more before we can confirm that and also tell you about the next step(s) for managing your RLS.

[badnights]

Welcome to ecuriak, who has had WED/RLS since childhood and is now struggling to manage symptoms after 20 years on medication.

Hi ecuriak
The type of medication we take has a profound effect on our symptoms. The dopamine agonists (pramipeoxle and ropinirole, brand names Mirapex and Requip) and the other dopamine-type medication called levo-carbidopa (brand Sinemet) all cause augmentation of the disease. Shockingly, most doctors are still ignorant of this problem, adn that ignorance causes much unnecessary suffering.

Welcome to the board, where you will find many sympathetic ears and hopefully some useful advice. If you'd like to make a post, you can tell the other members what medications you're on, what you've taken in the past, and any other aspects of your situation that are relevant.

[Polar Bear]

Friday 11th February 2022

Welcome today to

Zac 22 whose RLS has impacted sleep every night for at least 15 years. Plus the pure frustration and agony of not getting the right help! Doctors are so slow to learn about and incorporate the latest research and Zac22 desperately need to find a local doctor. Zac22 lives in a huge city, but it is still incredibly difficult.

We do understand and living in a large city is no guarantee of finding a suitable doctor, although it may help. Sleep difficulties are often what drives a sufferer to push for improved treatment. If you will make a post on a suitable thread, or start your own thread, we will do our best to help you. It would help us, to help you, if you tell us of any medications either prescribed or over the counter that you have tried and if any of them helped or did not help.

[Rustsmith]

Saturday, February 13

Welcome to

Ann S F, who finds RLS to be a difficult condition to live with. So, she would like to see how others handle it.

We would be glad to share that sort of information. All that you need to do is post a note to let us know what sort of things you need to know, is it medications, tricks to fall asleep or stay awake, advocating with doctors, etc.

[Polar Bear]

Sunday 13 February 2022

Welcome today to:

thurlbert10 who has suffered from this for a long time, thurlbert10 thinks the answer may have been overlooked. It isn't neurological, it's physical.

Sufferers will have various thoughts as to the cause of RLS. If you make a post and tell us of your RLS journey, what you have tried to alleviate your symptoms and how you have come to your feeling that it is physical and not neurological.

[Polar Bear]

Sunday 13 February 2022

Welcome today to:

Armadillo whose RLS has been controlling life! Armadillo has tried everything GOOGLE has offered and still only a couple hours relief! The doctor has prescribed Drug after Drug and recent one is Gabapentin, which gave some relief for about 2 weeks. Now there are spasms that keep Armadillo awake all night long. Armadillo has heard about Methadone, the pros and cons and is just about ready to try anything. The doctor is limited to only what Baylor Hospital will allow so Armadillo is looking for experienced answers.

What we have here is plenty of experience and we would love to try and help you. If you make a post in the Just Joined Forum telling us what drugs you have tried and what has or has not worked, this will give us a starting point to work from.

[Rustsmith]

Tuesday, February 15

Welcome to

danstone360, whose RLS has made a huge impact to his mental health as a result of sleepless nights caused by his RLS. It first started in his late 30s, almost 20 years ago. He has been able to control it through diet and would like to share his thoughts to help others.

We would love to hear about how your diet has managed your RLS symptoms. Just post a note to get the discussion started.

[Polar Bear]

17 February 2022

Welcome today to

PGRvickie who has severe RLS. Experienced augmentation with pramipexole recently, didn’t sleep or stop moving for five nights. Exhausted and hopeless. Husband is frantic to help

Most sufferers who take pramipexole will eventually experience augmentation and the only resolution is to get off it. This is not easy to do but is worth while. It's wonderful that you have the support of your husband. Please make a post telling us what treatments you have tried, what you are doing now, Exhausted and hopeless is something that we all, here on the Discussion Board, can understand. We really want to help you.