SEPTEMBER 2022 - New Members

[Rustsmith]

Tuesday, September 13

Welcome to

lindseycombes, who has been suffering from leg pain at night for sometime and recently it seems to be getting worse. She is having problems getting to sleep at night, which is starting to get her really frustrated.

Are you doing anything for your symptoms so that your doctor could change the dose or otherwise modify the treatment? If you would like to get some suggestions about what to discuss with your doctor, all you need to do is post a message and give us an idea of what your current treatment involves.

[Rustsmith]

Tuesday, September 13

Welcome to

LauraJ, who gets an uncontrollable urge to deep massage calves at night when resting. She doesn’t even know if this is RLS … but is trying to find remedies for it. It usually does not interfere with sleep.

Here is a link to the official diagnostic criteria for RLS. You must respond Yes to all five questions for it to be RLS. If it is, many of us find that soaking our legs in a tub of very hot (or very cold) water helps shut the sensations down for a while.

http://irlssg.org/diagnostic-criteria

[Rustsmith]

Thursday, September 15

Welcome to

daiblum, who ha RLS and wants to share what works for him for others to help them out.

All that you need to do is post a note in the appropriate forum to tell us about that you are doing to control your symptoms.

[Rustsmith]

Saturday, September 17

Welcome to

Kost, who has always had manageable RLS until about 1.5 years ago. Since then it has been very severe. No sleep, restless to her core, she recently augmented on DA’s. Feeling really hopeless at this point.

There are treatments for those of us with refractory RLS (post augmentation). The problem is that these treatments usually involve low dose opioids and most doctors act as if they don't exist. You need to find a doctor with experience treating augmentation and who is willing to prescribe opioids. Unfortunately, that search can be long and arduous.

[Rustsmith]

Saturday, September 17

Welcome to

helenxxx, who has very restless legs which means she cannot stay still for long and get comfy.

Many of us with severe to very severe RLS have found treatments that provide a reasonable level of control over our legs. If you would like some suggestions, just post a note to tell us what you are currently doing to manage your symptoms so that we will know where to start with our suggestions.

[Polar Bear]

18th September 2022

Welcome today to

Neecy44 who considers RLS to be the root of all most all of his/her health issues, including significant depression and anxiety. Neecy44 lives in fear of augmentation and a lack of more options, and wouldn't wish RLS on a worst enemy. Neecy44's RLS is severe and has had it since 2005. Neecy44 is 67 yrs old.

Please do post and tell us about your RLS and how you have been managing your symptoms. Include all medications that have or have not worked and tell us if you have had your ferritin serum checked.
We hope we can reassure you regarding further options.

[Polar Bear]

21 September 2022

Welcome today to

lice in slices who has had RLS for a couple of decades and would welcome the opportunity to discuss with others. It affects sleep and airline travel so 'life in slices' would love to hear how people have been coping with it and what treatments they have sought out.

Please do make a post and tell us how you have been managing so far, your medications that have or have not worked.
What treatments your doctor may have done, i.e. your ferritin serum level. Once you do this we are able to consider what may be a way forward for you.

[Rustsmith]

Saturday, September 24

Welcome to

Cindyswimlee, whodr RLS has at times taken away her quality of life. She has become isolated at times because going out creates terrible uncomfortability.

One of the worst things that RLS does to us is reduce our Quality of Life by causing us to be isolated from our friends and family. Are you currently doing anything to manage your symptoms? Do you have any questions you would like to ask? Just post a note and let us know how we can help.

[Rustsmith]

Saturday, September 24

Welcome to

Julliefoemmel, whose RLS is ruining her life. She can’t sleep now and driving long way bothers her.

Driving long distance is a problem for almost all of us, although traveling as the passenger can be even worse. What are you doing to manage your symptoms? Is there advice on anything that we can offer that would make life better?

[Rustsmith]

Monday, September 26

Welcome to

SuzanneMB, who is seeking info on severe withdrawal symptoms from mirapex.

There are two methods used to go through Mirapex withdrawal. The first is to simply gut through the worst of it. The initial severe symptoms of withdrawal last for about a week and then gradually subside over the next three weeks. Most return to their untreated baseline after about a month. The second approach is to use a few days of opioids to get through the severe first week. Although this approach is difficult for some doctors to accept, they sometimes will come around when asked what they plan to use to treat your RLS after you have gone through withdrawal. If your RLS was severe prior to starting Mirapex, it will still be severe and could require opioids now that dopamine agonists are no longer an option for you.

[Polar Bear]

27 September 2022

Welcome today to

Jellybean who finds things quite challenging. Lack of sleep. Jellybean feels misunderstood.

RLS is indeed challenging and a lack of sleep is something we all deal with. Please make a post giving us the background of how you have been managing your RLS. Tell us what medications have or have not helped, the dosages etc. We can then try to help you go forward.
As for feeling misunderstood, we definitely understand the anguish of living with RLS ...... we understand and we want to help you.

[Rustsmith]

Tuesday, September 27

Welcome to

Jellybean, whose RLS has made things quite challenging through lack of sleep. Jellybean feels misunderstood.

Most of us feel that only someone else with RLS can understand what our lives are like. If you have any questions to ask or would like some suggestions to discuss with your doctor, just post a note so that we can try to help you out.

[Rustsmith]

Thursday, September 29

Welcome to

Octoberbabee, who has discomfort and pain that have increased in the past year. The pain used to come infrequently but now it seems to be appearing 3-4 times a week. The pain in her lower leg is excruciating at times.

Intense pain is not one of the common characteristics of RLS, so you may have something else as well. If you would like, post a note with any questions that you have and we will do what we can to answer them.

[Rustsmith]

Friday, September 30

Welcome to

Eyeteach, who is looking for answers and peaceful sleep.

Hopefully we have the answers to whatever RLS questions you have. All that you need to do is post a note and let us know what we can do to help.