MARCH 2021 - New Members

Whether new to RLS or new to the site, we welcome you and invite you to share your history and experiences with RLS/WED, introduce yourself, and ask questions. Successful treatment starts with a solid understanding of this disease.
Rustsmith
Moderator
Posts: 6476
Joined: Sat Sep 28, 2013 9:31 pm
Location: Colorado Springs, Colorado

Welcome to beccaapril

Post by Rustsmith »

Wednesday, March 10

Welcome to

beccaapril, who after experiencing a resurgence of RLS symptoms, conducted research on the board. It would appear that she is going through augmentation. She is looking for support and suggestions as to how to treat it and how to talk to a physician.

Talking to a physician can be challenging, especially if the doctor isn't versed in treating augmentation. Many doctors are not trained in treating RLS and are not aware of augmenation, which is an RLS specific side effect of extended use of dopamine agonists. We can help by providing suggestions on how to proceed, but need to know whether you think that your doctor would be receptive to your suggestions. If not, then we can suggest ways to find a doctor who can help. One question to think of when considering your current doctor is whether (s)he would be willing to prescribe opioids since this can be the easiest way to get through dopamine agonist withdrawal. We look forward to seeing your post.
Steve

https://www.mayoclinicproceedings.org/a ... 0/fulltext
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

Rustsmith
Moderator
Posts: 6476
Joined: Sat Sep 28, 2013 9:31 pm
Location: Colorado Springs, Colorado

Welcome to smb

Post by Rustsmith »

Thursday, March 11

Welcome to

smb, whose RLS causes scary awakenings at night shortly after falling asleep. smb cannot lay still and has to pace or walk until it passes. Seems to be getting worse lately.

Are you currently being treated for RLS? If so and you don't mind sharing, what are you taking? We may be able to provide some suggestions to improve your sleep. All you need to do is post a note and tell us a bit more.
Steve

https://www.mayoclinicproceedings.org/a ... 0/fulltext
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

Rustsmith
Moderator
Posts: 6476
Joined: Sat Sep 28, 2013 9:31 pm
Location: Colorado Springs, Colorado

Welcome to ndarbydog

Post by Rustsmith »

Thursday, March 11

Welcome to

ndarbydog, who struggles with the anxiety and sleeplessness that come with RLS and so is looking to connect with others dealing with these issues.

Many of us struggle with those same issues. If you will post a note with any questions you have or you can simply join an existing discussion, we would be happy to share.
Steve

https://www.mayoclinicproceedings.org/a ... 0/fulltext
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

Rustsmith
Moderator
Posts: 6476
Joined: Sat Sep 28, 2013 9:31 pm
Location: Colorado Springs, Colorado

Welcome to BADGOODGUY

Post by Rustsmith »

Friday, Marc 12

Welcome to

BADGOODGUY, who needs RLS help as it is driving him nuts.

We would be happy to help you out. If you feel that you can tell us what you are doing to manage your RLS, we should be able to suggest ways to improve your control of your symptoms.
Steve

https://www.mayoclinicproceedings.org/a ... 0/fulltext
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

Rustsmith
Moderator
Posts: 6476
Joined: Sat Sep 28, 2013 9:31 pm
Location: Colorado Springs, Colorado

Welcome to Romans109

Post by Rustsmith »

Friday, March 12

Welcome to

Romans109, who has suffered from RLS for about 30 years and has resisted medication due to the side effects. Romans's symptoms continue to worsen and hopesg to learn from others what has helped them.

Most of us are on one form of medication or another but you will find some things in our non-prescription and our physical treatments forums. If you have any specific questions, please feel free to post a note.
Steve

https://www.mayoclinicproceedings.org/a ... 0/fulltext
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

Rustsmith
Moderator
Posts: 6476
Joined: Sat Sep 28, 2013 9:31 pm
Location: Colorado Springs, Colorado

Welcome to jacwillheal

Post by Rustsmith »

Friday, March 12

Welcome to

jacwillheal, who wants to learn from this community how she can help herself with her RLS and to share her experiences in hopes they will help others.

All that you need to do to start sharing your experiences is to post a note to start a conversation.
Steve

https://www.mayoclinicproceedings.org/a ... 0/fulltext
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

Rustsmith
Moderator
Posts: 6476
Joined: Sat Sep 28, 2013 9:31 pm
Location: Colorado Springs, Colorado

Welcome to Affrim

Post by Rustsmith »

Friday, March 12

Welcome to

Affrim, who try not to think about RLS, but with so much trouble sleeping it is challenging. Affrim is semi-retired, so taking little short naps, that does help.

If there is anything that we can do to help you with your RLS and insomnia, just let us know by posting a note.
Steve

https://www.mayoclinicproceedings.org/a ... 0/fulltext
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

Rustsmith
Moderator
Posts: 6476
Joined: Sat Sep 28, 2013 9:31 pm
Location: Colorado Springs, Colorado

Welcome to Erialicia

Post by Rustsmith »

Saturday, March 13

Welcome to

Erialicia, who has RLS and needs help. She also needs resources and ideas on what to do.

We can provide lots of ideas for things to do but we need to have an idea of where you currently stand. If you will post a note telling us about what you are currently doing, we can provide the rest.
Steve

https://www.mayoclinicproceedings.org/a ... 0/fulltext
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

Rustsmith
Moderator
Posts: 6476
Joined: Sat Sep 28, 2013 9:31 pm
Location: Colorado Springs, Colorado

Welcome to Rfranklin38

Post by Rustsmith »

Saturday, March 13

Welcome to

Rfranklin38, who I had no life until Rfranklin go the correct meds.

That is how many of us feel. If you have any questions, just post a note so that we can try to provide an answer.
Steve

https://www.mayoclinicproceedings.org/a ... 0/fulltext
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

Rustsmith
Moderator
Posts: 6476
Joined: Sat Sep 28, 2013 9:31 pm
Location: Colorado Springs, Colorado

Welcome to Fishfood

Post by Rustsmith »

Sunday, March 14

Welcome to

Fishfood, for whom 3 months after a third (and successfu!)l spinal surgery started having foot pain when lying down. Hot and cold feeling. As well as an aura around the legs. Now it is just pain. No leg movements. It cycles so every 3 or 4 nights it's too painful to sleep. And some days it's painful too. Naps are a problem. This is no fun.

Have your been diagnosed with RLS? Are you receiving any sort of treatment for RLS? Please post a note to let us know more.
Steve

https://www.mayoclinicproceedings.org/a ... 0/fulltext
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

Rustsmith
Moderator
Posts: 6476
Joined: Sat Sep 28, 2013 9:31 pm
Location: Colorado Springs, Colorado

Welcome to Rhelda

Post by Rustsmith »

Monday, March 15

Welcome to

Rhelda, whose RLS causes her not to sleep at night. She is constantly tired, but is unable to sleep. She dreads bed time as she is mostly awake. She hates the jerking, and constantly having to move.

Those are all common complaints here on the discussion board. What are you doing to manage your RLS? Has your doctor performed blood work to check your ferritin levels? If you are willing to tell us a bit more, we may be able to make some suggestions that would improve your sleep.
Steve

https://www.mayoclinicproceedings.org/a ... 0/fulltext
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

badnights
Moderator
Posts: 6259
Joined: Tue Mar 10, 2009 4:20 pm
Location: Northwest Territories, Canada

Welcome to juliums

Post by badnights »

Monday March 15: Welcome to juliums who has had WED/RLS for 30 years, with increasing dosage over the past few years. Now juliums is faced with stopping the ropinirole due to augmentation, and is getting 1 to 2 hours of sleep and can't function.

juliums, so sad to hear this is happening to you. Feel free to post comments in existing topics and to create your own Topic to tell members more about your situation. We can help direct you to resources on augmentation, on the importance of iron in treating WED/RLS (see the link in my signature block), and methods of coping. Also many members can speak about what it is like to come off a dopaminergic medication like Requip, either cold turkey or by weaning.
Beth - Wishing you a restful sleep tonight
Click for info on WED/RLS AUGMENTATION & IRON
I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.

Rustsmith
Moderator
Posts: 6476
Joined: Sat Sep 28, 2013 9:31 pm
Location: Colorado Springs, Colorado

Welcome to daryl1139

Post by Rustsmith »

Tuesday, March 16

Welcome to

daryll1139, who finds it very difficult to deal with his restless legs.

If you are willing to tell us what you are currently doing to deal with your RLS, we can probably suggest some things that would help you out.
Steve

https://www.mayoclinicproceedings.org/a ... 0/fulltext
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

Rustsmith
Moderator
Posts: 6476
Joined: Sat Sep 28, 2013 9:31 pm
Location: Colorado Springs, Colorado

Welcome to cwbuis

Post by Rustsmith »

Wednesday, March 17

Welcome to

cwbuis, who has had RLS since the mid 1990s. As cwbuis has gotten older it has gotten worse with so many sleepless nights. cwbuis has tried numerous pills, some OTC others prescription.

We can probably offer you some suggestions that would help with your sleep and control of your RLS. All you need to do is post a note and tell us some of hasn't worked so that we know what not to suggest.
Steve

https://www.mayoclinicproceedings.org/a ... 0/fulltext
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

badnights
Moderator
Posts: 6259
Joined: Tue Mar 10, 2009 4:20 pm
Location: Northwest Territories, Canada

welcome to Dharward67

Post by badnights »

Today, Dharward67 joins us. Dharward67 has taken Requip 2 mg at bedtime for years, but symptoms are gradually worsening such that they occur during daytime too - sitting through meetings, car rides, movies, etc, and quality of life is decreasing. Dharward67 is looking for help.

Dharward67: you are probably experiencing augmentation. It is something that happens to most people with WED/RLS when they are given dopaminergic medications like Requip. It is a worsening of the disease caused by the medication that is supposed to help it. It's more likely to happen, and more severe, in people with serum ferritin less than 75. The only answer is to get off the Requip. After a withdrawal period of the worst symptoms you've ever had, your symptoms will lessen back to baseline - which may be how they were when you started Requip, or a bit worse, but they'll definitely be better than they are now. A potent opioid can tame the symptoms enuf to let you get some sleep during the withdrawal, but not all doctors realize this or fully understand the difficulties you will go thru without the opioid.

You will probably need an alternative medication after the withdrawal. Most people end up using a combination of an opioid and an anti-convulsant, or, very carefully, an opioid and a very low dose of a dopaminergic medication, and also take oral or intravenous iron to keep their ferritin up.

You can learn a lot by reading here. One of the best ways to get help is to start a new Topic and tell us more about your situation. If you have any questions, please ask.
Beth - Wishing you a restful sleep tonight
Click for info on WED/RLS AUGMENTATION & IRON
I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.

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