JULY 2020 - 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
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Posts: 6476
Joined: Sat Sep 28, 2013 9:31 pm
Location: Colorado Springs, Colorado

JULY 2020 - New Members

Post by Rustsmith »

Wednesday, July 1

Welcome to

David67, who recently went through cancer treatment and shortly after completion of the treatment he developed RLS. He is not certain there is a connection because he had experienced RLS in the past, however, it was very mild and short lived. Up until now he has been benefiting from his cancer pain medication. Soon, he will have to discontinue use of the medication since it's a narcotic and therefore not a permanent solution. He is now looking for alternative methods for relief. RLS is causing difficulty getting a restful night sleep and often crops up during the day whenever he lies down to try to catch up on sleep.

Many of us have to rely upon the use of opioids for the treatment of our RLS, but since you are in the early stages of RLS treatment there are still other options to explore. You should ask for a referral to a neurologist who has experience with treating RLS. This is usually a doctor who specializes in either movement or sleep disorders. To get an idea of the other treatment options, starting with checking your ferritin levels, take a look at this publication: https://www.sciencedirect.com/science/a ... via%3Dihub.

And feel free to post a note with any questions that you have. We would love to be able to help you out and to avoid many of the problems with physicians that many of us have experienced.
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 Peggyk

Post by Rustsmith »

Wednesday, July 1

Welcome to

Peggyk, who is looking for non-drug treatments that have helped other people with RLS. Her sleep the last few years has been greatly interrupted. She is interested in researching any alternatives other than meds. She used ropinerole for a while but it stopped working and made her sick.

Peggy, the first question is whether your doctor has checked your ferritin levels. For those of us with RLS, our ferritin needs to be at least 75. If your levels are very low, oral iron supplements (325mg of iron sulfate or 65mg iron equivalent of another product) may be all that you need. You can find out about other non-medication forms of treatment by looking through our forums on Physical Treatments and Non-Prescription Meds and Diets.

And if you have any questions, please feel free to post a note asking whatever you like. We are here to try to 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 mbwhite

Post by Rustsmith »

Wednesday, July 1

Welcome to

mbwhite, who has had RLS for over 10 years, has treated it using prescribed drugs and so is interested in finding alternatives to this as mbwhite is concerned about the long term impact the medication will have.

You can take a look at our forums on Physical Treatments and Non-Prescription meds to get an idea of what things work and what does not. Unforuntately, most of us have had to accept that we will be taking prescription meds for the rest of our lives. The only ones that are known to cause problems with continued use are the dopamine agonists (Mirapex, Requip and Neupro). These work great for a while, but will eventually make your RLS worse, so treatments based upon iron therapy or the alpha-2-delta ligands (Gabapentin, Horizant and Lyrica) are preferred for those who are just starting 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 KTH

Post by Rustsmith »

Wednesday, July 1

Welcome to

KTH, who has had RLS for 35 years and affected all areas of life and has been worse the last 10 years.

We would love to be able to offer you some suggestions to improve the control of your RLS and your quality of life if you would post a note telling us a bit about what you are currently doing to get by.
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 Rlynn4

Post by Rustsmith »

Thursday, July 2

Welcome to

Rlynn4, who has had achy legs since early childhood. He never knew what it was until his doctor put a name on it (restless legs syndrome) many years ago. His legs ache horribly at times of rest, so he seldom rests. When he does try to rest, the legs ache so badly that he moans and complains and becomes quite pathetic even to himself. He has slept deprivation and seldom is able to sleep with his wife because of his leg movement.

If you would be willing to post a note telling us what you are doing to manage your symptoms, we should be able to offer some suggestions in improve the control of your achy legs as well as 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.

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

Welcome to lrogers13

Post by Rustsmith »

Thursday, July 2

Welcome to

lrogers13, who was diagnosed with RLS over 30 years ago, in her late teens. For the past 10 years her symptoms are severe, occur 24/7, and affect her legs, my arms, and spine. She has consulted with numerous neurologists and none accept that augmentation is a problem and have continued to increase her dosages to the point that she is now at the maximum daily dose. The side effects of the medications have negatively impacted her health in other ways, and yet the symptoms are still so poorly controlled that she cannot sit down for more than a few minutes. This greatly impacts her job, her ability to drive or to even ride in a car or plane, to have dinner with friends, to watch a movie or TV, etc. She is like a shark...constantly in motion.

Most of us have been through augmentation and also doctors who do not know how to properly treat RLS. At this point, you really need to see a physician who is knowledgeable in both RLS and augmentation. The RLS Foundation's Quality Care Clinics are a great place to start with this - if one is relatively close to you. Many of us also have to travel to see one of these experts, which is worth the effort. If you will post a note to give us an idea of where you live, we may be able to offer other suggestions for finding a doctor who understands.
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 gmigely

Post by Rustsmith »

Friday, July 3

Welcome to

gmigely, whose RLS has affected life for longer than can be imagined. 30 years ago migely would find it difficult to relax in the evening with her spouse. Also, she would either not be able to fall asleep or would wake up from sleep jumping around in the bed. It was after a sleep study 5 years ago that she learned she had RLS along with central sleep apnea. Now, pramipexole and gabapentin help to control her RLS to some degree.

We would love to answer any questions that you have or make some suggestions that could help improve the control of your RLS if you would be willing to post a note with any questions or clues about the dose of pramipexole and gabapentin that you are currently taking.
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.

ViewsAskew
Moderator
Posts: 16570
Joined: Thu Oct 28, 2004 6:37 am
Location: Los Angeles

Welcome, Zeke

Post by ViewsAskew »

Sunday - 5th of July - welcome, Zeke.

Zeke has insomnia, RLS, and PLMD, and recently was diagnosed with peripheral neuropathy and obstructive sleep apnea. Zeke's neurologist He recommended RLS Foundation and is quoted in some of the books he's reading about RLS/PLMD.

Sounds like you are in good hands, Zeke! Any doc who suggests the Foundation is likely up to date on current treatments. And, sounds like you need that right now.

Let us know if you have any questions. Participate is much or as little as you like - we're always here to help.
Ann - Take what you need, leave the rest

Managing Your RLS

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.

ViewsAskew
Moderator
Posts: 16570
Joined: Thu Oct 28, 2004 6:37 am
Location: Los Angeles

Hi, SpoffardTex

Post by ViewsAskew »

Sunday, 5th of July - we welcome SpoffardTex.

Spoffard joins us with 4 decades of RLS and all the things that go with that - trial and error of meds, anxiety, and the impact on health, marriage, career, etc.

I hear you. I really do. My guess is that most of us will recognize ourselves in that statement. Which makes me terrifically sad. Please let us know if you have specific questions. Poke around, read posts (new and old), add to any post, or start a new post.
Ann - Take what you need, leave the rest

Managing Your RLS

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 Woodyboy0

Post by Rustsmith »

Tuesday, July 7

Welcome to

Woodyboy0, who has RLS with night terrors and sleep apnea. He wishes to know more and discuss with others.

We can definitely help you out with learning more about RLS and discussing your situation with others. You can get started on that by posting a note telling us a bit about what you are currently doing to manage your RLS as well as any other meds that might be contributing to the nightmares.
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 Pancake_muncher

Post by Rustsmith »

Wednesday, July 8

Welcome to

Pancake_muncher, who has mild RLS so far but wants to see how other people manage theirs.

Most of the active members of the board have severe or very severe RLS, but we remember what it was like when it was mild. If you post a message with any questions that you have, we would be happy to help you understand what we do to try to manage our RLS.
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 Vancgirl

Post by Rustsmith »

Wednesday, July 8

Welcome to

Vancgirl, who has been living with RLS since she was a teenager, although it only really started to bother her in her 30's. Now in she is in the 60's, she is managing so far with gabapentin and leg rubs with A535. Hopefully this will continue to be enough. She has been a Foundation member for many years but never bothered with the discussion board, so she thought she would check it out.

Glad that you finally decided to take a look at the board. When you are ready, feel free to post a note with any questions that you have or simply join one of our discussions.
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 JLT06

Post by Rustsmith »

Wednesday, July 8

Welcome to

JLT06, who is hoping to gain more knowledge and find new ideas to treat RLS. JLT is currently decreasing medication due to augmentation and having a lot of difficulty with this, and is hesitant to try medication for this now. The problem mainly is no sleeping, very bad withdrawal symptoms, and is therefore looking for alternative treatments.

Withdrawing from dopamine agonists is difficult, at best and as you know, involves a lot of suffering. If you will post a message telling us about your past med (including the dose) and what your dose is today, we can offer a you some comments (and a lot of commiseration) about tapering and then stopping your meds. We can also try to give you an idea of what life is like on the other side of augmentation.
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 Lynda

Post by Rustsmith »

Friday, July 10

Welcome to

Lynda, who hashad RLS for 40 years. She commenced medication last year but think she may have augmentation. She finds that she can’t concentrate on anything in the evening.

The keys to augmentation are that your RLS seems to be getting worse, that it occurs earlier in the evening than it did and that it may move to other parts of the body, like the arms. Take a look at our forum on Augmentation and feel free to post a note with any questions that you have.
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 BAB97TIE

Post by Rustsmith »

Friday, July 10

Welcome to

BAB97TIE, who has not been able to sleep for more than 5 months, resulting in total exhaustion, low immunity and several illnesses.

Please post a note telling us what you are taking to try to manage your RLS and insomnia. We can probably help, but need to know more before we can offer you some specific suggestions.
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.

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