JUNE 2019 - New Members

[Rustsmith]

Tuesday, June 18

Welcome to

lion1973, whose RLS has prevented lion from getting quality sleep for years. Medicines prescribed for RLS affect lion's voice -- coughing and raspy voice so lion can't take them.

Please post a note telling us what meds that you have taken that cause issues with your voice. There are lots of choices, so if we know more, we may be able to suggest some more options to discuss with your doctor.

[Rustsmith]

Friday, June 21

Welcome to

Lola Girl, who is 37 years old and has had RLS since age 15 but didn't get diagnosed until a few years ago. She started medications and experienced augmentation and had to really fight her doctor to acknowledge that she was experiencing problems from the medication. She now travels from Wyoming to San Francisco every 6 months to receive treatment because she couldn't find doctors close enough that could effectively treat her augmentation. She just had her first baby and had a substantial decrease in her symptoms during pregnancy. She trying to find if anyone else out there has had the same experience.

If you will post a note asking your question, maybe you will find someone who shared your experience. On a different note, there are doctors at the Univ. of Colorado School of Medicine in Denver (really Aurora), that are very familiar with treating post augmentation RLS. That might be a bit closer to you than Stanford.

[Rustsmith]

Friday, June 21

Welcome to

madjean, who can't sit down starting early afternoon to relax or read a book. She can't sit through a movie or a play. She can't drive for more than 30 minutes at a time. She wakes up during the night even after taking medication. She has a gambling problem due to the medication.

Please post a note confirming for us that you are currently taking a dopamine agonist. If this is the case, you absolutely need to get off of it ASAP. We can help suggest how to best work with your doctor on this.

[Rustsmith]

Friday, June 21

Welcome to

LisaAnn27, whose RLS has put a stop to her normal life. She dreads waking up in the morning and especially going to sleep at night. She needs help and advice.

Please post a note telling us what you are doing to manage your RLS so that we can offer you some specific suggestions to consider.

[Rustsmith]

Friday, June 21

Welcome to

Doreen, who cannot travel by plane as her RLS makes it impossible.

Please post a note so that we can offer you some work arounds that make traveling by air possible.

[Rustsmith]

Saturday, June 22

Welcome to

Janetbo, who has a cold and is taking medications that increase her symptoms. Usually she can manage by avoiding medications, caffeine, etc. She wants to see if she can find help for managing when she has a respiratory infection.

The problem is the Bendryl that is in your over the counter cold meds. There are a number of alternatives that avoid Bendryl. Examples are Zyrtec and Claritin. If you will post a note with your question, there are other alternatives that you could use for your cold that will not trigger your RLS.

[Rustsmith]

Saturday, June 22

Welcome to

Sueguz53, who started having symptoms when she was a teenager. It came and went during younger years but became really bad about 5years ago.

Please post a note telling us what you are currently doing to manage your RLS so that we can offer you some suggestions for improvement.

[Rustsmith]

Sunday, June 23

Welcome to

Trisilex, who has severe RLS and it is disrupting life. Trisilex has found that Opioids are the only thing that works and NEEDS an alternative because Trisilex's doctor will not prescribe them.

The alternatives are iron therapy (oral and IV), dopamine agonists and glutamate/Horizant/Lyrica. If you have failed all of these, then opioids are the only current alternative. There are things that you can do to get them (most of us take them. If you will post a note, we can describe the various approaches that we have taken when doctors balk.

[Rustsmith]

Monday, June 24

Welcome to

Tystix, who has struggled with RLS for years. No matter the treatment, augmentation returns. Then frustration and depression make life a challenge.

Please post a note telling us about the meds that you have augmented on. There are treatments for those of us who have been through augmentation that are not susceptible to augmenting once again.

[Rustsmith]

Tuesday, June 25

Welcome to

LRenery, who is the fourth of a line of women in her family to have RLS; she has had it in her legs, arms and now shoulder blades (betw them) since she was 10. It had been occasional until she went on Requip and suffered TERRIBLE augmentation. Now she is using opioids to control.

Please post a note with any questions that you have or simply jump into any of our conversations. We would love to hear from you.

[Rustsmith]

Tuesday, June 25

Welcome to

kimberlywm, who has become disabled due to her RLS. She is a teacher and has not been able to work, drive or function on a daily basis. Along with the RLS, she has chronic insomnia at the same time. She has become a prisoner of her illness. On a side note, she has even woke up in the middle of surgery due to her RLS.

Insomnia is part of RLS, so you may only have one condition. Please post a note telling us what you are currently doing to manage your RLS and insomnia so that we can offer some suggestions to improve your life and give you your freedom back.

[Rustsmith]

Wednesday, June 26

Welcome to

jacy5, who can't stay still long enough to go to sleep. jacy has to walk then starts having leg cramps, then gets anxious and can't concentrate and the list just goes on. jacy has been taking Pramipexole and the doctors keep wanting to change to Requip, which does not help at all.

Have you had your iron levels checked and do you know your latest ferritin level? If pramipexole and Requip are causing problems, there are other alternatives, but we need to know more. So, please post a note telling us a bit more (such as you current dose and why you doctors what to switch) so that we can offer you some suggestions to discuss with your doctor.

[Rustsmith]

Thursday, June 27

Welcome to

M5austin, who wants to share information on RLS and monitor government policy.

Please post a note telling us a bit about what you do to manage your RLS and asking any questions that you have.

[badnights]

Welcome today to MichaelSGeneva, who has severe RLS/WED and PLM, and cannot work because of it.

So sorry you are in that situation. Feel free to browse around, and make yourself at home. You can reply to posts in existing Topics, or start your own Topic to tell others about yourself.

Are you on any medications? The dopamine-type medications are known to create a worsening of the disease known as augmentation. If this is what you're experiencing, it's dreadful - but fixable, to a large degree.

[Rustsmith]

Friday, June 28

Welcome to

cjg, whose husband has RLS and is struggling for relief. People with RLS seem to have a better understanding of the condition.

Unfortunately, you are correct that those of us with RLS often have a better understanding than most doctors. Please post a note telling us what your husband is currently doing to manage his RLS so that we can offer some suggestions for finding relief.