AUGUST 2021 - New Members

[Rustsmith]

Saturday, August 14

Welcome to

Matiss, who has had idiopathic neuropathy in the toes/feet in the sock and glove pattern for over 5 years. When Matiss started getting burning pain in the feet and other discomfort, based on the description of when and how the pain appears, Matiss's neurologist diagnosed RLS and prescribed Gabapentin. Over a span of a few months, Matiss has needed increasingly larger doses of Gabapentin to control pain and allow sleep.

Burning pain is not one of the symptoms of RLS. The key symptoms are an urge-to-move that occurs in the evening and at bedtime and most important, the urge-to-move is relieved by moving that limb(s) such as by walking around the room, but the urge returns as soon as you stop.

We very often find that doctors are not familiar with the diagnosis and treatment of RLS. If you have any questions or would like to discuss your situation, feel free to post a note.

[Rustsmith]

Sunday, August 15

Welcome to

Mou7gh, who feels hopeless, that's it's going to get worse, and if it gets severe, and mou7gh has no effective treatments,

There are always other treatments to try. Many of us have severe or very severe RLS and we have all found treatments (or combinations of treatments) that we can use to manage our RLS. If you would be willing to list the things that you have tried, we can offer you some suggestions that should provide you with some relief.

[Rustsmith]

Sunday, August 15

Welcome to

Joaniebo, who has suffered from RLS since 2008. Over 20+ years of poor sleep has taken its toll on her.

We would love to be able to help you improve your sleep, all you need to do is post a note with any questions that you have.

[Rustsmith]

Monday, August 16

Welcome to

bonesbikes, who cannot get any good sleep at night as RLS keeps bones up all night to keep moving. This means no quality time since so bones is tired all day and has no energy.

We would love to be able to provide some suggestions for getting more sleep. If you can tell us what you are currently doing to manage your RLS, that should allow us to provide you with some suggestions.

[Rustsmith]

Monday, August 16

Welcome to

Naomi392, who started having jittery legs at the same time she was taking a new blood pressure medication (Hydrochlorathiazide), approximately two years ago. It happened quickly but she has had it every night/day since. She has done lots of night walking, is now taking Ropinirole, and sleeping nights, but is still getting daytime RLS. She is 81 and cannot rest or relax in the afternoon or evenings now until around 7 pm or later at which time she is dozing on and off until bedtime. It is tormenting.

If you have any questions about RLS or how to improve the control of your symptoms, just post a note and tell us how we can help.

[Rustsmith]

Tuesday, August 17

Welcome to

JackieL, who is awake 2-3 hours every night due to RLS. She wants to sleep through the night.

Sleep issues are usually the first complaint that takes us to the doctor for RLS. We may be able to offer some suggestions that would help you sleep, but we need to hear a bit from you about what you are currently doing to manage your RLS so that we can know where to start.

[Rustsmith]

Tuesday, August 17

Welcome to

Jgp1219, whose RLS is reasonably controlled with current medication regimen, but Jgp is concerned about augmentation over time. Therefore, Jgp is interested in non-medical strategies for managing symptoms before and after bedtime.

You can find info on non-medication approaches to RLS in our Physical Treatments and Non-prescription medications forums. Most of what you will find will be the things that do not work, but there are a few approaches that can help (except when getting off of dopamine meds following augmentation). If you have any questions, feel free to ask.

[Rustsmith]

Wednesday, August 18

Welcome to

mamatrice, who has had RLS since she was a pre-teen. For the last 50+ years it has progressed into a daily occurrence and without medication she is unable to cope with life. It has affected her sleeping, her dealing with life, her jobs, her family and anything else in-between. Most of the doctors she sees don't understand it and she doesn't feel she has been treated properly. Right now she is, once again dealing with getting refills for her pramipexole. An ongoing problem. She has only 2 days left and no refills.

We would love to be able to offer you some suggestions to improve the control of your RLS. If you have been on meds for 50+ years and are currently using pramipexole, there is a good chance that you need to be switched to a different type of medication. This also might be an indication that your doctor doesn't understand the proper treatments for RLS. We can probably offer you a number of suggestions, such as the type of meds that your doctor should be prescribing, documents that you can share with your doctor for his/her education (if you think it would be accepted and read) or ways to find a doctor who "gets it" when it comes to helping a patient with RLS.

[Rustsmith]

Friday, August 20

Welcome to

marilynfer, whose first symptoms started in 1986 and in 1999 she sought treatment. Her condition worsened to the point where she takes 2mg Ropinorole XL twice a day, causing morning and supper. She recently started using medical marijuana to reduce the ropinorole by 75%. (so far)

It is great that you have been able to reduce your ropinerole dose that much with the marijuana, but it is going to start getting more difficult from here. If you have any questions, just post a note and ask.

[Rustsmith]

Sunday, August 22

Welcome to

pedros, who has suffered with RLS now for ten years and walks the floor almost every night. It just will not let him sleep, so he is fast losing the will to live.

There are ways to manage your symptoms so that you are able to sleep. If you are willing to tell us what you are currently doing to manage your symptoms, we should be able to offer some suggestions to discuss with your doctor.

[Rustsmith]

Monday, August 23

Welcome to

tkrajack, who started having RLS at nighttime during pregnancy in her 30's. It went away after giving birth but started up again about 5 years ago, when she was in her late 40's. She has been managing fairly well with Highland's Restful Legs but some nights are starting to get worse, and she would like to find some holistic ways to improve her symptoms.

One thing that you should do is to ask your doctor to check your iron levels, including ferritin. It is possible that you could find relief by simply taking an iron supplement. You should also take a look through our Physical Treatments and Non-Prescription meds forums to find things such as soaking in a very hot or very cold bath.

[Rustsmith]

Friday, August 27

Welcome to

clmckay, who has RLS and is interested in possible remedies.

There are a number of RLS treatments that work and an even larger number of medications that makes it worse. If you don't find the information that you are looking for, just post a note to tell us what you have tried so that we will know where to start. In the meantime, you might want to look at the paper listed in this posting viewtopic.php?p=105695#p105695

[Rustsmith]

Friday, August 27

Welcome to

jrsygrl2310, who is having hypnic jerks which are now turning into RLS. She is currently taking doxycycline which she has read can cause RLS. She would like to know if others have had any experience with this.

Doxy is not a medication that I have seen listed for RLS, but you are more than welcome to post a note so that others can comment.

[Rustsmith]

Saturday, August 28

Welcome to

Fishbizak, who was diagnosed in 2009 and has been prescribed dopamine agonists that have caused severe augmentation. Fishbizak is at the point now that where only getting a few hours of sleep at night is possible. Fishbizak wants to come off of all of the dopamine agonists and try methadone.

The trick to making the switch is often finding a doctor who knows how to treat augmentation and is willing to prescribe opioids for RLS. If you need advice on how to find such a doctor, just let us know. If you think that your doctor just needs a bit of education or a slight push, then you can share this journal article that was written for just this sort of situation https://www.mayoclinicproceedings.org/a ... X/fulltext

[Rustsmith]

Sunday, August 29

Welcome to

EVogel, who wants to learn about RLS, which is debilitating and humbling. EVogel cannot do what used to be possible before and Cannot sleep!

Lack of or poor quality sleep is usually the first thing that drives us to seek help from a doctor. Are you doing anything to manage your RLS? If you would like suggestions for getting your RLS under control, just post a note so that we can offer you our suggestions.