APRIL 2020 - New Members

[Rustsmith]

Wednesday, April 1

Welcome to

Lf8188, who has suffered with RLS most of Lf's life and in now in the mid 50's and it seems to be getting worse. Lf is experiencing RLS in hands as well as legs and feet. It is a bother all day instead of just in the evening/night like it used to. Lf is hoping to learn new information from others who suffer also and to help with symptoms and management of this disease.

Please post a note telling us about your medication, including dose. From our description, It is possible that you are experiencing augmentation and need to change meds.

[Rustsmith]

Friday, April 3

Welcome to

TheDoDahMan, who about 3 years ago began to have problems sleeping through the night. It quickly progressed to the point that he was lucky to get more than 2-4 hours of oft-interrupted sleep per night. This caused depression and wreaked havoc with his schedule. His PCP prescribed Das to no avail. He tried dozens of non-pharmaceutical remedies, from weighted blankets to "earth-grounded" sheets, and non-prescription creams and pills. Eventually he found an out-of-state specialist who was willing to prescribe low-dose methadone and his life immediately changed from hellish back to near-normal.

Many of us depend upon low dose opioids for a near normal life. Please post a note telling us about your dose and asking any questions that you have.

[Rustsmith]

Monday, April 6

Welcome to

Aggie9092, whose RLS causes a lack of sleep and causes him to wake his wife.

Please post a note telling us what you are doing to manage your symptoms and asking any questions that you have.

[Rustsmith]

Tuesday, April 7

Welcome to

johneglass, who has had RLS for over a decade and is looking for solutions.

Please post a note telling us about the things that you have tried so that we will know where to start with suggestions to improve the control of your symptoms.

[Rustsmith]

Wednesday, April 8

Welcome to

TomR, whose RLS, if that is what he really has, has prevented him from getting proper sleep for many years. It has made him markedly less productive, tired, and depressed even though he is a remarkably optimistic person.

Tom, to get an idea of whether you actually have RLS, take a look at this website. http://irlssg.org/diagnostic-criteria

In addition to RLS, there is also its cousin, PLMS (Periodic Limb Movement Syndrome), which only occurs while you are asleep whereas RLS only occurs while you are awake. The treatments are pretty much the same for both and 85% of us with RLS also have PLMS.

If you still think that you have RLS, have a talk with your doctor. There are ways to treat RLS and you owe it to yourself to find out and then get treated if you have it. If your doctor has an understanding of RLS (many do not), the first step will be to have some blood work done to determine your iron levels. If you are low by RLS standards, then there is a chance that you will improve by simply taking an iron supplement. But wait for your doctor to tell you that since too much iron can be harmful to some.

[Rustsmith]

Wednesday, April 8

Welcome to

69roadrunner, who has had RLS for about 30 years. He can only sleep maybe a few hours a night. Daytime and Night has gotten worse over the years, until about 2 months ago. He started used CBD oil and has rare bouts during the day and nearly none at night sleeping...

Happy to hear that CBD is working so well for you. Many of us do not benefit from CBD, but do get help from THC.
Please post a note with the specifics of your CBD, including the dose, so that others could possibly benefit like your did.

[Rustsmith]

Thursday, April 9

Welcome to

kyess, who has not been able to sleep every night until 4:00 a.m. kyess has constant pain / strange leg sensations at night through the morning hours and is tired all the time.

Please post a note telling us what you are doing to manage your symptoms so that we will know where to start with your suggestions for getting more sleep

[Rustsmith]

Thursday, April 10

Welcome to

Azmtnman, who has had RLS for 40 years and would like to see how others are handling or coping.

If you will post a note telling us what you do to manage your RLS, we would be happy to share what we are doing.

[Rustsmith]

Thursday, April 16

Welcome to

ppeterman42, whose RLS has not only affected sleep; but, also being able to sit during the day. It was very frustrating trying to find a doctor who understood RLS and was willing to prescribe the correct medication.

Sorry you are experiencing these problems that many of us know all too well. Please post a note telling us about your current meds and asking any questions that you have so that we can try to offer some suggestions to help out.

[Rustsmith]

Thursday, April 16

Welcome to

Lindy677, who has had RLS for over 15 years and has been taking clonazepam the entire time. The clonazepam doesn’t seem to be as effective and it is causing her to wake up and have sleepless nights causing her some anxiety and depression and affects her overall mental health. She thinks this discussion board will help out a lot with coping with RLS.

Lindy, please post a note asking any questions that you have and answering a few questions such as 1) have you had your iron levels checked, 2) do you have a formal diagnosis of RLS or PLMS and 3) have you tried any other meds other than clonzaepam?

[Rustsmith]

Saturday, April 18

Welcome to

Vikas, who has been suffering from RLS for the since last 15 years. And to date hasn't found the perfect remedy.

Since we are all different, the "perfect remedy" is something that probably doesn't exist, but remedies do. Please post a note telling us about the things that you have tried so that we can offer some more suggestions of alternatives.

[Rustsmith]

Sunday, April 19

Welcome to

tuli, whose RLS causes issues with sleep. She was reprimanded at work for walking around too much and is frustrated because is so hard to explain what RLS is. When she kept having to take more Ropinirole, Methadone was added by her neurologist. That resulted in no more restless legs and arms, and she will be forever grateful for methadone!

You might consider raising the use of the Americans Disability Act (ADA) if they cause more problems at work. Your employer is required to provide you with accommodations for condition and in the case of RLS this means walking around.

[Rustsmith]

Sunday, April 19

Welcome to

Icedzoo, who has suffered from RLS since she was a teenager - here in South Africa general practitioners are generally not interested (they are far too busy) to take an interest in the developments in treating patients with this affliction. Thus it is important to self help. Of an evening if she does not take PEXOLO (pramipexole), she does not get any sleep - thus she is paranoid about taking the medication. Another symptom... she cannot sit for too long... then she has to get up and walk..... which is difficult when you are in company.

We can all sympathize with your issues, including your doctor's disinterest. Please post a note telling us about your Pexola dose asking any questions that you have so that we will know what sort of advice to offer.

[Rustsmith]

Sunday, April 19

Welcome to

meryj49, who suffers from severe RLS. She has tried the different DA and sitting in a tub of salts, massages, physical therapy and hasn't found anything that helps to manage the discomfort, which is leading to no sleep. She is 70 years old.

Has your doctor checked your iron levels? Have you tried one of the anti-seizure meds (gabapentin, Horizant or Lyrica)? These options are actually preferred over the DAs, but most doctors are not aware of that. Please post a note letting us know more so that we can offer our suggestions to help you get some sleep.

[Rustsmith]

Wednesday, April 22

Welcome to

Nisley2, who has had RLS for years and has to take pills every 4 hours night and day. She still has RLS at times and when she do it is severe.

Please post a note telling us about you meds (including dose) and asking any questions that you have so that we can try to offer some specific suggestions for improving the control of your symptoms.