JUNE 2022 - New Members

[Rustsmith]

Tuesday, June 7

Welcome to

jemullee, who is a longtime episodic sufferer who would like to pass on and receive experiences of others.

We look forward to hearing about your experiences. All that you need to do is to post a note to get things started or you can join in one of our existing discussions.

[Rustsmith]

Wednesday, June 8

Welcome to

Nightwalker999, whose life has been completely destroyed. Nightwalker gets very little sleep, has had no holidays for 9 years, no visits to children, cinema or theatre trips. Nightwalker cannot plan for dental appointments, but had two years with some relief with ropinerole but augmented 10 months ago and now in hell coming off it.

Many of us have been through augmentation, so we know what you are experiencing. There is a way to get around the misery, but it will require the cooperation of your doctor to prescribe a few opioid pills. Unfortunately, most doctors are more afraid of incurring the wrath of the government than they want to help they patients, so we are left to suffer. If you would like to hear comments from those who have taken your route and who can advise you about what happens next, just post a message so that we can advise you further.

[Rustsmith]

Thursday, June 9

Welcome to

5317869, who has refractory RLS. 5317689's symptoms have augmented and now need to go off the Neupro 3mg patch. 5317689 has a lot of anxiety about this because of the possibility that it can be extremely painful. SO, 5317689I would like to learn about other people’s experiences.

Painful probably isn't the correct word for what it is like to get off of a dopamine agonist after augmenting. But you can expect not to get any sleep at all for about a week and your RLS will be the worst that you have ever experienced. There is one way around all of this. If you can persuade your doctor to give you enough opioid pills to last for the week, your transition off of the DA will be "easy". In my case, I was able to convince my doctor to do this by pointing out that I was going to need to start taking opioids anyway, so why wait through a week of being miserable when we both knew what I was going to require once the DA's had cleared my system.

But if you post a note with any questions that you have, I am sure that others will be happy to share their experience(s).

[Polar Bear]

10th June 2022

Welcome today to:

MiYu who has had chronic restless legs for over 10 years - mostly it affects MiYu'[s sleep and fatigue is the main issue.

Lack of sleep is generally what drives a sufferer to first seek help. Please do tell us how you have been managing your symptoms over these 10 years. What medications (if any) have or have not helped you. If you start a thread of your own, or join in with a relevant existing thread, we will do all we can to help. We are all sufferers here and understand completely what it is like to be struggling to sleep and cope with the fatigue that accompanies the lack of sleep.

[Rustsmith]

Saturday, June 11

Welcome to

Curleytc, who has had RLS for 25 years. It has gotten quite severe over the past 10 yrs. While meds initially worked, Curleytc has experienced augmentation due to dopamine meds and is on methadone now but even that’s not working. So, Curleytc is trying to figure out options and determine what would be best.

Many of us have successfully switched to methadone after after augmentation. If you would be willing to tell us a bit about your dosage(s), perhaps we can offer some suggestions that you help you regain control of your symptoms.

[Rustsmith]

Saturday, June 11

Welcome to

Sandykay, whose life has been greatly disrupted with RLS and by the inability to sit down and rest without the sensations coming forth. Anything that involves sitting for a period of time affects her legs. She constantly has to make sure she has pramipexole on hand if she does anything that requires sitting at night and now this does not seem to work anymore.

It sounds like you are starting to augment on the pramipexole. If you will tell us a bit about your pramipexole dose, we can probably tell you more about what to expect and what your future options are.

[Rustsmith]

Sunday, June 12

Welcome to

beatRLS, whose RLS was first formally diagnosed early 2022 but beatRLS has suffered for 3 years prior. Already learned quite a bit from monitoring this board so looking forward to sharing learnings as we all struggles with this.

We look forward to hearing more about your struggles. All that you need to do to get involved is post a note or join one of our existing discussions.

[Rustsmith]

Wednesday, June 15

Welcome to

Hopeless21, who has severe RLS and is not finding the relief she desperately needs. She'd like to find information and talk to others who know what this is like.

We would love to help you out. There is relief available, but sometimes it takes a bit of prodding the doctor to prescribe the meds that can help when your RLS is severe. If you will post a note telling us a bit about what you have tried that hasn't worked, we can point you in the direction of meds that will bring your RLS under control and maybe we will even have to provide help to find a doc who "understands" RLS.

[Rustsmith]

Thursday, June 16

Welcome to

Strang65, who is an RLS sufferer who recently went through DA withdrawal and wishes to learn more about dealing with RLS as he ages.

We hope that you are back on some sort of RLS treatment now that you are off of DAs. Unfortunately, studies generally show that RLS becomes more severe with age. If you would like to discuss this, all you need to do is to post a note and start a discussion.

[Polar Bear]

Saturday 18 June 2022

Welcome today to:

dtache who until he/she recognized that they had RLS, had great difficulty keeping the CPAP mask on throughout the night and was bruxing and having headaches and jaw pain nearly every morning. After recognizing it, and controlling RLS all is well.
dtache is a dentist with a practice limited to Orofacial Pain & Temporomandibular disorders and having had this experience began to survey all patients who were bruxing and found a very high percentage have RLS. They are now helping patients by helping them control their sleep fragmentation due to RLS.

This is very interesting. If you would like to discuss this further do make a post and tell us of your experiences. All my life I have been grinding and clenching my teeth resulting in many crowns.
Also, please do tell us how you are successfully controlling your RLS. We are always happy to hear what treatment is working for a fellow RLS sufferer.

[Rustsmith]

Monday, June 20

Welcome to

bartkramer, who did an overnight session at a sleep clinic July 2021 which gave him an AHI of 104. It also noted a mild restless leg syndrome. He has had nasty headaches for the last 15 months. His sleep doc and he have been working thru this and he was given me a script for gabapentin that has worked wonders on the quality of his sleep and no headache. Ahhh!

Congratulations for getting you mild RLS resolved with gabapentin. If you have any questions, simply post a note and we will try to answer it.

[Rustsmith]

Friday, June 24

Welcome to

hdanforth, who has 20 years of living with this disease and it is not getting any better, really.

Unfortunately, RLS is a condition that tends to get worse as we get older, but there are treatments that can keep the symptoms under control as we age. If you would like to hear about options to your current medications, just post a note telling us what you are currently doing to manage your RLS so that we can offer some suggestions for you to discuss with your doctor.

[Rustsmith]

Saturday, June 25

Welcome to

Carolina, who used to not be able to sit in the evening and would then would have 2-3 hrs of torture in bed every night. Pramipexole changed that which is great. It does come with side effects though.

The other warning about pramipexole is that it will eventually stop working and cause augmentation. Hopefully this is many years out for you. If you have any questions, feel free to post a note so that we can try to answer them.

[Polar Bear]

Sunday 26th June 2022

Welcome today to:

Mooonwalker who has had RLS and PLMD since childhood. Getting worse over the years. Still trying to battle on within meds after severe augmentation on Pramipexole. Moonwalker takes magnesium, iron plus vitamin c and vitamin D plus calcium.

Pramipexole is one of the meds that will eventually cause augmentation. When you say you continue to battle on with meds I wonder have you stopped the Pramipexole and are you now using other meds prescription meds as well as your supplements. If you will make a post giving us some further information we would love to discuss your current medication situation and hopefully help with your symptoms.

[Polar Bear]

Monday 27th June 2022

Welcome today to

joyl0825 who has had rls for 2 years and it is getting worse. Sleep quality is affected. joy takes ropinerole and gabapentin and would like supplement ideas to help. She thinks that her rls plus her rheumatoid arthritis is inherited.

There can be a genetic factor with rls. It could also be that your current medication is not the best for you. Please do make a post and tell us about your medications dosages and have you ever had to increase your ropinerole. Have you tried other medications, prescribed or otherwise. If you provide further information we will do our best to help you.