AUGUST 2022 - New Members

[Fly007]

Thank you PB, the last 6 weeks have been pure hell, I will post details in the new members forum.

[Polar Bear]

Tuesday 16 August 2022

Welcome today to

ParrotFish - who has been bothered by RLS for about 2 years, and it seems to be getting worse. not getting good quality sleep, and ParrotFish is concerned about how this affects overall health.

Lack of quality sleep can affect our overall health in many ways. Please do post in our Just Joined Forum, giving us some information about your medication regime, if any, and what you do to try control your symptoms. We will be happy to take it from there and try to help you control your symptoms and achieve better sleep.

[Rustsmith]

Wednesday, August 17

Welcome to

MaryKaye, who is looking for information on where to get treatment for augmentation. She would like to see what others have experienced during the withdrawal.

You can find most of what you are looking for in our Augmentation Forum. As for where to get treatment, that can be the challenging part. If you live within reasonable traveling distance of one of the Foundation's Quality Care Clinics, they can help you. Your next best bet would be a movement disorder neurologist at the nearest major medical school's Neurology department. You can try calling all of the neurologists in your area, starting with those that claim to be movement disorder specialists, and ask to speak with a nurse to ask about the doctor's experience with treating augmentation. And if none of that works and you have a PCP that is cooperative and willing to learn, you can try sharing this recent publication by the leading RLS experts:
https://www.mayoclinicproceedings.org/a ... 0/fulltext

And if you still have questions, feel free to post a note and let us know what we can do to help.

[Rustsmith]

Wednesday, August 17

Welcome to

lavalier, who has been suffering with RLS since she was a child. No one understands unless they have RLS.

I think that anyone with RLS would agree with that statement. If you have any questions, feel free to post a note and we will do what we can to answer them.

[badnights]

Wednesday, August 17

Welcome to

MaryKaye, who is looking for information on where to get treatment for augmentation. She would like to see what others have experienced during the withdrawal.

You can find most of what you are looking for in our Augmentation Forum. As for where to get treatment, that can be the challenging part. If you live within reasonable traveling distance of one of the Foundation's Quality Care Clinics, they can help you. Your next best bet would be a movement disorder neurologist at the nearest major medical school's Neurology department. You can try calling all of the neurologists in your area, starting with those that claim to be movement disorder specialists, and ask to speak with a nurse to ask about the doctor's experience with treating augmentation. And if none of that works and you have a PCP that is cooperative and willing to learn, you can try sharing this recent publication by the leading RLS experts:
https://www.mayoclinicproceedings.org/a ... 0/fulltext

And if you still have questions, feel free to post a note and let us know what we can do to help.

You can also search other forums for "augmentation"

[Rustsmith]

Sunday, August 21

Welcome to

Sharkey1337, who has had RLS since she was 12 years old and at first it was intermittent but the past 4 years it has been every night. She is currently dealing with augmentation from levodopa. The augmentation has been going on for 20 nights and there doesn't seem to be an end in sight.

Are you still taking Carbidopa/levodopa? If so, the augmentation is going to continue until you get off of it and switching to a long lasting dopamine med (pramipexole, ropinerole or rotigatine) is not going to help. You probably need to switch to gabapentin or Lyrica. And have you had your ferritin level checked? Your ferritin should be over 75 or 100. Don't accept a report of "normal" since normal for non-RLS patients can be as low as 20.

If you have any questions or would like to further discuss alternatives, just post a note.

[Rustsmith]

Sunday, August 21

Welcome to

Restlessbody57, who has had RLS for 30 years. It is getting worse and it is driving him crazy.

We would love to provide whatever information that you need. We can discuss medication options, augmentation or current research. All that you need to do is post a note telling us what we can do to help you regain control of your RLS.

[Rustsmith]

Tuesday, August 23

Welcome to

BRIGGSM, who has had RLS since 2020.

We would love to be able to help answer any questions about RLS that you have, make suggestions about medications or even how to find the best RLS doctors. All that you need to do is post a note and tell us a bit more about what you are doing to manage your RLS.

[Rustsmith]

Tuesday, August 23

Welcome to

jhbrown, whose RLS bothers almost every night. jhbrown wants to hear from other sufferers about what works for them.

If you can around through our various forums, you will see a number of approaches that various individuals have taken. Unfortunately, they don't all work for everyone. In addition to the various levels of medications and iron therapy, you will see things such as diet and even soaking in a tub of hot (or cold) water. Some have had luck with TENS units, others not.

So, it unfortunately often comes down to creating a research project of one (yourself). Try things, if they don't help, keep trying.

And always feel free to ask. Just as in other areas of life, people are always happy to share their opinions.

[Rustsmith]

Wednesday, August 24

Welcome to

steltenpohl, who has had hot feet all his life. His Father also.

If by hot feet, you mean that you have a burning like sensation, that isn't RLS it is a sign of neuropathy. With RLS, you need to have a irresistable urge to move your legs that mainly occurs during the evening (or at night) when you try to rest.

If you have any questions or would like to discuss this further, feel free to post a message.

[Rustsmith]

Wednesday, August 24

Welcome to

Polly1961, who is a sufferer of RLS and is in desperate in need of solutions and support.

We would be happy to suggest solutions and provide whatever support we can. All that you need to do is post a note that tells us a bit about what you are currently doing to manage your RLS and what you have tried.

[Polar Bear]

25th August 2022

Welcome to

Knorris who has severe depression and anxiety. After a sleep study was performed Knorris was found to have over102 limb arousals.

Have you actually been diagnosed with RLS. it would be helpful if you would make a post and tell us about your symptoms while awake and what prompted your sleep study. Do you have the awful urge to move that nothing will help but to get up and move. Have you tried any medication and did anything work. Are your 102 limb arousals jerks. Please post and tell us as much information as possible so that we may have a starting point.

[Rustsmith]

Thursday, August 25

Welcome to

Dr.Placebo, who is a physician who had to retire early because he became too sleep-deprived to continue safely taking care of patients. Now as a patient, he is seeing just how broken the American medical system is. He has refractory RLS and has yet to find an actual RLS specialist who will see him (i.e., accept his insurance). He has been treating himself as best he can, but his life is miserable.

My first suggestion is to take a look at this recent publication by many of the RLS experts that describes the various options available. https://www.mayoclinicproceedings.org/a ... 0/fulltext

Suggestion #2 is to take a look at the RLS Foundation's (bb.rls.org) Quality Care Clinics. All of the clinics are required to treat refractory RLS. If that doesn't work, suggestion #3 us to contact the nearest major medical school. Many of us have found that we have to travel to see a doctor who understands how to treat refractory RLS.

If all that doesn't work, try calling the RLS Foundation and ask them about RLS doctors in your area. The doctors on their list are self nominated, so they are not all truly qualified, but it is a place to start.

Finally, you can try posting a note here and see if any of our members are in your area and can suggest someone.

[Rustsmith]

Monday, August 29

Welcome to

Lkinsella, who said that Dr. Earley has suggested this is a good resource for her.

We are happy that he has that confidence in us. If you have any questions that Dr Earley hasn't already answered, feel free to ask.

[Rustsmith]

Tuesday, August 30

Welcome to

LerpwllWelsh, who has had RLS for more than 60 years. It was controlled by Pramipexole for 30+ years, but in 2021 the efficacy began to wear off even at 0.5mg/day. His doctor recommended switching to gabapentin, and all hell broke loose: no sleep at all for 6 nights in a row, sleep walking, narcolepsy, repeatedly waking up in the process of falling down, turning on the gas stove in my sleep, etc, etc. Not to mention being in such agony that he wished he was dead. They switched him to ropinirole, but it isn't working well even though he is taking twice the recommended dose. Only getting 2-3 hours of sleep most nights. Now she wants him on the rotigotine patch with no plan for the transition. He needs help from fellow sufferers to safely make the transition to the patch - he doesn't want to through what happened with the Pramipexole-Gabapentin transition. He has no faith in the medical profession left at all.

What you went through with the pramipexole-gabapentin transition was the worst phase of withdrawal from a dopamine agonist med. Unfortunately, switching to ropinerole and now rotigatine has once again returned the dopamine dependency that you have before. The only ways out of that loop are 1) go through the one week withdrawal (it slowly gets better after day 6 or 7) or find a doctor who understands RLS and is willing to prescribe an opioid for the six day withdrawal period. The problem you experienced wasn't one of transitioning from pramipexole to gabapentin, it is simply one where the gabapentin isn't strong enough to cover the symptoms of pramipexole withdrawal. Only opioids can do that.

As for rotigatine, it is a close cousin to pramipexole and rotigatine, so you won't go through the hell of withdrawal when you start it, but it is just as difficult to get off of as pramipexole was.

If you think that your doctor would be willing to learn from you, you might try sharing these two documents with her. Our normal suggestion is to highlight a few key passages and then hand them to her and ask her for her opinion of what they have to say.

https://www.mayoclinicproceedings.org/a ... 0/fulltext
https://www.mayoclinicproceedings.org/a ... X/fulltext