AUGUST 2024 - New Members

[Polar Bear]

Saturday 17 August 2024

Welcome today to

frank5741 who can't sleep at night. Legs always want to move when he relaxes. Always feels tired.

Difficulties with sleep is often what drives RLS sufferers to seek help. Are you being treated for RLS by your doctor and is he experienced in treating RLS. There is a lot of information here on the Discussion Board which I hope you will find useful. The link in my signature will take you to a document prepared by several expert RLS doctors and is very useful for discussion with your doctor on the best treatment for RLS. If you have any questions please make a post and we will do our best to help.

[Polar Bear]

Sunday 18 August 2024

Welcome today to

Amymil73 who has terrible sleep, keeping herself and her partner awake. Such an uncomfortable feeling.

To try and help you we would need to need some background as to what you have tried to relieve your symptoms. The link in my signature will take you to a document prepared by esteemed experts in the treatment of RLS. This document is very useful for discussion with your doctor. If you have any questions please feel free to make a post, ask questions, provide some details, and we will do what we can to guide you in the way forward.

[Rustsmith]

Sunday, August 18

Welcome to

sl4878, for whom probably the most negative aspect of RLS is loss of sleep. Secondarily is the difficulty sitting still at the end of day so sl can't do things like going to the movies, evening dinners, or any event that requires sitting still. sl can't do long car rides, can't sit at the computer for too long, etc.
Also sl does not want to take meds - they all have side effects that limit activities even more and since sl just started there is the worry about augmentation - then what? sl has been lucky enough to have a healthy life with only minimal sleep problems (after menopause) and was always active so this is very difficult.

RLS is a tradeoff. Although there are the negative aspects of side effects, sleep deprivation and loss of quality of life have to be considered. Has your doctor checked your iron levels, especially ferritin. Some mild to moderate RLS suffers can experience significant improvement by increasing their ferritin level to over 100 (some doctors will say that over 20 is "normal", but that isn't true for us). You can also learn more by reading the document in my signature or simply by posting a message here with any questions that you have.

[Rustsmith]

Sunday, August 18

Welcome to

Amymil73, whose RLS is causing her sleep to be terrible and his keeping her partner and Amy awake. It is such an uncomfortable feeling.

Only those with RLS can understand how uncomfortable the feelings are and how much they destroy sleep. Is your RLS currently being treated by a doctor? Do you have any questions that you would like to ask. All you need to do is to post a message and ask so that we can try to help you out.

[Polar Bear]

Monday 19 August 2024

Welcome today to

jrouse whose RLS has made life a challenge, every night. jrouse is often forced to cancel activities due to lack of sufficient sleep and is unable to drive over 30 miles due to excessive daytime sleepiness.

Lack of sleep is what often leads an RLS sufferer to start searching for further information. Have you had your Ferritin Serum checked. This is a specific blood test and needs to be requested as it is not part of the usual blood panel. Some labs consider 20 to be 'normal' but an RLS sufferer does better if their level is up around 100 and sometimes this can be sufficient to reduce symptoms. Always know what your FS level is.

Take a look around the Just Joined Forum and see what you can relate to. We are all RLS sufferers and can understand how night time is a major challenge. If you have any questions just make a post and we will try to help.

[Polar Bear]

Tuesday 20 August 2024

Welcome today to

titaniumbuyer who doesn't sleep for more than 4 hours a night.

We understand what it is like to not get enough sleep. Have you had your Ferritin Serum checked. This isn't done automatically as part of a blood panel and your doctor must specifically request it. As an rls sufferer we want it to be up around 100 and not just 'normal' whicn can be anything from 20+. If you have any questions please do ask. Just provide some details about how you have been treating your symptoms. We will take it from there and do our best to try and help you.

[Rustsmith]

Tuesday, August 20

Welcome to

LBK, who has been managing her RLS pretty well but thinks that she is now dealing with augmentation. Vaping medical marijuana has been helpful, but doesn't seem to be working anymore. She wants to see what others are saying on the discussion board, and also share what she has learned. The sleep deprivation has a big effect on her life. She is a 73 year old professional woman and work with a sleep specialist at Cornel Weill Sleep Center in New York.

If you are experiencing augmentation, the first thing is that you will need to get off of any kind dopamine agonist, which is something most doctors do not understand. Stopping is difficult and what you will need to do will depend upon your current dose.

You can learn more by reading the document that the link in my signature points to and, of course, you can always post a message on the board and ask any questions that you have.

[Polar Bear]

22 August 2024

Welcome today to

ronny453 who himself is not affected by Restless Legs Syndrome but his wife is, and she wants to inform him better about it.

It's great that you are willing to learn more about this horrible disease that can affect all aspects of life. There is a lot of information on this Discussion Board and you should probably start with the Just Joined Forum. It can be difficult to explain just how badly the RLS symptoms make us suffer. Well done to your wife for directing you to us. And well done to you for being willing to learn. If you have any questions please just make a post and we will do what we can to try and help. Thank you for being supportive to your wife.

[Rustsmith]

Thursday, August 22

Welcome to

BNick, who is at least the third generation with RLS. His symptoms vary from OK, to tolerable, to bad, to horrible with no particular sequence or logical reason why. Reading reviews, his case seems to be about a 6 on a scale of 10. He is leaving with my wife in a couple of weeks for a 10-day Viking cruise. It may be heaven or absolute hell.

Some people find that they symptoms ease a bit during vacations, others do not. I have been on cruises where my symptoms were well controlled and others where I was out walking the decks all night. On the latter, I got to know the night staff very well. I hope that your symptoms stay under control so that you can enjoy the trip.

As for your RLS, if you have any questions that you would like to ask, just post a message. It doesn't need to just be about your trip, any RLS question is fine.

[Rustsmith]

Friday, August 23

Welcome to

LovesDukeCity, whose partner has RLS and they are concerned about augmentation.

You can learn about augmentation by reading some of the posts in our Augmentation forum, by reading the document that the link in my signature points to or you can simply post a question about it for us to reply since most of us have been through that experience.

[Polar Bear]

23 August 2024

Welcome today to

patkaras who has had RLS since a child. patkaras2226 has been on Pramipexole for 10 years and needs to wean off.

If you have been on pramipexole for 10 years it is possible that you may have augmentation. Did your symptoms get worse and was your Pramipexole increased. If you haven't already augmented it is likely that you eventually will. Do some reading on the Augmentation Forum.
Regardless, you should indeed wean off the pramipexole beause it is no longer considered the first line treatment for rls.
How well versed is your doctor in the treatment of rls. Have you had your Ferritin Serum checked. As an rls sufferer It should be up around 100. Always know your number because often 20+ will be considered normal.
The link in my signature will take you to a document prepared by expert RLS Doctors on how to treat rls.
Weaning off the pramipexole is not easy but is well worth the hardship to become free of this drug.
If you have any questions please do make a post, giving some background information, and we will do our best to help you.

[Rustsmith]

Saturday, August 24

Welcome to

skamnitzer, who was diagnosed with Parkinsons and RLS 2 1/2 years ago but now realizes that his RLS has been there for 10 + years but has been steadily getting worse. It is by far his worst Parkinsons related symptoms and occurs only in his lower leg, ankles and feet so far. The RLS makes him scared to travel or get out of the house at all, Exercise helps but he needs to rest sometimes. Sleep is a big problem,

His neurologist wants to start him on a dopamine agnostic but he is worried about augmentation. A non drug therapy would be nice.

Treating RLS that occurs with Parkinsons is different than treating RLS alone. Although Parkinsons and RLS occur in the same part of the brain, the causes are different. With Parkinsons, the neurons are dying and therefore stop producing dopamine. With RLS they just don't work with the dopamaine the way that they should. As I understand it, augmentation is far less likely to occur when you have Parkinsons, but this is a question that is best answered by a neurologist that specializes in movement disorders. Hopefully, your neurologist falls into that category and is not a "generalist" neurologist. If your doctor is a generalist, you might want to ask for a referral to a movement disorder specialist since Parkinsons + RLS makes things more complicated than either disease by itself.

[Polar Bear]

24 August 2024

Welcome today to

Mckibbendb who has had restless leg syndrome for over 30 years. Most of the medications lead to augmentation. It is really affecting Mckibbendb's sleep.

Sleep issues are what often send an rls sufferer seeking further information. The medications which lead to augmentation are the Dopamine Agonists such as Ropinerole and Pramipexole. (It has been reported that Tramadol can rarely cause augmentation). Other medications such as Gabapenten/Pregabaline used to treat rls do not cause augmentation. There is also iron treatment. Many of us eventually use an opioid. The link in my signature will take you to a document prepared by experts in the treatment of rls and this can be useful for discussion with your doctor.
If you have any questions please make a post giving some background information on your current treatment and we will do all we can to try and help you.

[Polar Bear]

28 August 2024

Welcome to

Briggs1978 whose Restless leg at times makes life unbearable. There are some evenings when it is difficult to find relief. It can be discouraging since quality of sleep is lessened. Briggs1978I would love to hear other people’s stories of how they have found relief from RLS.

It is often sleep issues that drives rls sufferers to seek further information.
Have you had your Ferritin Serum checked, your level as an rls sufferer would be best up around 100 and not just 'normal' which can be anything from 20+. The link in my signature will take you to a document prepared by expert RLS doctors in the treatment of rls and which would provide an excellent basis for discussion with your GP. If you have any questions please make a post, providing some details of your treatment, and we will do our best to help.

[Rustsmith]

Wednesday, August 28

Welcome to

JulieYT, whose RLS has recently become much worse. She is hoping to get some support from other sufferers.

We would be very happy to provide whatever support to you that we can. It would be very helpful if you would post a message that provides a description of your RLS meds and that also tells us if your doctor has done tests to determine your ferritin number.