March 2024

[Rustsmith]

Saturday, March 2

Welcome to

Lwagnon, who needs help from a group. It helps to have a group that chat about their problems and that you can ask questions.

That is why we are here. All that you need to do is post a message or join in any of the existing threads.

[Polar Bear]

3rd March 2024

Welcome today to

Victoriag who says.... What life? Day and night... constantly exhausted. at the lowest point she has ever been. Ropinerole made her violently sick, pramipexol and madopar she suffered augmentation. Pregabalin didn't touch her. Currently taking gabapentin but no sign of letting up.

RLS does indeed make life pretty miserable. Have you had your Ferritin Serum checked so that you know what your level is. It needs to be up around 100. Make sure you know the actual figure and don't accept anyone advising that it is 'normal'. Normal can be anything from 20+. If you will make a post giving us your rls treatment regime, medications/dosages, we will do our best to try and help.

[Rustsmith]

Sunday, March 3

Welcome to

Bweymouth, who has terrible RLS and has finally found something that works but still wants to see what others are saying.

Please understand that many of us found RLS treatments that then stopped working, so you need to continue to educate yourself (and maybe your doctor) about all possible treatments. You can find may comments in the discussion thread in our files. You can also see the latest treatments recommended by the experts by reading the document that the link in my signature points to.

[Polar Bear]

Monday 4 March 2024

Welcome today to

LeeT whose RLS started at around 50 years of age.. Did not know what it was until later. Big impact is on LeeT's sleep. To sleep through the night 2 nights a month it is remarkable. Lack of sleep is the biggest impact on LeeT's life now.

Sleep is indeed what drives most sufferers to seek help and every one of us understand how you feel.
Has your Ferritin Serum been checked and is it high enough, up at around 100. Always know what your level is, know the number and don't accept being told that it is 'normal'. What are your medications, if you are indeed taking any medications.
If you post and provide some details of your rls history and treatment we will try and help you.

[Rustsmith]

Monday, March 4

Welcome to

prickard, who has RLS and is looking for alternatives to Ropinorole.

There are a number of treatment options to ropinerole. The choice depends on why you need to change. You can get an idea by looking at the document in the link in my signature. You are also welcome to post a note to tell us a bit about why you need to change or simply to ask questions about RLS. We area all happy to try to help you out.

[Rustsmith]

Tuesday, March 5

Welcome to

dgaede, who has RLS and it has caused severe problems including sleep and traveling.

Those are issues for all of us. If you have any questions or need advice about your treatment, just post a message for us.

[Rustsmith]

Tuesday, March 5

Welcome to

SleepyVal, who didn't know what RLS was until having a sleep study for OSA and was then diagnosed. SleepyVal had it for over 20 years. Meds helped, but now has in augmentation, has moved, and is struggling to get good treatment.

Finding a provider who understands how to treat RLS, much less augmentation can be a major challenge. If you are anywhere near on of the RLS Foundation's Quality Care Clinics, they are your best bet, even if it means that you need to travel. Otherwise, start calling every doctor in your area that accepts your insurance, starting with the neurologists that specialize in movement disorders. As to speak with a nurse. Don't ask if the doctor is familiar with treating RLS because the answer is almost always yes even when that isn't true. Ask how many RLS patients with augmentation the doctor treats and whether the doctor is willing to prescribe opioids for chronic neurological conditions that are not pain related. The answers are usually quite telling.

And please feel free to post a message here with any questions that you have. There are more ways to find doctors than just the two listed above.

[Rustsmith]

Tuesday, March 5

Welcome to

lakemom70, whodr RLS prevents her from enjoying or participating in activities. It negatively affects her mood and well-being. It's becoming dangerous to drive over 30 minutes because she is so tired all the time.

What sort of treatment is your doctor providing to treat your RLS? Has your doctor done blood testing to determine your ferritin level and do you know the number. Don't accept a report of "Normal" because normal is anything over 20 and we need to be over 100.

You can learn more about the latest treatment recommendations by reading the document that the link in my signature points to.

[Polar Bear]

Tuesday 5 March 2023

Welcome today to

KALB0333 who wants to keep up to date with current research and funding and individual experiences. To share information. To share opinions.

We hope you find this site useful and interesting. If you have any questions please make a post and ask.

[Rustsmith]

Tuesday, March 5

Welcome to

Flash, who has been in very good health for Flash's whole life. Flash is now facing an unfamiliar physical condition with RLS. Flash gets a little apprehensive as the evening hours approach not knowing how severe the symptoms will be.

Fear as of bedtime approaches is something that most of us can appreciate. Is your RLS being treated by a doctor? Do you have any questions that we could help answer. All you need to do is post a message to let us know how we can help.

[Polar Bear]

7 March 2024

Welcome today to

PaulaWesterlund who is 88 and very sleep deprived, hence dragging in the daytime. Thinking now she is experiencing augmentation, since the restlessness begins 5 minutes after laying down at night after taking 50mgs. of ropinerole. So has to get up and become a Nightwalker and a leg exersiser. She feels
tormented and can't even begin to relax. Is unable to sit still and read or do something quiet during the day and is also unable to take naps
even though feeling exhausted. She is starting to feel desperate. These are certainly not her golden years.

The first thing I notice is that you say you are taking 50mgs of ropinerole at night. Are you sure you don't mean 5 mg. (or hopefully less). If you are taking 5mg this is still way too high. The max advised by most RLS experts would be 1mg ropinerole daily. Has your Ferritin Serum level been checked which should be up around 100 for an rls sufferer and not at the 20 plus which is acceptable as normal. You need to specifically request this blood test as it is not done as a part of a normal blood panel check.
If you will make a post giving details of your RLS treatment and confirming doses we will do our best to help. Please ask any questions that come to mind.

[Polar Bear]

8 March 2024

Welcome today to

Stephen who has been long suffering with RLS. Taking Gapabpentin with no relief. What’s next?

Is Gabapentin the only medication you are taking to treat your rls symptoms? Sometimes it needs to be supplemented with another medication.
Have you had your Ferritin Serum checked. Make sure you know what level this is at i.e. hopefully up around 100. Don't accept just being told it is normal, ask for the number. You will have to request this test to be done as it's not a part of the usual blood panel.
Take a look at the link in my signature where there is information about treatment.
Please ask any questions that come to mind. All you need to do is make a post.

[Polar Bear]

Sunday 10 March 2024

Welcome today to

Watermannz9 whose Restless legs have caused little sleep each night. Some nights the pain to almost unbearable.

Lack of sleep is what drives many RLS sufferers to initially seek help and remains a challenge for many. If you will make a post giving details of your RLS treatment, medications and dosages, if any, we will do what we can to help.
Some sufferers will find temporary relief by soaking their legs in hot water until the symptoms ease and they get a chance to get over to sleep.
I prefer to use icy cold water, that's what works for me. It takes about 20 minutes for me to feel relief.
Please ask questions, we want to do our best to help you.

[Rustsmith]

Monday, March 11

Welcome to

shakytown, who has had RLS for 3 years and beginning to again augment on Ropinerole and is looking for alternatives to dopamine agonist type medication. In general it has been somewhat well controlled but has been impacting shaky's sleep more substantially and shaky is hoping for some guidance and suggestions.

Your best bet is to read the document that the link in my signature points to. It talks about how iron therapy (oral or IV) and gabapentin/Lyrica are preferred treatments over the dopamine agonists. However, many of us who have augmented on DAs find that we now need an opioid to control our RLS and that presents a number of problems with finding doctors who will prescribe them for a chronic condition like RLS. If you would like further guidance, just post a message so that we can do our best to help you out.

[Rustsmith]

Tuesday, March 12

Welcome to

tryall, whose RLS causes extreme sleep disturbances and extreme tiredness throughout day.

Are you currently treating your RLS and has your doctor tested your ferritin level? If you have any questions, feel free to post a message so that we can try to help you.