JANUARY 2023 - New Members

[Rustsmith]

Tuesday, January 17

Welcome to

eaustin345, who has suffered RLS for as long as she can remember. Her mother also had RLS so she imagines that there’s a genetic link here. She has tried so many things to alleviate her RLS but nothing has worked. RLS affects her sleep and ability to sit for any length of time, making long car trips and air travel virtually impossible.

There are a number of forms of treatment that a doctor can provide that will manage your RLS. The trick is finding a doctor who knows what to do. If you think that your doctor would be willing to learn, here is a document that was prepared by the experts specifically to educate doctors on the latest approaches to managing RLS. https://www.mayoclinicproceedings.org/a ... 0/fulltext

[Rustsmith]

Tuesday, January 17

Welcome to

MySunshine, who is unable to get a good night's sleep. Because of this, she has a very difficult time functioning and staying awake during daytime.

Has your doctor done blood tests to check your iron levels and do you know the numbers? Are you doing anything to try to manage the symptoms? We would be happy to offer you some suggestions, but we need for you to post a message that gives us an idea of where you are now, so that we can have an idea of what to suggest.

[Polar Bear]

Wednesday 18 January 2023

Welcome to

willcb923 who has plmd and is trying to solve it. willcn923 thinks it might be due to b12 and hopes to solve it soon.

Have you had a diagnosis and do you also have rls? Please make a post and tell us of your symptoms in more detail. Tell us what your doctor has done to help. Further details will help us to try and help you.

[Polar Bear]

Wednesday 18 January 2023

Welcome to

BrainZap82 who has suffered with severe primary RLS for over 15 years.

Please make a post giving us more details of your RLS treatment. Has your GP tested your Ferritin Serum which should be over 75 regardless that 'normal' is considered to be 20. What medications have been helpful, and what has not been helpful. If your GP is helpful and supportive it is a blessing. If you will provide us with some history of your RLS and how you are currently managing it this will give us a starting point to consider what may be a way forward for you.

[Rustsmith]

Friday, January 20

Welcome to

manjula65, who has been suffering with RLS for the 1.5 years, and is not able to get a quality sleep.

Have you spoken with your doctor about this? Has your doctor checked the iron levels in your blood? Are you taking anything to help with your RLS?

If you have any questions or would like our suggestions on how to get better sleep, just post a message with a bit more information and we will do what we can to help.

[Rustsmith]

Monday, January 23

Welcome to

Ferg262, who says that RLS is a miserable disease. He had a very bad experience with augmentation from best of intention PCP, and cutting back was torturous. He is stable, but on thin ice with Horizant and Mirapex prescribed by Neurologist, but have occasional RLS at night and cannot nap. If he is ever bed ridden with uncontrolled RLS, he will be suicidal for sure.

I would question whether your neurologist actually understands how to treat a patient who has been through augmentation. The use of another dopamine agonist (Mirapex) after you have already augmented is not usually done. The problem may be that refractory RLS (post augmentation) usually requires the use of an opioid and many doctors will not even discuss that possibility.

If you have any questions, including how to find an RLS specialist, just post a message and we will do our best to answer it.

[Rustsmith]

Tuesday, January 24

Welcome to

llsimmons0824, who is suffering from RLS along with fibro and hip bursitis

If there is anything that we can to to help, such as provide comments on your RLS meds, just post a message with your questions.

[Polar Bear]

28th January 2023

Welcome today to:

RLS1234 who is really struggling with RLS., so many sleepless nights, and is frightened. Ropinirole worked for a while and then felt it was hurting RLS1234 learned that ultimately it augments. Now in the process of reducing ropinirole and on Lyrica and now RLS is worse. 1234 can't stay in bed and needs support, guidance and connection with others who are challenged. 1234 has done many different things to try and help but nothing is working on some nights. like tonight.

Yes, you have discovered that a DA like Ropinerole will eventually cause augmentation. I hope you are weaning yourself slowly off the Ropinerole, it can be very difficult and it is likely that the Lyrica is not sufficient to control the worsened symptoms that you get while reducing the Ropinerole. A sympathetic doctor who will prescribe an opioid short term to help your weaning would be of great benefit. Please make a post and tell us of your various medications and what dosages you are currently taking. This will give us a starting point to so our best to help you.

[Polar Bear]

Saturday 28th January 2023

Welcome today to:

Lucrose who has had RLS for over 20 years. Lucrose is 90 and it is worse than it’s ever been. Lucrose has been on opiates for about 12 and is desperate.

We are sorry that your RLS has become so severe especially as you are already using an opioid.
Do you know what your Ferritin Serum level is, this is a blood test not done in usual day to day blood tests. You need to request this and when you get the result do not accept that it may be normal. Normal can be 20+. Us sufferers of RLS need or Ferritin to be up nearer 100.
Please do make a post and tell us about your RLS treatment and what has or has not worked in the past. What opiate are you taking and what is the dosage. Some detailed information will enable us to try and help you.

[Rustsmith]

Saturday, January 28

Welcome to

Lurose, who has had RLS for over 20 years and is 90. It is worse than it’s ever been. Lurose has been on opiates for about 12 yrs, but is now desperate.

Are you taking a long acting opioid, such as methadone or tramadol ER? If not, your problem might be that it is wearing off before your next dose. If you would like our suggestions (other than talking to your doctor), just post a message that gives us an idea of which opioid you are taking and what dose. Opioids generally work well once you get past the early side effects issues, so all that may be required would be a minor tweak in either which one you take or maybe a slight increase in dose.

[Rustsmith]

Sunday, January 29

Welcome to

dknoll66, whose husband has RLS and the side effects of his medicine are affecting our lives negatively.

We would be happy to recommend alternatives to his meds if you would like some suggestions. All that you need to do is post a message that tells us what he is taking.

[Rustsmith]

Monday, January 30

Welcome to

Meditate 1234, who is suffering terribly with RLS. Meditate is now transitioning off ropinirole and so has many sleepless nights. And then cannot function the next day and becomes anxious about not sleeping.

It takes about a week once you finally stop and then another three weeks to return to whatever your new "normal" RLS is like. Has your doctor said anything about what you will do once you actually get off of ropinerole? Can you start taking that med now?

If you have any questions, feel free to post a message and we will try to share our experience with you.

[Rustsmith]

Tuesday, January 31

Welcome to

chuckput, who has had RLS for many years and has tried many things to resolve it.

There are a few treatments that are effective for most of us. If you would like some suggestions, just post a message that gives us an idea of what you have tried so that we can offer suggestions.

[Rustsmith]

Tuesday, January 31

Welcome to

BenDuddleDan, who says that RLS is unbearable and unpredictable but that he has found a solution.

We would love to hear what has help with your RLS. Just post a note to tell us more.