Restless Legs Syndrome (RLS) Discussion Board

Wednesday, February 1

Welcome to

LavenderCat, whose quality of life has gone done due to lack of sleep.

Are you doing anything to manage your RLS to try to get some sleep? We can offer suggestions that can help if you post a note telling us a bit more about your situation.

Thursday 2 February 2023

Welcome today to

Snowgroomer who has severe RLS starting in 1980 which shows in my upper limbs and chest if not properly controlled. Currently on high dopamine which is causing sleeplessness. 1 week into a program of reducing the pramipexole and co-managing with pregabalin. Unknown what levels to be at with the aim to reduce pramipexole to zero due to augmentation.

If you will make a post giving us details of your pramipexole and dopamine dosages and how you are currently weaning we will do our best to help.
Do you have the support of your doctor and is he likely to be considerate regarding the prescribing of a low dose opiate for further support while weaning.

Thursday, February 2

Welcome to

tginsanvito, whose RLS has affected sleep, both nights and days ever since diagnosis. On those rare occasions when she forgot or ran out of meds, it made for a harrowing experience that those around her that could not understand.

Both running out of meds and having them stop working are both things that most of us can relate to. If you have any questions, feel free to ask or simply join in one of our existing discussions.

4th February 2023

Welcome to

Mzlynnrn who suffers from Sleep interruption, decreased energy, severe pain, difficulty traveling.

We can all relate to your suffering. Please start a thread or join a suitable existing thread giving us some details of what you have been doing to manage your symptoms, your medications if any, dosages etc. This will give us a starting point to try and help you.

Saturday, February 4

Welcome to

Moon, whose RLS is causing social isolation and loss of energy. She is experiencing tack of sleep, infections all the time, loss of memoru and a tired brain. Dopamine and Gabapetine did not help.

Has your doctor checked your iron levels, especially ferritin. Do not accept normal as a result since RLS patients require ferritin levels of at least 75 where normal for others can be as low as 20. If your iron levels are low, you can start by taking oral iron supplements with 325mg/day of ferrous sulfate along with a vitamin C tablet. These should be taken on an empty stomach, so mid-way between meals. And it will take several months before you see any changes.

And feel free to post a message with any questions that you have. We are here to help.

Sunday 5th February 2023

Welcome to Pathologic who has suffered for 3 years with this debilitating disease and wants to learn everything about it. Has tried life style changes, several medications, for very little improvement.

Please make a post telling us what you have done to treat your RLS symptoms including medications and dosages. Have you had your ferritin levels checked (needs to be above 75) this is important. Further information will give us a starting point to try and help you.

Thursday, February 9

Welcome to

g1tiess, who says that RLS can be hell on earth.

We would all agree with that statement. If you have any questions or would like advice, just post a message and tell us a bit more.

Friday, February 10

Welcome to

MalloryL, who has suffered with RLS most of her life. The older she gets, the worse it gets. Doctors around her don't seem to know much. She is on 2 mg of ropinirole. Was on 1200 MG of gabapentin.

If your doctors are willing to learn, you might try sharing this document with them to educate them (and yourself). And feel free to post a message with any questions that you have. https://www.mayoclinicproceedings.org/a ... 0/fulltext

Monday, February 13

Welcome to

pmcjeffers, who is rejoining after having issues with the login procedure.

Welcome back.

Monday, February 13

Welcome to

JVR, who has been suffering from RLS for the last 15 years. JVR is now facing augmentation, which is leading to sleep deprivation. JVR has found the post in the forum very useful.

We are happy that you have found our information useful. If you have any further questions, feel free to post a message and we will do our best to respond.

Monday 13 February 2023

Welcome to:

dgosselink2 who has tried many drugs and supplements. Some have worked for a while, and some have bad side effects. dgosselink2 is losing sleep and has been for a long time, which is worrying for mental health and memory.

Please do make a post giving us details of what drugs and supplements you have tried, together with dosages (if you can remember), and what you tolerated and those that did not work. Just some information to provide a starting point to try and help you. We all understand how debilitating lack of sleep can be.

Monday, February 13

Welcome to

Keithkj325, who has RLS, which makes it is so difficult to relax in the evening. She feels like she needs to move and it has gradually gotten worse. Initially, if she was really tired, like Friday evenings after a long work week, now she experiences this feeling every night.

Have you discussed this with your doctor? Are you doing anything to manage the symptoms? Has your doctor tested your iron levels, especially ferritin, to see if an iron supplement might help? Feel free to post a message with any responses or questions and we will do what we can to help.

14 February 2023

Welcome to

MidnightRambler who has too many sleepless nights and is exhausted during the day. MR is very active and it is keeping MR from doing the things such as skiing, cycling, hiking, because no energy.

Lack of sleep is what drives most of us to initially seek help. Please make a post providing details of your RLS treatment, if any.
Have you had your Ferritin Serum checked, this is important, your level needs to be up around 100. Please tell us what has or has not worked for you. This will give us a starting point to try and help you.

16th February 2023

Welcome today to:

suearbuthnot who has been an RLS patient since 1999, and has dealt with symptoms since in her 20s. After nearly 25 years, began to suffer significant augmentation - about two years ago—beforeshe knew it existed. Now under a physician's care again, and hopes to resolve symptoms effectively and soon. Is interested in learning from others how they've handled this condition.

You will find a gread deal of information here on the discussion board.
Please feel free to ask questions, also providing details of any medications/dosages, and we will do all we can to try and help.

Friday, February 17

Welcome to

haandyjen, who has had RLS for 40 years with gradual progression. Now up and down from 10pm to 4 am. Difficult to work so tired

What are you doing to manage your RLS? Have you had your ferritin checked and know the level?

If you have any questions, feel free to post a message. We are here to try to help you improve your situation.