JUNE 2024 NEW MEMBERS

[Rustsmith]

Monday, June 17

Welcome to

lisateer97, whose RLS affects social time, sleep, travel and being able to sit and read.

Any of us can relate to those limitation to our quality of life due to RLS. If you would like some suggestions on how to reduce the effects of RLS on your life, just post a message to us that gives us an idea of what you are currently doing to manage your symptoms.

[Rustsmith]

Wednesday, June 19

Welcome to

AJ4802, who has been living with RLS for nearly 40 years. His condition has become refractory. He is on opioids plus alpha2delta ligands and anti-seizure meds combined but they have limited effectiveness. He is interested in other possible treatments, specifically Spinal Cord Stimulation.

You can find several discussion threads that discuss spinal cord stimulators. All that you need to do is to use the search box in the upper right hand corner and search "Spinal Cord Stimulation", or you can post a message and let our members who have been through the procedure to tell you about it.

[Rustsmith]

Wednesday, June 19

Welcome to

Jhempler, whose RLS is a nightmare but at least with a literal nightmare you are asleep! The lack of sleep is more than she can handle. RLS is a nightly occurrence for her.

Is your RLS currently being treated by a doctor? If you would like suggestions on how to improve management of your RLS either post a message or take a look at the document that the link in my signature points to.

[Rustsmith]

Thursday, June 20

Welcome to

Pjgjones, who has been dealing with RLS for a few months. No sleep. Driving Pjgjones crazy. Makes working full time very hard,

Is your RLS being treated by a doctor? Do you know your ferritin number and is it over 75? If you would like some suggestions for regaining control of your life, just post a message and let us know how we can help.

[Polar Bear]

Friday 21 June 2024

Welcome today to

bhud7 who was first diagnosed in 2020 and treated with ropinerole until experienced augmentation. The RLS site was very helpful in bhud7's journey and conversations with doctors. Over the next year tried different treatments and now takes opioid to control RLS.

We are glad to hear that you have achieved some control of your RLS. It's good to hear that the site helped you.
If you have any questions please feel free to ask. We try to help as best we can.

[Polar Bear]

Friday 21 June 2024

Welcome today to

markhat56 who has just started to experience augmentation. Mark is on Pramipexole and has been told it's not reversable, but that he should use gabatartine to stay on current levels for the rest of my life.

Are you saying that the doctor has told you that augmentation is not reversable. Augmentation can be dealt with by getting off the Pramipexole which is not an easy journey but can be done, by tapering. Gabapentin will not be sufficient to cover RLS symptoms while doing this and we always hope that an understanding doctor will provide a low dose opiod to support the tapering. If you will make a post and provide details of your medications/dosages we will do our best to help you.

[Polar Bear]

Friday 21 June 2024

Welcome today to

ClaudiaM who was diagnosed in 2013. Managed with medication and exercise.
Affects include not being able to sit for any period of time from about 3pm.sometimes medication doesn’t work as expected resulting in not getting to sleep until late at night or early morning.

We all understand the issues you mention. Has your doctor checked your Ferritin Serum level which us RLS sufferers benefit from having at around 100 and not accepting that it is 'normal' which can be anything from 20+. This has to be specifically requested, it is not part of a general blood panel. When you feel ready just ask any questions that come to mind. We are here to try and help.

[Polar Bear]

Saturday 22 June 2024

Welcome today to

Ellebee2898 who needs to talk about this because she feels like she is losing her mind! She can’t sleep and feels that her current Dr either isn’t interested in helping or just doesn’t know how to.

Many GPs really don't know how to treat RLS. Some are willing to learn, others may be out of date. The link in my signature is very useful for discussion with your doctor. Unfortunately sometimes even a neurologist/consultant may not prove to be as familiar with the treatment of RLS as we would expect. We understand when you say that you feel you are losing your mind and are sorry that you are suffering like this. You will find useful information starting with the Just Joined Forum. Please feel free to make a post, telling us how your symptoms are currently being managed and what has and has not worked for you. We will do our best to try and help you.

[Rustsmith]

Sunday, June 23

Welcome to

Jan1960, who needs more information on RLS and how others are coping

You can find out about the diagnosis and treatment by reading the document that the link in my signature points to. If you don't find what you need about how others cope, just post a message and ask whatever questions that you have.

[Polar Bear]

Monday 24 June 2024

Welcome today to

JJCK who is getting worse and finding that nothing is working and now goes all the way up to JJCK's stomach, it feels like JJCK is dying sometimes.

RLS is such an unrelenting condition. Has your doctor checked your Ferritin Serum Level and if so do you know what level you have. Us sufferers want it to be up around 100 and not just 'normal' which can be anything from 20+. Have you been taking a Dopamine Agonist such as Ropinerole or Pramipexole in which case you may be augmenting and will need to come off this medication which is not an easy task. If you will make a post giving us details of what medications have or have not helped you we will do our best to help you. Please ask any questions that come to mind.

[Polar Bear]

Monday 24 June 2024

Welcome today to

lascruff671 who is hopelessly nearing the end with this and has no idea what to do. Has tried so many things and it seems this may be the last hope. lascruff671 is hoping to find like minded people and a solution. Feels it is not sustainable at this rate.

We are all like minded people, all rls sufferers and all understanding of each other. I suggest that you read through the Just Joined Forum to get the feel of it and see if you can relate to any of the threads. If you have any questions just make a post giving us some background information about how you have been trying to manage your rls symptoms and we will try to help you.

[Rustsmith]

Monday, June 24

Welcome to

Thebooklady, who is looking for information and support from other sufferers.

We would be happy to provide whatever information you need. All that you need to do is post a message that explains what you are looking for.

[Polar Bear]

Tuesday 25 June 2024

Welcome to

BillyWakarusa who is a Retired Pathologist with wide and deep knowledge of disease and with personal experience with RLS since age 11 He feels his own experiences and knowledge would make a useful contribution.

We are always interested to hear of the experiences of our members and will look forward to hearing how you have managed your RLS journey.

[Rustsmith]

Tuesday, June 25

Welcome to

allentabor, who at age 74 and has been dealing with RLS since his 20's. He has been thru Sinemet then pramipexole and gabapentin. He deals with moderate to severe symptoms and augmentation every day for 8 to 12 hours and feels like his is at the end of my rope. He hopes to find an MD who he can educate and possibly explore treatment with opioids.

Many of us get relief from opioids once we convince a doctor that we won't become addicted and really do need them. The challenge is finding a doctor willing to be educated.

You will find quite a few discussions on this topic in past discussions. However, you are certainly free to post a message with your question so that we can provide you with our experience in this area.

[Rustsmith]

Tuesday, June 25

Welcome to

MP56, who has had RLS for decades. It was horrible when she was pregnant 22 years ago. Now that she is menopausal, estrogen caused it to flair, so she quit taking estrogen. For some reason the last few months, she has had low grade RLS pretty much every night although occasionally she will have a night without it. For relief, she takes hot baths in the middle of the night, sometimes two or three. She is Looking for a solution.

Your situation could be low iron levels. Talk to your doctor about getting a blood test to check your ferritin level. Be sure to request ferritin since it is not included in a normal iron panel. Also be aware of the fact that a ferritin test needs to be done while fasting.

If your ferritin number is below 75, it could be that all that you need to do is start an oral iron supplement.

If you have any questions, feel free to post a message so that we can try to help you out.