OCTOBER 2020 - New Members

[Rustsmith]

Friday, October 2

Welcome to

Val, whose first episode with RLS was when she was 17. She learned to deal with it by having a hot bath just before bed. This usually worked. Then she had four joint replacements and hasn't been able to get into the tub anymore. She has been trying to deal with it using Magnesium. It no longer is working. She is now getting about 3 hours of sleep a night, in 1 hour increments. The rest of the night she is up walking and cleaning house, at the kitchen table on her laptop or testing the situation out by reclining on the couch, before heading up the stairs to bed. She is wearing out.

If you haven't already done so, you should ask your doctor to check your iron levels, including ferritin, which isn't usually part of a normal iron test. It could be that all you need is iron supplementation. A medication like gabapentin might also help, but you need to ask. If you have any questions, please feel free to post a note with them. That is why we are here.

[Rustsmith]

Saturday, October 3

Welcome to

Carnio, who I is in his 40s. He has had RLS since childhood but in the last ten years it has become very severe. He has whole body restlessness and cannot sleep without medication. Unfortunately medication has only been mildly effective. Life has become quite torturous and he is desperate for help!

We would love to be able to offer you some suggestions. If you would post a note telling us a bit about the meds that you are using, we should be able to offer some suggestions that will help you get some relief.

[Rustsmith]

Saturday, October 3

Welcome to

Alliecoffee, who has had RLS for over 30 years and she has tried literally everything on the market from home remedies, compression, walking around to the likes of Mirapex Gabapentin and Horizont to name just a few. When everything else stopped working the only thing that is working right now as an opioid but there's a such a stigma attached to taking an opioid when it is the only thing that is effective. My quality of life without it is 0.

Many of us use an opioid and feel exactly the same way. If you have any questions, feel free to post them so that we can try to answer them.

[Rustsmith]

Sunday, October 4

Welcome to

RAS, who was just diagnosed with RLS. RAS has not had a good nights sleep in 1 1/2 years due to leg pain that is horrible.

We are happy that you found us, but sorry that you had to. If you have any questions, just post them and we will be happy to try to help you get some sleep.

[Rustsmith]

Sunday, October 4

Welcome to

Prorenata, who has had RLS for 55 years and is 99% better now that she is on medication prescribed by her doctor. She had RLS so bad that she told her PCP that if she had to give up all medications but one she would choose her RLS medication. She literally fears augmentation and sometimes has break through RLS and wonders, okay is it happening.

Augmentation tends to be slow and sneaky for most of us. You aren't sure it is happening until it is too late. We hope that this is truly a long time off for you. If you have any questions, don't be afraid to post a note with them so that we can try to answer them for you.

[Rustsmith]

Sunday, October 4

Welcome to

tonyadam, whose life is now living around RLS episodes rather than the other way around. His nightlife, starting from about 8 PM until 12 midnight, does not leave much room for a normal life. He is usually on the floor moving around while trying to watch TV but even that sometimes can be difficult. He is on ropinirole but only 1 mg. He believes he is already in augmentation. As a coincidence, he happened to miss his AM prescription of 2 BP meds (Bystolic and Losartan) and the day was much better until he remembered to take them at around 10:30 PM and then the episodes started. He is wondering if these BP meds may be causing or initiating the symptoms. He also about to move to gabapentin and would like to know the best way to transition to this drug from ropinirole.

BP meds are not usually seen as RLS triggers, but we are all different. As for switching to gabapentin, starting gabapentin is easy. Stopping ropinerole will be very challenging for you unless your doctor provides a short course of an opioid to cover the withdrawal. Without an opioid, you face about 7 days of zero sleep and the worst RLS symptoms you have ever experienced. After that, you start to get a little more sleep each day for the next couple of weeks. Gabapentin simply isn't strong enough to overcome this.

[Rustsmith]

Monday, October 5

Welcome to

aljsteiner, whose RLS has him on the highest possible dose of Mirapex and still he has RLS 60% to 90% of the day, with possible problems going to sleep.
He also have some triggers from food, but is unclear about what food because sensitivity varies each day. However, he mostly has some increased RLS after eating.

If you have been on a high dose of Mirapex for a while, then you are probably experiencing augmentation. Augmentation is a side effect of taking a dopamine agonist that most doctors are not familiar with. Take a loon through our Augmentation forum and feel free to post a note with any questions that you have.

[Rustsmith]

Monday, October 5

Welcome to

Twitcher, whose RLS has gotten worse over the years, but she can recall being around the age of 8-9 and feeling the pain. The past year has been the worst and it's now spread from just pain in her knees to being all the way from ankles to hips. It's awful.

Unfortunately, for most of us our RLS gets progressively worse as we get older. If you would like some specific suggestions to improve control of your symptoms, just post a note telling us what you are currently doing so that we know where to start.

[Rustsmith]

Monday, October 5

Welcome to

Connidale, whose RLS now also affects her arms. She can't seem to find a lifestyle change or at-home treatment that gives her any relief.

Most of us had to resort to medications to control our RLS many years ago. If you want to try to not use meds, soaking in a very hot (or cold) bath helps to temporarily turn off the need to move so that you can fall asleep.

[Rustsmith]

Tuesday, October 6

Welcome to

blipblop02, who hasn't been officially diagnosed yet, but based on descriptions of RLS, blipblop is pretty sure that is what it is. blipblop sometimes get it in the evening while watching TV, when it's close to bedtime. When that happens, blipblop can't remain sitting. Occasionally blipblop gets it after going to bed, and then blipblop can't get to sleep.

Doctors cannot run a test to diagnose RLS. The best that they can do is ask the series of questions found at http://irlssg.org/diagnostic-criteria. If you have RLS, your doctor should check your iron levels by running an iron panel PLUS ferritin. When you get the results, your ferritin level should be over at least 75. Don't accept a result of "normal" since anything over 20 is fine for everyone who doesn't have RLS.

[Rustsmith]

Tuesday, October 6

Welcome to

NurseyNic, who has suffered with RLS for years and is finally wondering how other people cope.

We cope by using various medications or combinations of meds to manage the symptoms. We would be glad to tell you more or to answer any questions that you have if you will post a note asking what you wish.

[badnights]

Welcome today (Oct \8) to La7de, who is having a terrible time sleeping because her RLS has gotten so bad. She has treated it for years with Hylands natural RLS pills but those pills have stopped working. Her doctor is trying different meds, but the side effects are scary and she is leery of too many pills. She has to take over 20 pills daily already due to other health issues, so side effects already make life a real challenge.

We are so sorry you have to be here! Balancing medications is very tricky. I wonder if a change in one of your other medications coincided with the worsened RLS/WED? Many medications trigger WED/RLS symptoms, so try to think if there was anything new around then - not just prescribed medications but also supplements and over the counter stuff.

You can start a Topic of your own to introduce yourself better to everyone, tell us more about your WED/RLS symptoms, how and when they got worse, and what other meds you're on. You will get lots of advice; everyone here has gone through something similar, so you're in good hands.

[Rustsmith]

Thursday, October 8

Welcome to

kaydee1958, who is severely affected by RLS to the point of becoming suicidal.

Please, please, please post a note telling us what we can do to help you. There is help as well as hope. We very much want to help you find a solution.

[Rustsmith]

Thursday, October 8

Welcome to

vkayath, whose RLS and associated sleeplessness have affected her daily routines. She feels very tired and doesn't have any energy to do any active work around the house on many days. She joined to understand more about the treatment options and other patients' experiences with their medications and treatments.

We hope that you find what you are looking for. If you have any questions or would like feedback, just post a note or join in an existing discussion topic.

[Rustsmith]

Thursday, October 8

Welcome to

Boru, who has had RLS for twenty years and has augmented. These last few months have been the most trying of times.

Augmentation is no fun in the best of times and especially not these days. Have you managed to get off of your dopamine med and onto something else? Hopefully you can learn something from our Augmentation forum that will help you out. If not, feel free to ask.