MARCH 2022 - New Members

[Rustsmith]

Tuesday, March 1

Welcome to

gstlb, who has RLS that is not horrible, but bad enough that he has to address it with medication unless he can find something else that works (nothing else has worked yet).

There are a few ways, such as hot baths, to reduce the symptoms to a manageable state for those with mild RLS, but there comes a point where we all usually end up having to use medications. If your iron levels are low, you might be able to find a doctor willing to write orders for an iron IV treatment, but most of us end up relying upon daily meds.

If you have any questions, feel free to post a note or join one of our existing discussion threads.

[Rustsmith]

Tuesday, March 1

Welcome to

2legsJudy, who wants to learn new solutions to her RLS.

You can find a number of methods to manage your symptoms in our various forums. We have a few non-medication type treatments along with a number of discussions about the meds that work as well as the ones that make RLS worse (such as anti-depressants and allergy meds). If you have any questions, feel free to post a note and we will do what we can to help you out.

[Rustsmith]

Tuesday, March 1

Welcome to

JimmYLegsCanada, who has RLS and PLM so bad that JimmYLegs is at wits end. Nothing works. Things that used to work don't anymore. Help.

There are always meds that will work, but the problem is often finding a doctor who is knowledgeable enough to prescribe them or willing to. If you will post a note to tell us what you have tried, we can tell you what you need to discuss trying next.

[Rustsmith]

Wednesday, March 2

Welcome to

KimXenia, who is a fifth generation RLS sufferer. Both she and her mom are unable to access needed health care at times because they are prescribed methadone. Her 82 year old mother was in an accident last week and was denied pain medication. She had surgery last year and was denied pain medication and screamed continuously for days in the hospital, but no one would help her. I have joined for ideas on what can be done, if anything, to advocate for us and others with RLS.

Logic and reason have gone out the window when it comes to helping patients who truly need opioids. Doctors are simply too scared. If you haven't seen it, you should check out this publication and try sharing it with the doctors (other than the one that prescribed methadone). https://www.mayoclinicproceedings.org/a ... X/fulltext

We would also welcome a post from you that opened up a new line of discussion about things that some of us have done to discuss this topic with our own doctors.

[badnights]

Her 82 year old mother was in an accident last week and was denied pain medication. She had surgery last year and was denied pain medication and screamed continuously for days in the hospital, but no one would help her.

The frightening thing about denying a surgery patient opioids because they're already on opioids, is that prolonged opioid use increases sensitivity to pain. They need more, not less. And what's even more frightening is that I know this, but so many doctors and nurses don't.

[Rustsmith]

Sunday, March 6

Welcome to

Sarah Bunton, whose RLS induced insomnia has caused her mental health issues as have the medication side affects.

We may be able to help you avoid the medication side effects if you are willing to post a note telling which meds. There are always alternative meds, but since many doctors are familiar with treating RLS, they don't understand the options. And if you can get the proper combination of meds, you should also be able to get the sleep that you need to resolve the issues caused by sleep deprivation.

[Rustsmith]

Sunday, March 6

Welcome to

Xgarn1570, who feels like Xgarn has aged from lack of sleep and therefore hates to go out because after sitting for short while Xgarn's legs start to move and then if they don't keep moving, they shoot out and has almost kicked people.

Are you getting some sort of treatment to manage your symptoms? Do you have any questions that we can help answer? All that you need to do is post a note and let us know what we can do to help.

[Polar Bear]

Monday 7 March 2022

Welcome today to

Marsha who has RLS/plmd. Diagnosed in a sleep study after years of struggling to sleep. Medications Ropinerol failed after raising the dose and experiencing 10lb weight gain without relief. Switched to Gabapentin and got relief for the last few months but feeling very depressed. Marsha would like to find alternative to drugs.

Not all drugs suit everyone and often we have to do a lot of trial and error. Did the Ropinerole help at first? Sometimes an alternative to drugs can help but generally speaking we end up having to take medication. Gabapentin does have a possible side effect of depression but not for everyone. Please make a post. Tell us about your medications, the dosages, and anything else you have tried, any over the counter medications. Please do post and let us do what we can to help.

[Rustsmith]

Tuesday, March 8

Welcome to

Rebsue, who has moderate RLS and is not able to find relief. She is hoping to learn from others who have it. She has tried different meds and devices but nothing helps much.

The two things that pop into my mind are that you might not actually have RLS or that you simply haven't tried a med at the proper dosage for your situation. If you are willing to post a note that lists the meds that you have tried, we may be able to steer you in the direction of one that will work.

[Polar Bear]

11 March 2022

Welcome today to

legs-be-still who has had RLS since being a teenager. Tried several meds from doctors but unfortunately, the restless legs would always come back worse within a few months. The lack of sleep was the worst! Could never function well at work, and was always tired. legs-be-still eventually found that taking a combination of supplements and sticking to a low oxalate has kept symptoms at bay and has been RLS free for about a year now without taking any meds.

When taking meds and then symptoms get worse it often points to augmentation and if this was the case and you then came off those meds, you did very well, it is not easy. We would love to hear your story and how you now manage to control your symptoms with supplements and diet. Please do post and tell us of your RLS journey.

[Rustsmith]

Friday, March 11

Welcome to

Burgoon, who is a 63 y.o. independent woman who works full-time in healthcare from her home. She loves to hike and travel. RLS affects her sleep and therefore her ability to be at the top of her game for work and play.

Are you taking meds for your RLS or have you had your ferritin level checked? There are lots of things that can be done if you are just starting out with ways to manage your symptoms, especially if sleep is your primary complaint. All you need to do is post a note to tell us a bit more about your current situation and to ask any questions that you have about managing your RLS.

[Rustsmith]

Saturday, March 12

Welcome to

Hginny, who can't sit for dinner, church services, car rides, or relax no matter time of day. She believes she inherited from her mother and can only can sleep a few hours at a time which affects her waking hours.

Is your RLS being treated by a doctor? Do you know what your ferritin level is? We may be able to offer some suggestions to regain control of your life, but we will need for you to post a note and tell us a bit more about your RLS.

[Rustsmith]

Tuesday, March 15

Welcome to

HODAR, who dreads going to sleep at night. The pain is almost unbearable and HODAR has been seconds away from taking a hammer to the legs.

We would love to be able to help you get around these problems at bedtime. If you don't find what you need in our discussions, please feel free to post a note with any questions that you have. We may even be able to offer some suggestions of things to discuss with your doctor if you feel comfortable telling us a bit about what you are currently doing to manage your RLS.

[Rustsmith]

Wednesday, March 16

Welcome to

mjrenee, who has been suffering with RLS for many years. She has tried many different therapies and would like to hear other peoples successes and failures. She would like support and to offer support to others.

All that you need to do is start the ball rolling by posting a note telling us a little bit about your successes and failures. Most of us would be very happy to participate in a discussion like that.

[Rustsmith]

Saturday, March 19

Welcome to

cmj034, who has severe RLS and has been working with a sleep specialist for over a year. It got better for a while, but is just unbearable at this point. cmj034 is looking for natural remedies to try first since the medication does not seem to work anymore.

The only "natural" remedies that helps are the iron supplements. The only time other things work is when they address a deficiency that is specific to you. If the medication that you were taking was pramipexole, ropinerole or rotigatine, then you may have experienced augmentation. If that is the case, you will need to change to a different class of medication. If your ferritin level is high enough (over 100), then the other choices are gabapentin, Horizant, Lyrica or the opioids. Most of us with severe and very severe RLS quickly end up taking a low dose opioid and do quite well. Addiction and tolerance are rarely an issue because we take such a low dose and the opioid works differently than it does for treating pain.

If you have any questions or would like to discuss your situation in detail, all you need to do is post a note or join one of our existing discussion threads.