JUNE 2023 - New Members

[Rustsmith]

Saturday, June 3

Welcome to

Katkirsch, who is joining to learn about RLS to learn and to help kat''s 88 yr old mother who has severe augmentation RLS, day and night. She has been on several prescription and over the counter meds and supplements. She is depressed, hopeless and feels helpless currently.

There are several ways to manage augmentation, but we will need a few details to be more specific. You can read through our forum on augmentation, or you can post a note telling us what her current dose and medication are as well as the OTC meds and supplements that she has tried so that we can have an idea of where to start with our suggestions.

[Rustsmith]

Tuesday, June 6

Welcome to

Legrester, whose RLS caused disrupted sleep and fatigue. Legrester is under the cae of a hospital consultant but not getting better on dopamine agonists.

If dopamine agonists never helped, then your problem may be an RLS mimic and not actually RLS. Years ago, a diagnostic trick that some doctors used was to provide a single dose of a dopamine med and then tell the patient to come back tomorrow. If the patient came back raving about a miracle drug, it was RLS. If not, then they continued to look further. If you have any questions, feel free to post a message and we will try to provide whatever help we can.

[Rustsmith]

Tuesday, June 6

Welcome to

Feisty, who is becoming increasingly affected by RLS as she gets older. She has spent a lot of money trying alternative methods and it scares her whether or not they're going to prove successful.

Unfortunately, most of the non-pharmaceutical treatments for RLS are useless. You will find a couple in our Physical Treatments forum that help, with soaking in very hot water being the most common and taking iron supplements (for months). Some people also improve by changing their diet, but as you observed, RLS tends to become more severe with age and therefore daily medications and regular doctor visits may be in your future. Feel free to post any questions or comments that you have. That is why we are here.

[Polar Bear]

Wednesday 7th June 2023

Welcome today to

Grammy_19 who has had RLS for over 20 years and people around don't understand. Grammy_19 has a great Dr but nothing seems to be helping anymore either augmenting or allergic. Just wanting to get some support from people who are also going through this

Having a doctor who is willing to support you is a blessing as long as your doctor is well experienced and up to date in he treatment of RLS. Please read through the Augmentation Forum and see if this feels familiar to you. Are you taking a DA such as ropinerole or mirapex. Please make a post detailing your medications and dosages, those that have helped/not helped, or helped at one time. We can then suggest what may help you.

[Polar Bear]

Wednesday 7th June 2023

Welcome today to

Celloguy2 who has had RLS for serveral years. The greatest issue is the lack of sleep, and this leads to fatigue during the day, generally feeling miserable, and being quite impatient. In addition, Celloguy2 has sleep apnea, atrial fibrillation and has just had one knee replacement 3 months ago. One concern is the potential negative interaction of the medications.

If you will make a post and provide details of your RLS history and treatments, your medications and dosages, we will do our best to suggest how you may improve your situation.

[Rustsmith]

Wednesday, June 7

Welcome to

Celloguy2, who has had RLS for serveral years. His greatest issue is the lack of sleep, and this leads to fatigue during the day, generally feeling misearable and being quite impatient. In addition, he has sleep apnea, atrial fibrillation and had a knee replacement 3 months ago. One concern is the potential negative interaction of the medications.

Most of the RLS meds do not have interaction issues, but they all have potential side effects that can be life altering. If you have any questions that you would like to pose, just post a message and we will try to address them for you.

[Rustsmith]

Wednesday, June 7

Welcome to

leg up, who needs help with RLS at night. He can't stay asleep and feels exhausted.

There are many ways to manage RLS so that you can get decent sleep at night. Have you discussed this with your doctor? Have you had your iron levels (especially ferritin) tested? Are you currently taking any medication for it? If you will provide us some more details in a post, we can probably help you out.

[Rustsmith]

Thursday, June 8

Welcome to

Sleepdeprived, whose RLS has recently been ruining sleepdeprived's life. Never has it been so bad. Just horrible.

Are you familiar with the use of soaking in hot water to get temporary relief? Have you discussed this with your doctor and had recent blood work to check your ferritin level? Are you taking any meds (including ones that aggravate RLS like anti-histamines and anti-depressants)? We would be happy to provide you with information if you will just tell us a bit more about yourself.

[Rustsmith]

Saturday, June 10

Welcome to

Chappyj23, who was recently diagnosed with RLS. Some nights it keeps him awake, some nights it just a mild “itch” he can’t scratch, and fortunately, some nights he doesn’t experience it at all. His symptoms are relatively new, so he is not really sure how this is affecting him yet.

Have you asked your doctor about this? Sometimes, treatment in the early stages can be as simple as running blood tests to check iron levels (you need to ask specifically for ferritin levels). If your ferritin is below 100, then an oral iron supplement along with vitamin C is often enough, but it can take a few weeks to get started. If you take oral iron, you need to take a dose that has 65 mg equivalents of iron per day (this is 325mg of iron sulfate, the least expensive and most common iron supplement). And if you have any questions, feel free to post a message. That is why we are here.

[Rustsmith]

Sunday, June 11

Welcome to

SleeplessinSeattle, who ever since a child has been moving feet at night to sleep. Now over 60 Sleepless still suffers day and night with RLS. So many torturous and sleepless nights. Sleepless seems to get best sleep around 5am - 11am or later, sometimes as late as 3pm. Now very sleepy in the daytime -and falling asleep at work!

Is your RLS being treated by a doctor? If so, can you tell us what you are taking? Some treatments work for a while and then start making RLS worse. Please post a note and tell us more.

[Rustsmith]

Tuesday, June 13

Welcome to

Patty70, who is often exhausted in the morning. She is taking iron although it is within normal limits so she is concerned about it getting too high and having harmful side effects.

Although you should have your doctor check your iron levels, especially ferritin, it takes many months for it to get high enough for concern and some of the experts say that you cannot get that high on an oral iron supplement. I did get there, but it took many years and even then my doctor wasn't concerned. If you have any other questions, feel free to post them so that we can help you out.

[Polar Bear]

Wednesday 14 June 2023

Welcome today to

Rebecca12* who has suffered a lifetime with RLS and is interested in learning from others with RLS and sharing her experience.

If you read through the Forums you will find all of us are sufferers who want to share and to learn. Please ask any questions that come to mind and we will do our best to help.

[Rustsmith]

Wednesday, June 14

Welcome to

Jdfisherman, who has had RLS for over 20 plus years. It significantly affects sleep, intimacy and social activities. Jdfisherman has used prescription meds and exercise(stationary bike) to manage symptoms

Hopefully the meds and bike continue to manage your symptoms. If you have any questions, feel free to post a message so that we can try to help you out.

[Rustsmith]

Saturday, June 17

Welcome to

BarnGir1, who is a 74 year old female with a lifetime of RLS. She did not know what it was until about 30 years old when it was diagnosed in conjunction with diagnosis of Chronic Fatigue Syndrome. It did not cause problems until she was about 70 years old when it became so bad that she could not sleep. Her neurologist put her on ropinerole but in the past 2 months she has noticed that jerking starts at night even though she has taken the same medicine for about 4 years now. She is trying to learn about augmentation and how to find another way to manage RLS if she has to quit Requip completely.

You can find a great deal if information about augmentation by reading the messages in our Augmentation forum. As for another way to manage your RLS, take a look through this document and then share it with your neurologist https://www.mayoclinicproceedings.org/a ... 0/fulltext. This second document may also be helpful. Refractory RLS describes patients who have been through augmentation. https://www.mayoclinicproceedings.org/a ... X/fulltext. Both of these documents were written by some of the leading RLS experts in the US.

Unfortunately, most doctors are not familiar with treating augmentation, so you may need to educate your doctor on the alternatives. If you can get your doctor to prescribe an opioid medication, that will ease the problems with getting off of the Requip. If not, you have a difficult couple of weeks ahead of you.

Finally, if your doctor doesn't seem to know what to do and isn't willing to learn, many of us have had to travel to get help from one of the experts. The Foundation's Quality Care Clinics are all well versed in helping people in your situation. The only issue can be the time required to get a new patient appointment.

And please feel free to post a message with any questions or comments that you have. Most of us have been through augmentation, so we should be able to answer any questions that you have.

[Polar Bear]

18th June 2023

Welcome today to

Purpleamaru who has had restless legs for over 20 yrs.and and the last year it has gotten worse. Purpleamaru is a health practitioner and has explored all areas to try and remedy the issue, and most things work for awhile then stop working. Purpleamaru is at a loss and would like to avoid meds. it has caused too many yrs of insomnia and is very debilitating.

When you say you would like to avoid meds, have you ever tried prescription meds. Over the counter 'remedies' rarely work and if they do it is often a placebo effect. Please make a post in the Just Joined Forum providing details of any treatment, meds, dosages. Tell us what has or has not worked. This will give us a starting point for discussion to try and help you.