OCTOBER 2022 New Members

[Rustsmith]

Friday, October 14

Welcome to

RLS113, who is looking for resources and being able to communicate with others that have this horrible syndrome

For resources, start with the General Interest Forum thread on research publications. Go to the end for the latest posts. And feel free to post a message with any questions or comments that you have.

[Rustsmith]

Saturday, October 15

Welcome to

Beni, who has with Celiac disease. About six months ago Beni also got RLS. Long trips are very difficult and so Beni is interested in learning from the experience and treatments of others.

With Celiac Disease, there is a good chance that you ferritin levels are less than the minimum 75 level that is recommended for RLS patients (normal for others is anything over 20, so make certain you know your number and don't accept a report of "normal"). That means that iron therapy might be very effective for you. With oral iron supplements you should take a pill that has 65 iron equivalents (often 365mg of iron sulfate) along with vitamin C and this should be on an empty stomach. This takes several months to help. If your iron levels are very low and IF you can find a doctor who will cooperate, an iron IV treatment can be effective in a few weeks. Either way, you need to learn as much as you can about RLS since your doctor probably is not that familiar with it. This document is a great place to start and a great document to share with your doctor. https://www.mayoclinicproceedings.org/a ... 0/fulltext

[Rustsmith]

Saturday, October 15

Welcome to

Johnsmom0924, whose RLS is dominating her nights and her days, as well. Her doctor has prescribed everything possible but meds are not effective. She needs a support group to help her through this.

We will be happy to provide whatever support you need. Often when your sort of situation arises, it is either because you do not really have RLS or it is because your doctor isn't familiar with RLS and is either prescribing the wrong sorts of meds or hasn't identified a med for a different condition that is aggravating the RLS (often this is an anti-depressant prescribed to treat the insomnia, but which aggravates RLS). If you post a note that tells us a bit more about what your doctor has prescribed for you, we may be able to help straighten things out for you.

[Rustsmith]

Sunday, October 16

Welcome to

bonocon, who has many ups and downs (no pun intended) - many, many lost nights of sleep; many failed treatment tries with many poorly informed physicians, Rxs that cause exacerbations and augmentations instead of bringing relief; off-label Rxs that work, but are not agreeable to poorly informed physicians, or that "burn out" after some number of years.

Perhaps we can provide some suggestions that will help. We can definitely provide info to help educate those poorly informed physicians (assuming that they are willing to learn, which many are not). All you need to do is post a note and let us know where to start.

[Rustsmith]

Sunday, October 26

Welcome to

peripheraldude, who didnt realize he had RLS as it slowly crept into his life apprx 25 years ago. He has been on medication for 15 years. He wants to be in a group or learn if there are research opportunities in his state. He would consider participating in trials. He would like to know what options he has besides pramipexole.

For info about clinical trials, check the website clinicaltrials.gov or the RLS Foundation's website www.rls.org

As for alternatives to pramipexole, check the latest recommendations for treating RLS at https://www.mayoclinicproceedings.org/a ... 0/fulltext. You will find that pramipexole is well down the list of options for treating RLS these days even though most doctors do not know this.

And please feel free to post a message with any questions that you have.

[Polar Bear]

Tuesday 18 October 2022

Welcome to:

longtimealaskan who has severe RLS and gets about 1 hour of sleep daily, spends much waking time on a treadmill, the doctor doesn't respond. Quality of life? Probably good if one is a zombie. Looking for something that might help.

Please do post and tell us your current treatment, your medications and dosages. What you have tried yourself to ease your symptoms. Given some information we would hope to be able to help you.

[Polar Bear]

18 October 2022

Welcome today to

adrianna_leigh who like to stay up to date. There is a lot of information throughout the discussion board. The Just Joined Forum is a good place to start. Please feel free to ask any questions.

[Rustsmith]

Wednesday, October 18

Welcome to

chicken wings, who has RLS that is so bad that she does not sleep more than two hours at a time. Her legs have a burning sensation like the worst sunburn you can imagine. She is on .25 pramipexole but it does not seem to be doing very much. The doctors tell her its in her head that its due to depression and severe anxiety. When She found this site, she just sat here and cried - finally she realized its NOT in her head, that is real and other people are suffering like she is. This site is giving her hope.

Ironically, the source of RLS is in your head since it is caused by low iron in a part of the brain. Obviously the doctors that your are seeing are not familiar with RLS and are taking the old approach of "if you don't know, blame the patient". So, you either need to find a new doctor that is more compassionate and interested or else you need to educate the current ones. You also need to find a new medication other than pramipexole. We can help with either approach, all you need to do is post a message so that we know which way you want to go.

[Rustsmith]

Friday, October 21

Welcome to

KJune, who has had RLS for many years with nothing but worsening of symptoms. It is olyy getting worse with age. KJune is hoping to find answers.

Hopefully we can provide answers to your questions. All you need to do is post a note and ask.

[Rustsmith]

Friday, October 21

Welcome to

meyer, who is frustrated with the MD's management of meyer's RLS and is trying to do more information gathering before their next appointment.
meyer is on Gabapentin and Requip and worries about augmentation. meyer has been on Requip for 10 yrs.

The best place to start for information that you can share with your doctor (as well as learn about options yourself) is this document https://www.mayoclinicproceedings.org/a ... 0/fulltext

And feel free to post a message with any questions that you have.

[Rustsmith]

Saturday, October 22

Welcome to

Guy@108. whose RLS makes it difficult to travel on planes, buses, etc. and difficult to sleep.

Are you doing anything to treat your RLS? There are ways to manage the symptoms depending upon the severity of your RLS. If you would like to hear more, all you need to do is post a note telling us a bit more about your RLS symptoms and what you are currently doing to manage them.

[Rustsmith]

Saturday, October 22

Welcome to

longtimealaskan1, who asks "What life with RLS? Alaskan didn't know it was possible to have a life when one has severe RLS.

It is possible, but it requires the support of a doctor who understands RLS or is willing to learn. A good place to start is with the following document. Read it and then share it with your doctor. We normally recommend highlighting a few sections before sharing it so that your doctor doesn't have to read it while you wait. https://www.mayoclinicproceedings.org/a ... 0/fulltext

And feel free to ask any questions that you have. Many of us have severe or very severe RLS, yet manage to life a altered, but fairly normal life.

[Rustsmith]

Monday, October 24

Welcome to

Glb128, who started having RLS a couple months ago and has changed life for the worse. The minute Glb goes to bed it begins. It can take hours for GLB to get to sleep. So, Glb islooking for some good suggestions via the board.

Your best bet is to talk to your doctor to get some help, but understand that most doctors are not familiar with the diagnosis or treatment of RLS. Ask to have blood work done to check your iron levels, specifically ferritin, and then ask for the results. Don't accept "normal" since normal for others is too low for those of us with RLS. And if your doctor suggests Mirapex(pramipexole) or Requip(ropinerole), ask if you can start with gabapentin because the side effects of the first two meds (both dopamine agonists) are too severe. And to educate yourself, read through this document and consider sharing it with your doctor. https://www.mayoclinicproceedings.org/a ... 0/fulltext

[Rustsmith]

Monday, October 24

Welcome to

rockyspad, whose RLS causes lack of sleep, and the drug side effects have disrupted his life. He is have difficulty sitting.

It sounds like you may be experiencing augmentation from a dopamine agonist. If you take a look through our forum on augmentation, you can get an idea of what comes next. Or, feel free to post a note and tell us a bit more so that we can try to help you out.

[Rustsmith]

Monday, October 24

Welcome to

Evelyn, who wants to share her RLS experience and learn about successful treatments.

We would be happy to hear about your experiences as well as to share the treatments that work (as well as those that don't). All that you need to do to start the discussion is to post a message for us.