DECEMBER 2022 - New Members

[Rustsmith]

Wednesday, December 14

Welcome to

Rayme, who has had RLS from 17 yrs as did her mother. She managed well on 4 to 6 hrs sleep for many years. Now age 64 and it's really bad, 3hrs of broken sleep, mostly from 5am on. She tried Pregabalin to 400mg, didn't work. She hasn't been on any other medication but now uses cannabis edibles but not every night as it stops being effective otherwise. Such a very strange syndrome!

Has your doctor checked your iron levels? Ferritin levels below 75 to 100 can cause RLS symptoms for many. Unfortunately, "normal" for the rest of the population is anything over 20, so doctors who are not familiar with RLS don't know this.

And please feel free to post a message with any questions that you have, we would love to be able to help you get more sleep.

[Rustsmith]

Thursday, December 15

Welcome

Sandymarkle, whose mother-in-law is dealing with RLS.

Please feel free to post a message with any question that you have.

[badnights]

Welcome today to our new member, bak, who may have had mild WED/RLS their entire life, but was diagnosed less than a year ago. Bak is 75, and the WED/RLS is bad enough to limit sleep to 2 hours at a time, 4 hours a day, and travelling is miserable. Bak wants to continue flying 2x yearly to visit a grandson, but worries it may not be possible if the condition doesn't improve.

Bak, you will be able to travel, we will help you find a way.

Can you start a Topic to tell us about yourself? What medications, if any, do you take? If you were prescribed a dopamine agonist (Mirapex, Requip, or even the Neupro patch), you may be experiencing augmentation - a worsening of the disease caused by the very medication that is supposed to help it. (Or worse, if you were prescribed Sinemet - your condition has almost certainly been augmented).

Whether or not you are on medication, you need to get a full iron panel including ferritin. If the ferritin number is below 100 (no matter that the lab might say it's normal if the number is 22), then you should supplement with iron, after ensuring that your doctor sees no harm in it. Iron levels in the brain seem to be low in people with WED/RLS, and often we can relieve symptoms just by taking iron, either intravenously or orally (intravenous tends to be more effective).

If you aren't on medication, an alpha-2delta ligand might be the best one to try first (e.g. gapapentin, pregabalin, Horizant). If you've already augmented, such a medication might not be effective enough on its own. Many of us are on combinations of medications, including very-low-dose opioids (addiction in our population is extremely rare).

Whatever you're taking, the trick to travelling is to take a fast-acting substance before the flight. This can be an immediate-release opioid (oxycodone, hydromorphone, codeine, Tramadol,hydrocodone) or Sinemet (aka levo-carbidopa). Yes the same Sinemet that causes augmentation. If you are not augmented, then Sinemet can be useful for one-offs like travelling, but it should never be taken daily, and it won't do you any good if you're augmented.

I hope you look around here and get some useful information, and be sure to tell us more about your situation so we can tailor our replies to help you better, Welcome and big hugs!

[Rustsmith]

Wednesday, December 21

Welcome to

CodeSailor, who has trouble sleeping at night. Sometimes the condition starts up in the evening while he is watching a movie or TV show. it sometimes interrupts interrupts his meditation.

Are you currently doing anything to address your RLS? Has your doctor checked your iron levels, especially ferritin? Do you have any questions about the various treatments for RLS? All you need to do is post a message and we can do our best to help.

[Rustsmith]

Wednesday, December 21

Welcome to

Maxx6689, who has suffered with RLS for about 20 years. When Maxx told the doctor that Maxx thought it was RLS, he said that I watch too much TV.
Maxx has staved it off for quite a few years with gabapentin and pramipexole. Now it is worse than ever and occurring during the day. Maxx gets no rest or sleep.

It sounds like your have augmented on pramipexole. If that is the case and your doctor doesn't know what augmentation is, you need to find a neurologist who understands augmentation and how to treat it. Do NOT allow your doctor to switch you to rotigatine (Requip) or the patch since these will not help the augmentation. If your doctor cannot/will not help, you may need to start calling neurologist offices in the area. Ask to speak with a nurse and then ask if the doctor is familiar with treating augmented RLS patients. The answer should be rather telling. And don't be surprised if you find a good neurologist if the first available appointment is several months away. Alternatively, check to see if there is an RLS Foundation Quality Care Clinic within a reasonable traveling distance from you. These clinics are all certified to be able to help patients like you. And if all that doesn't work, try calling the neurology department at the nearest major teaching hospital and ask to get an appointment with a doctor that specializes in movement disorders, like RLS.

[Polar Bear]

22 December 2022

Welcome to Julieod who is on medication which is not working anymore. Julieod can’t get to sleep for hours at a time and its ruining her life.

Often it is the sleep issue that will first drive an RLS sufferer to seek help. We would like to try and help you. If you make a post, joining a relevant thread, or even better, starting your own thread, you can provide your background RLS information. Tell us your RLS history, what medications that you have tried, prescribed and over the counter, what has worked or not. This will give us a start to consider where you may go from here.

[Rustsmith]

Saturday, December 24

Welcome to

coldestspot, who has had RLS for years. Cold has been on Ropinirole for 9 months and it isn’t working as well. Cold is hoping to learn from others with this condition.

If ropinerole worked well in the beginning and not now, you may be starting to augment. Augmentation is where a dopamine agonist that was working, stops working and starts to make things worse. You can learn more in our Augmentation forum.

And feel free to post a message with any questions that you have. We would love to answer anything that we can.

[Rustsmith]

Saturday, December 24

Welcome to

Omar kad, who has RLS and cannot sleep.it has affected his life and it and is very annoying.

If you have any questions about RLS or the proper treatment, just post a message telling us what you are currently doing to manage your symptoms so that we will know where to start with suggestions.

[Rustsmith]

Sunday, December 25

MERRY CHRISTMAS

and Welcome to

Rpcollier, who has been struggling on and off with RLS since stopping Xanax 18 mos ago. RP is feeling pretty desperate and depressed about it. RP's sleep is very disrupted and find that this condition is not understood by those around. RP has tried different meds in the past but the side effects are terrible. RP needs help.

To start with, here is a document that lists all of the possible treatments for RLS. Read through it, highlight somethng that you haven't tried and then share it with your doctor. https://www.mayoclinicproceedings.org/a ... 0/fulltext

After you have had a chance to explore our forums, if you have any questions, feel free to post them so that we can try to provide you with answers.

As for those around you, your best bet is to educate yourself and then become very vocal about educating them with facts such as 8-15% of the populations had RLS to some degree or another and you just are unfortunate enough to be on the high end of that group. And so forth. But also understand, that this is a common problem for "hidden" conditions that are not obvious. My wife has MS and during the early phase, even her doctors didn't understand and would accuse her of making up weird symptoms.

[Rustsmith]

Sunday, December 25

MERRY CHRISTMAS

Welcome to amross, who has been diagnosed with both RlS and PLMD . Since both of these conditions make sleeping a challenge, amross has been dealing with sleep deprivation, on and off, for the last twenty years. Although amross has learned to get by on very little sleep, its
hard to make plans when you're not sure how I will feel. amross hopes is to both learn from others what is helpful to them, and share with
others.

Over 85% of those of us with RLS also have PLMS. And although PLMS is more easily detected using a sleep study, far less research has been done. Some researchers are even beginning to believe that PLMS may be a variation of RLS that most of us have. Fortunately, the established treatments for RLS also seem to be effective for PLMS.

We would love to hear about your experiences and try to answer any questions that you have. All that you need to do is post a message in the appropriate forum and then wait to hear from us.

[Rustsmith]

Tuesday, December 27

Welcome to

Liliyanelson, who is asking for my husband. He’s 43 and has been experiencing RLS for the past 3 years. He’s generally dealt with it but it is now becoming more intrusive, mostly affecting his ability to sleep and generally just dealing with a constant low level pain.

The first complaint that brings most RLS patients to the doctor's office is the problem with sleep.Unfortunately, many doctors are clueless when it comes to treating RLS or else their knowledge is 20 yrs out of date. Here is a link to the latest recommendations of the RLS experts. Read through it, highlight a couple of sections that are relevant and then have him hand it to his doctor while asking "What do you think about this?" Do not say "I found this on the internet" since that is am immediate turn-off for almost all doctors.

https://www.mayoclinicproceedings.org/a ... 0/fulltext

[Rustsmith]

Wednesday, December 28

Welcome to

donnaannastasi, who is a 71 year old woman with severe primary RLS. She has had this malady since she was 16 or 17. 25 years ago they tried Mirapex and it was a miracle drug until 6 or 7 years ago. She has since, been on a roller coaster of meds that sometimes help and sometimes don't. She is miserable and tired.

The only meds that are likely to help you at this point are the opioids. Unfortunately, finding a doctor that understands this and is willing to prescribe them can be a major problem. Supplemental iron helps some, but not all and the anti-seizure meds (gabapentin, Horizant and Lyrica) also do not help everyone. If you have any questions, just post a note and we will try to answer them for you.

[Rustsmith]

Wednesday, December 28

Welcome to

Denise Spining, who has been dealing with RLS severely for the past 8 years. She truly believes it's hereditary. Her grandmother had it, her mother and her aunt. It is affecting her life more severely everyday. She was prescribed ropinerole, which she has been taking for 3 years. Now it is no longer working. Please help as she is feeling very desperate.

You are very likely going through augmentation on the ropinerole, which is where the med stops helping and starts making your RLS worse. Many doctors are not familiar with augmentation, so you need to learn as much as you can and hopefully you have a doctor that will be willing to learn from you. First off, you should read through our forum on Augmentation. Then, feel free to post a message asking any questions that you have. When you do that, it would be very helpful if you would be willing to tell us what dose you are currently taking.

[Polar Bear]

Thursday 29th December 2022

Welcome today to

Hooper whose RLS has gotten more severe. Hooper's 32 yr old daughter and 6 yr old granddaughter also suffer from this, Hooper was happy to see a website/bb devoted to RLS and hopes to share tips, receive tips and in general commiserate with others.

We are happy that you found us but sorry that you need us. If you look in the Special Populations forum there should be information regarding children and RLS. There can be a genetic link with RLS and it can also just appear from nowhere.
Please read all you can and feel free to ask questions. Giving a back history will always give us a better starting point to try and help.

[Rustsmith]

Friday, December 30

Welcome to

libraryannie, who has been taking Mirapex in various forms and dosages for over 20 years. She is looking for the newest ideas on treating RLS.

This document has the latest information on the treatment of RLS.
https://www.mayoclinicproceedings.org/a ... 0/fulltext

And if you have any questions, feel free to post a message or join in any of our existing discussions.