OCTOBER 2022 New Members

[Polar Bear]

3rd October 2022

Welcome to

iris - who has suffered from daily RLS for decades (up to 7 hr/night). iris sees a neurologist and has tried numerous medications with mixed results and troublesome side effects. iris has found that a gluten free diet improved RLS symptoms significantly and minimizing caffeine and dairy also helps. iris seeking information, support, and suggestions.

Many sufferers find that a certain diet can help their symptoms. Please post and tell us about your current treatment regime. Have you had your Ferritin Serum checked, this is important, it should be up around 100 and not the 20 which is considered adequate for a non sufferers.

[Polar Bear]

4th October 2022

Welcome today to

ellenalbert who has had RLS for 46 years, suffered from poor sleep, been on multiple meds through the years & has had to significantly pull in the margins of her life. Presently she is finding respectable control of symptoms except for consistently decent sleep with lowest dose of Mirapex, Gabapentin and Clonazepam. She has not had knowledgable doctors and recently had an iron infusion. I'd like to know more about the follow up for the infusion.

Its great that you are at present having reasonable symptoms control. Please do post with details of your rls management. This is the best way to hear from others who have already had iron infusions.

[Rustsmith]

Tuesday, October 4

Welcome to

bidc, who has had RLS for at least 15 years. Recently bidc severely augmented on ropinirole and has since weaned off along with a drug holiday. bidc is seeking info and insights for the path forward to start sleeping again.

You can find a lot of information about augmentation recovery in our Augmentation forum. It takes about a week to begin sleeping again if you use the drug holiday method. You gradually get more sleep over the next three weeks. After that, do NOT let your doctor switch you to one of the other dopamine agonist meds (pramipexole, the rotigatine patch or carbidopa/levodopa) because you will just augmented again very quickly. The real question is what med you will need to use to regain control of your RLS. The first thing to try (assuming your ferritin levels are over 75) would be gabapentin or Lyrica. That helps about 65% of us. The rest of us have to rely upon daily low dose opioids that we will be taking for the rest of our lives.

[Rustsmith]

Tuesday, October 4

Welcome to

conger, who has had RLS for about 30 years and has taken various medications over the years starting with carbidopa/Levadopa and progressing to methadone. conger had to get off the methadone because it required a higher dose than conger could handle. conger could no longer drive safely and was in a fog. conger then went on Pramipexole, augmented, and is currently in the process of getting off the pramipexole. conger has severe symptoms every day.

There are two approaches that are used for situations like yours. One of the moderators has worked out a treatment program with your doctor where she switches between methadone and pramipexole. She takes one of them for a few days then switches to the other and then back. This prevents dose escalation on the methadone and augmentation on the pramipexole. The other approach that seems to be gaining acceptance is the use of Suboxone. Suboxone is a combination of an opioid (buprenorphine) and naloxone (the drug they give for opioid overdose). Suboxone is also a Sch III med, so it doesn't involve as much red tape for getting prescriptions.

[Rustsmith]

Wednesday, October 5

Welcome to

Linmoogcath, who has experiences RLS since childhood and increased in severity in early thirties with pregnancies. Now age 68, symptoms are every day and night without exception. GP prescribed Ropinirole and Mirapex (generic). She have been on Mirapex for about 35 years and augmented. Neurologist prescribed Carbidopa-Levodopa 10/100 1 month ago. No relief at all. Averaging 1 1/2 to 3 hours sleep each night. Increased dose to 20/100, still no relief. Sent referral to movement specialist. She cannot get an appointment until February next year. She went back on Pramipexole two nights ago out of desperation. Now slept with no RLS, but nausea, vomiting and headache. Please HELP!

It sounds like your GP and neurologist are not familiar with the proper treatment of RLS since they only seem to know about dopamine type meds and carbidopa/levodopa is not a recommended treatment for RLS. Did either one check your iron levels to see if your ferritin was over 75 (don't accept a report of "normal" since that is anything over 20). The real problem is that after augmenting, you probably need to be taking a low dose opioid but this scares doctors so most would rather see you suffer than prescribe this very effective medication. But, if you think that one of them would be willing to learn, you might try sharing this document with them that was written to educate doctors in the proper treatment of RLS. https://www.mayoclinicproceedings.org/a ... 0/fulltext

[Rustsmith]

Thursday, October 6

Welcome to

Cjonas00, whose RLS feels debilitating some days. Cjonas needs some support.

We would be happy to provide whatever support that we can provide. All that you need to do is to post a note and tell us what we can do to help.

[Rustsmith]

Friday, October 7

Welcome to

Kathryn60, who used to be active on this board and wanted to come back.

Welcome back.

[Rustsmith]

Sunday, October 9

Welcome to

Brooks2202, who has had RLS for over 12 years and has had issues getting Dr's to understand the severity of the issue. Brooks has experienced augmentation and has had many issues over the years trying to get Dr's to understand the severity of the problem and the augmentation issues caused by long term usage of Pramipexole. RLS has impacted every facet of Brooks's life health, relationships and career.

If only we could get doctors to experience RLS for just one day, then maybe they wouldn't ignore the issues that we report to them. They don't understand RLS because they were not taught about it in school, so many simply assume it is a minor inconvenience to us. If you need information about augmentation, take a look through our Augmentation form or just post a message asking whatever questions that you have.

[Rustsmith]

Sunday, October 9

Welcome to

DrBillinsley1, who has had RLS for 40 years. It occurs nightly & is visible to DrBillinsley's partner as well as disrupts sleep. With the recent creation of drug monitoring programs, DrBillingsley's only effective medication is frequently questioned. DrBillingsley is elderly and has been satisfied with the current medication. With this site, DrBillingsley hopes to get more expert help, updated information, and support.

You can find a great deal of information in our General Topics fourm's entry on Published Research. Go to the end to get the latest entries. But start with this publication for the latest recommendations for treating RLS. https://www.mayoclinicproceedings.org/a ... 0/fulltext

[Rustsmith]

Monday, October 10

Welcome to

JimmysLegs, who is using Suboxone and is getting depressed. So want to see how people deal with it.

I use methadone and found that it was causing my hormone (testosterone) levels to drop below normal. When I started treating the hormone deficiency, the depression that the methadone was causing went away. Maybe you have something similar going on.

[Rustsmith]

Tuesday, October 11

Welcome to

avaneendra, who has RLS symptoms and is looking for info on relieving the symptoms.

Here is a link to the latest treatment info for RLS. https://www.mayoclinicproceedings.org/a ... 0/fulltext

If you have any questions, please feel free to post a note and we will try to answer them.

[Rustsmith]

Tuesday, October 11

Welcome to

russvictor, who has bad RLS. Has been living with it for years and his only real relief is by using Kratom.

Many of us use kratom for relief because of the problems with getting opioid prescriptions. Please feel free to post a note with any questions that you have or simply join in one of our existing discussion threads.

[Rustsmith]

Tuesday, October 11

Welcome to

jblackburn, who has had RLS for 2 years and is currently on 4MG of ropinirole.

That is the max recommended dose of ropinerole for RLS and could be an indication that you are starting to augment on it. Most doctors are not familiar with augmentation, so you will need to educate yourself and teach your doctor (if (s)he is willing to listen). Take a look through our forum on Augmentation and feel free to post a note with any questions or comments that you have.

[Rustsmith]

Thursday, October 13

Welcome to

e.eaken, whose mother died suddenly & immediately after this stressful event E felt the oddest sensation in the legs. E became even more depressed by this new strange condition. Doctors have only helped a little bit; a neurologist said to find a specialist. E researched the web, and found the RLS Foundation. Mentally, E is always challenged to keep the chin up and keep learning and sharing. E is doing better w/out caffeine and sugar and is determined to stay off any RLS med as long as possible.

Since it doesn't sound like you have been formally diagnosed with RLS, you might want to check out this website, which has the official questions that a doctor has to ask to diagnose RLS. http://irlssg.org/diagnostic-criteria It is unfortunate, but even many "specialist" neurologists are not familiar with RLS. As for non-medicine based treatments, take a look through our Physical Treatments and non-prescription medications forums. Also, many find that soaking the legs in very hot water (or cold water) can temporarily shut down the need to move.

And feel free to post a message with any questions that you have. Answering questions is a large part of why we are here.

[Rustsmith]

Friday, October 14

Welcome to

Bill Field, who has been diagnosed with PLMD. He wants to learn all he can about how to manage PLMD and it is conceivable that he might share valuable information with other members.

There is very little information specific to the treatment of PLMD even though it is more easily diagnosed and observed than RLS. What information that is out there says that it should be treated as if it were RLS. In fact, some of the new genetic research seems to indicate that PLMD is a mild subset of RLS. So, all of the treatments that you see described here (iron therapy, gabapentin/Lyrica and if those don't work, the dopamine agonists) are all possible treatments for PLMD.

If you have any questions, feel free to post a note and ask away. We will try to answer them for you.