JULY 2024 NEW MEMBERS

[Rustsmith]

Wednesday, July 24

Welcome to

Michou, who is desperate to look for any solutions as he is a sufferer of over 50 years and it is getting worse. He is at the end of his tether.

We should be able to provide you with some guidance that you can discuss with your doctor. However, before we can do that, we need an idea of what you are currently doing (and have done in the past) to manage your RLS. For example, has your doctor checked your serum iron levels and do you know your ferritin number (not just a report of normal but the actual number)? Also are you currently taking a dopamine agonist such as Mirapex or Requip? Those meds could explain why your RLS is getting more severe after all this time other than the simple fact that we are all getting older.

[Rustsmith]

Wednesday, July 24

Welcome to

Fdlrfam, who has suffered with RLS for 20 years and wants to be empowered with the knowledge needed to control this terrible disease.

We would be happy to provide as much knowledge of treating RLS as possible. All that you need to do is post a message with any questions that you have. In the meantime, you can also read through the document that the link in my signature points to. It was prepared by many of the leading RLS experts specifically to educate GP doctors on how to manage the treatment of RLS in the patients.

[Rustsmith]

Thursday, July 25

Welcome to

Jules55, who has suffered from RLS for more than 40 years (age 68) and has been treated by neurologists for 25+ years. Mirapex has been the primary medication until 10/23, when augmentation became unbearable and the MD recommended introducing gabapentin (now 900mg) while titrating down from 3.5mg nightly dose of Mirapex. Currently down to 1.0 mg Mirapex and trying to reduce dosage again to eliminate drug completely. Symptoms have worsened with decrease in Mirapex and occur earlier (evening instead of after 9 pm). Alcohol exacerbates symptoms and is usually avoided. Jules is concerned that gabapentin alone will not adequately manage severe RLS. While no history of drug/alcohol abuse, Jules refuses opioids due to two family members with history of opioid abuse. RLS affects all aspects of life at 6 pm due to worsening PLMs. Jules will start with new neurologist (Cornell Weill medical ctr) in early Sept. Jules appreciates reading of others' experiences.

As you are learning, gabapentin alone is not sufficient to cover the withdrawal symptoms from dopamine agonists. Doctors simply refuse to accept that the physical dependence of high doses of dopamine is worse than being addicted to opioids.

To go from 1mg of Mirapex down to zero, there are only two options. Either accept that you will need to take an opioid at least in the short term or suffer through withdrawal. I have personally been through both dopamine and opioid withdrawal and dopamine is far worse. Your RLS will get even worse as you taper from 1mg down to 0.25 and then gets insane from 0.25 down to zero. That last drop to zero will mean absolutely no sleep for at least a week (no naps possible) and you will be on your feet pacing 24hrs/day. However, with even a minimal dose of an opioid (usually methadone but any will work), you can live a fairly normal life during that week.

As for opioids, please give some thought to the use of Suboxone. It is a new opioid (buprenorphine) combined with nalaxone. The RLS experts often use this for patients who are susceptible to addiction (former gamblers, alcoholics and illegal drug users). The naloxone blocks the opioid pleasure receptors (not that I have heard of RLS patients that feel any pleasure from their low dose of opioid other than the wonderful relief of symptoms.

Finally, feel free to post a message asking any questions that you have. Almost all of us have been in a position where you are today and are very happy to support those who are going through the process of dopamine agonist withdrawal.

[Rustsmith]

Thursday, July 25

Welcome to

Rfk213, who is 83. Doctors look at him and say it’s dementia. It’s been months of not sleeping and his doctor only cares about diagnosing him with Alzheimer’s. Don’t they realize the impact of lack of sleep on cognition? They tried to give him sleeping pills that made him insane and now he is on an RLS med. He now gets an hour or so sleep but has to wait until it builds a little as he doesn’t want to jump the dose up too quickly. It has really impacted his wife’s sleep too and she has fallen a couple of times and now has a concussion. He can’t drive anymore and that’s so depressing.

Next time you see your doctor, ask to have your serum ferritin level checked. It is a measure of the body's iron reserves and can have a big impact on RLS. If your ferritin number is below 100, taking an iron supplement may also help. Unfortunately, even that takes time and by-the-way, there isn't enough iron in a daily multivitamin to help.

And if you have any questions, feel free to post a message. We are all here to try to help each other, so don't hesitate to ask.

[Polar Bear]

Friday 26 July 2024

Welcome today to

Kawigma who feels like he/she is losing a grip on sanity half the time, the medications are having effects that are as bad as the RLS and Kawigma is at wits end.

If you take a look at the link in my signature this document, which is written by esteemed RLS experts, It has been prepared to guide doctors through the treatment of RLS but is written so that us sufferers can understand it also. Education is power and it helps to be able to discuss with your doctor from an informed point of view.

What is your Ferritin Serum level, it should be up around 100 and not just 'normal'. Make sure to find out what your number is.
Have you taken any of the Dopamine Agonists such as Ropinerole or Pramipexole just in case you might be augmenting.

If you make a post and give us details of your RLS treatment, what medications have or have not worked, we will try to help.

[Polar Bear]

Saturday 27 July 2024

Welcome today to

spike who has PLMD and it has impacted his sleep for 10 years. The lack of quality sleep, 3-4 hours per night has resulted in chronic tiredness.
Recently he has been diagnosed with moderate sleep apnea which makes matters worse. Medications have worked for short term but then stop working and the side effects are worse than the symptoms.spike is seekling ways to improve his quality of sleep.

There are similarities between PLMD and RLS. Generally speaking, RLS gets worse in the evening and physical activity can provide some relief. RLS happens when a person is awake. PLMDs generally occur more during sleep. A high percentage of RLS sufferers will also suffer from PLMDs. Not so much the other way around. Have you also been diagnosed with RLS, do you have any RLS symptoms.

You can use the search icon at the top of a page to try and find Periodic Limb Movement Disorder, however the search system is very inefficient and will throw any hits it finds, leaving you to trawl through them. Not a many members post a lot about PLMDs. If you wish to ask questions please make a post and provide information about your medication and what has and has not worked.

[Rustsmith]

Saturday, July 27

Welcome to

bobgates2, whose life has been taken away from him. He cannot get to sleep as he anticipates the horror of awakening with leg torture. He cannot make plans the day after because he simply cannot function without sleep when this occurs in the middle of the night . He has become clinically depressed.

Is your RLS being treated by a doctor? Have you had a blood test to check your ferritin levels? If you are clinically depressed, are you taking an anti-depressant which often makes RLS worse? There are so many things that we can share with you if you are willing to post a message that tells us about what you are doing to manage your RLS.

[Polar Bear]

Sunday 28 July 2024

Welcome today to

Mpick who wants to learn more about how to deal with rls.

Read through, and see what you can relate to. Knowledge is power. It helps you to discuss various symptoms and treatments.The document linked in my signature is very informative. If you have any questions please do ask. Providing some details of your medications/treatments will help us to try and help you.

[Rustsmith]

Sunday, July 28

Welcome to

teressagermain, who is in augmentation. The more Ropinerole she takes, the worse it gets. She has to take 3 mg and go to bed so early because she is exhausted and can’t sit. She is 70 and has had RLS since a kid. Her Mom, Dad and Brother had it. She cannot find a doctor that knows anything about it. She gets up at 4 am just to sit for awhile before it starts.

You need to get off of ropinerole, but at the dose that you are currently taking, you need to do it under the guidance of a doctor who understands how to treat augmentation. If you live anyplace even remotely close to a RLS Quality Care Clinic, call and make an appointment (but that could take up to six months). The Foundation also has a great deal of info on augmentation and you can learn more by reading some of the posts in our Augmentation forum. Finally, you can learn more by reading the document that the link in my signature points to.

If none of this sounds feasible, please post a note so that we can start a discussion with you on what you need to do to proceed. Most of us have been through augmentation and will be thrilled to help you out with advice.

[Polar Bear]

Monday 29 July 2024

Welcome today to

egunn who has developed severe RLS and is looking for support and suggestions on how to manage it.

If your RLS is severe then I will assume that you are being treated by your doctor. Has your doctor checked your Ferritin Serum and do you know the level you have. If not, then ask for this test to be done as it isn't normally done in a normal blood panel. You will want your level to be about 100 and don't accept being told that your result is 'normal'. Normal can be anything from 20+.
There is a lot of information here. Also helpful should be the document linked in my signature which has been prepared by a team of RLS experts for the guidance of RLS treatment.
If you have any questions please make a post, providing details of how your RLS has been managed and we will do our best to help you.

[Polar Bear]

Tuesday 30 July 2024

Welcome today to

Buddy whose RLS appeared after a head injury 5 years ago. Since then. RLS appears almost daily at a severe status. Buddy is absolutely dreading an upcoming vacation travel experiance.

Travel can be a real challenge for us RLS sufferers but very often once we have our symptoms under control we are able to meet the challenge. I speak from experience having once had a 9 hour flight during which I endured dreadful torture, never slept and spent most of my time walking around the toilet area. That was many years ago and having eventually found a medication cocktail which works for me I no longer fear travel. If you will make a post and provide details of how you are managing your symptoms, medication/dosages, what has and has not worked for you, we will do our best to try and help you.

[Polar Bear]

Tuesday 30 July 2024

Welcome to

Gurneyi who has Severe rls/plmd and is determined to get off meds.

Most of us with severe RLS would find it very difficult to find a treatment that will control our symptoms without resorting to medications. Take a look at the Physical Treatments Forum. If you have any questions please make a post giving us details of your current RLS management and we will try and help you.

[Polar Bear]

Wednesday 31 July 2024

Welcome today to

SL167 whose RLS has disrupted sleep pattern every night. It wakes SL167 up from a sound sleep by jerking leg muscles causing leg movement. It is troublesome at sleep onset and during the night.

Difficulty sleeping is usually what drives an RLS sufferer to seek help and we understand how you feel. Are your symptoms being treated by your doctor and has your Ferritin Serum been checked so that you are aware of what level you are at. Us RLS sufferers do best when the level is up around 100 and not just at 'normal' which can be anything from 20+. Read through the posts and see what rings a bell for you. If you have any questions please do ask. Giving some background information on how you are managing your treatment helps us to try and help you.

[Polar Bear]

Thursday 1 October 2024

Welcome today to

Topspinner whose wife has RLS and Topspinner is joining to support her.

It's wonderful that you are supporting you wife in this way. Is your wife on medication for RLS. Has her doctor checked her Ferritin Serum level. It is important to know your SF level which for an RLS sufferer helps us best if it is up around 100. You will find a lot of information here, probably starting with the Just Joined Forum. Please feel free to ask questions. We are here to try and help you and your wife.