DECEMBER 2022 - New Members

[badnights]

Welcome today to Bluesox, who has experienced such a worsening of symptoms that all advice, information and help is welcomed.Bluesox has severe WED/RLS, has augmented on "a number of the typically prescribed drugs" and cannot even take naps most days. Bluesox notes that it's tolerable to have symptoms in the evening, even though they're torturous, because one is awake then anyway, but symptoms at night are devastating.

How I agree! Welcome to the board, Bluesox, thought I certainly wish you (and all of us) didn't have any need of a board like this. Please feel free to start a Topic about your situation, telling other members what medications you have tried, what you are currently taking, and what you most need help with. We have a special Forum for Augmentation topics, but there are plenty of augmentation Topics in other Forums, especially General RLS and Prescription Medications. Also feel free to comment on other Topics, if that feels more comfortable to you.

[Rustsmith]

Thursday, December 1

Welcome to

nulemayoo, who has suffered from RLS since childhood and it has worsened in middle age.

Are you taking anything to manage your RLS, do you know your iron levels? Do you have any questions? If so, just post a message and we will try to help out.

[Rustsmith]

Friday, December 2

Welcome to

cporam13, who had RLS for several years before realizing what it was. Originally on 5mg hydrocodone; ultimately increased to 20mg once per night at bedtime. Been at that level for 1.5+ years; works great. Problem now is prescribing physician has been away for about 3 months. First fill in Dr allowed 30-day supply at Rx renewal (understandable). A month later, during second renewal, a second fill in Dr tried arbitrarily switching to different drugs, which cporam refused because wasn't it wasn't the primary Dr and knew nothing of 2nd doc knew nothing of history. Ultimately #2 cut the dosage in half to 10mg - which does NOT work. Now consulting with medical facility's patient liaison to complain about Dr #2. Looking for alternatives to both Rx and/or a Dr who better understands RLS in San Diego area.

My first suggestion is to check for an appointment with the Scripps Sleep center. They are an RLS Quality Care Clinic and should be able to help you out if you can get an appointment in a reasonable period of time. The second suggestion is what I had to do when my primary retired, which is to get on the phone and start calling every clinic in the area. Ask to speak with a nurse and ask if they would be willing to follow what your first doctor prescribed. It took me three weeks of calling to find a replacement doc, but I found one that is willing to write the prescriptions that follow the guidance of my RLS specialist (she is 100 miles away).

[Polar Bear]

Just to say I totally empathise with your position. 2 years ago I had to change doctors because of my address. New doctor received my medical history summary while waiting on my full file. Upon my first prescriptions request my opioid was cut in half. I phoned and spoke with the relevant doctor referring to my previous years of success on the opioid with any increase. She said she was not happy about the prescribed dosage. I, politely as possible, argued my case, first being that no way should an opioid be cut in half, what about withdrawals. I also asked her directly how many RLS patients she had treated and in particular those with severe 24/7 symptoms and who had augmented. Her response was that she had 'heard of' RLS.!! I also referred her to the RLS Foundation web site and offered to provide a copy of the Mayo Clinic Algorithm. Eventually she agreed to a drop of 10% saying that she wasn't entirely happy. I was happy as I had been managing on this 10% less dosage anyway and had been building up my emergency stash. Each month as I ordered my opioid I was nervous of the issue of the dosage level being raised but it never has been. During this time I saw a Movement Disorder Consultant who sent a letter to her prescribing the full dosage opioid.
It is so much up to us to fight our corner. However I do understand that here in the UK we may not yet have the same difficulties when it comes to opioids. To note my opioid is Cocodamol which is at the lower opioid scale and is also supported by Pregabalin which is prescribed for another condition but does help with RLS.
I wish you luck with Steve's suggestions. He knows what he is talking about.

[Rustsmith]

Saturday, December 3

Welcome to

Wyman, whose RLS has reduced his ability to go to sleep.

Have you discussed this with your doctor to get treatment? If so, what are you taking and did (s)he do bloodwork to test your iron levels, including ferritin? Please feel free to post a message asking any questions. We are here to help.

[Rustsmith]

Sunday, December 4

Welcome to

JeffKraemer, whose RLS has gotten extremely bad in the last few weeks and medication is not working. He can’t sleep at night and medication isn’t helping. He is willing to try anything.

If your medication is one of the dopamine agonists (pramipexole, ropinerole or rotigatine), there is a good chance that you are experiencing augmentation. Take a look through our augmentation forum to get an idea of what that is and what you need to do. Or, just post a note telling us a bit more and we can offer you some personalized suggestions on what to discuss with your doctor.

[Rustsmith]

Sunday, December 4

Welcome to

jbward46, who has suffered with RLS and sleeplessness for several years before an MD suggested it might be RLS. After diagnosed by a neurologist she had to try 3 different medications before experiencing relief from most of the symptoms. She is much better though not entirely symptom free. She feels like she lives with an invisible disability that has diminished her quality of life. She would like to learn from others experiences and contribute her own, if helpful.

We would love to hear about your experiences. As for your meds, one of the things with RLS is that you want to strive for about 95% relief. Attempting to get 100% relief either speeds up the time before you will need to change meds or leaves you feeling drugged all the time.

[Rustsmith]

Monday, December 5

Welcome to

claudia, whose RLS is a daily struggle, it has to be anticipated as a problem before any event. She has not been able to sit quietly and read a book for a long time.

If you have any questions or would like suggestions on how to better control your symptoms so that you can sit and read, feel free to post a message and we will help as we can.

[Rustsmith]

Monday, December 5

Welcome to

Jchrissa, who wants to get educated about RLS to be able help her mother.

We would love to answer any questions that you have, just post a message and we will try to answer them for you. Also, take a look around, especially the General Topic forum's research discussion (top item) or look through the files in the signature lines for each of the moderators.

[Rustsmith]

Wednesday, December 7

Welcome to

Gigi1100, who cannot relax at the end of her day. She also has insomnia so she is jumping and miserable.

First off, the insomnia is the other side of RLS. Are you taking anything to manage your symptoms? Do you know your iron levels? These are all important questions when it comes to treating RLS. If you have any questions, please feel free to post a message so that we can try to help you out.

[Rustsmith]

Saturday, December 10

Welcome to

Macadwel, who has RLS and would like to learn more from this forum.

We would be happy to explain whatever you need to know. All that you need to do is to post a message with whatever questions that you have.

[Rustsmith]

Sunday, December 11

Welcome to

Jimmy, who has had mild RLS for years, then had surgery which requires several prescriptions afterwards, and his RLS started getting worse. He was on Clonazepam first, then Mirapex, and now on Requip. He is having bad side effects though, and hoping to learn from others on the board.

The main issues with mirapex and requip are augmentation and impulse control disorders. For both of these, you need to get off of dopamine agonists (not switch to the patch or carbidopa/levodopa). Many doctors are not familiar with the latest recommendations for treating RLS and do not realize that the meds that you have been on are no longer the first line treatments. Feel free to post a message with any questions that you have.

You may also want to take a look at this document and then share it with your doctor if (s)he seems like the type who would be willing to learn. This is the latest recommendations for treating RLS by the US based experts on RLS. https://www.mayoclinicproceedings.org/a ... 0/fulltext

[badnights]

Today welcome to Dogwoods, whose RLS is relentless and who walks all night for relief.

Dogwoods, so sorry to hear that things are this bad, but at least you are not alone here. We all get it, we've all been thru it or are going thru it. Feel free to reply to posts, or better still, start a Topic of your own to tell us a bit about your situation. I hope you find the help you need here.

[Polar Bear]

Monday 12 December 2022

Welcome today to

Leifur who has had nearly 5 decades of torture and sleep deprivation that no one can possibly understand but those who also suffer from this incideous disease.

Very well put Leifur. Please read and gain as much information as possible, information is power when dealing with doctors and discussing treatment. If you have any questions please join a relevant thread, or start your own thread. Providing background information to your rls helps us to help you.

[Rustsmith]

Monday, December 12

Welcome to

endless runner, who started suffering over 40 years ago. Middle of one restless night probably 20 years ago, she went on line and found RLS is a thing. Validating as that was, she continued to struggle. She stays up late just to delay the frustration, never feels really rested and nods off during the day. She has to stand and pace or at least sway during long meetings. Car rides and plane rides are killers, especially on business trips with colleagues. She had to fight to get an iron infusion. She gets some relief, but it is short lived and incomplete. She doesn't know anyone else with RLS and expects she
can learn tools from other sufferers.

Other than the infusion, what are you doing to manage your symptoms? Are you still taking one of the dopamine agonists after all these years?

If you will post a message with any questions you have, we may be able to offer suggestions that you can discuss with your doctor that will provide more relief than you are currently getting.