JANUARY 2023 - New Members

[Rustsmith]

Tuesday, January 3

Welcome to

Coopesu, for whom all was well for 20 years,then augmentation hit and Coopesu has been in complete misery for the last 3 years. Coopesu has gained nearly 200 pounds due to stress eating and that is ruining Coppesu's health. Coopesu finally found an RLS specialist but what they are doing so far is only offering minimal control. Coopesu is hoping to connect with others who have RLS and learn from them how to cope with this.

We will be happy to help. To start with, here is the latest guidance on treating RLS.
https://www.mayoclinicproceedings.org/a ... %2931489-0

And please feel free to post a message with any questions that you have. We would love to help you through this.

[Rustsmith]

Tuesday, January 3

Welcome to

ternecetf, whose RLS gets in the way of his being happily and usefully whole.

What are you currently doing to manage your symptoms? Has your doctor tested your iron (ferritin) levels? Do you have any questions that we can answer? All that you need to do is post a message and let us try to help.

[Rustsmith]

Wednesday, January 4

Welcome to

Kharson56, who suffer from RLS. It is getting worse and almost unbearable. So, Kharson is looking for suggestions.

If you will post a message that gives us an idea of what you are currently doing to manage your RLS, that will give us an idea of what to suggest

[Rustsmith]

Wednesday, January 4

Welcome to

adele0717, who has severe RLS. Her sleep is affected. She is on medications that used to work but only work part time now. She is now getting scared that it can't be controlled.

It sounds like you may be augmenting on one of the dopamine agonists. If you are not familiar with augmentation, read up on it in our Augmentation forum. Even very severe RLS can be controlled, but the challenge is often finding a doctor that understands and is willing to take the steps required. Here is a document that might help calm your fears that it can be controlled. https://www.mayoclinicproceedings.org/a ... %2931489-0 And if your doctor refuses to prescribe opioids (assuming that you are augmenting), please let us know so that we can offer suggestions around this hurdle to receiving adequate medical care.

And feel free to post a message with any questions so that we can try to help as much as possible.

[Rustsmith]

Wednesday, January 4

Welcome to

Jerdeb, who has been dealing with RLS for 30+ years and says that it is Impossible to relax and that long trips out of the question.

Most of us can relate to those issues. If you would like suggestions on how to improve the control of your symptoms so that you can relax and consider long trips, just post a message with a short description of what you are currently doing so that we will have an idea of where to start.

[Rustsmith]

Thursday, January 5

Welcome to

Mkplant, who has been treated for RLS for many years now and it has become the central concern of her life. She has been through most suggested drugs and has experienced augmentation with pramipexole and now she is facing complete unavailability of ropinirole and has no idea what to do. She lives in Vancouver Canada. She is hoping that the experience of other members of the forum might provide some useful advice.

I don't know about the area where you live in Canada, but I understand that some jurisdictions allow products a low dose of codeine to be sold over the counter. This might help. If you have been through gabapentin/Lyrica without success, that leaves trying to convince a doctor to provide a prescription for a low dose opioid (such as codeine). Yes, that can be a challenge, but it is something that done. I had my GP retire last fall and spent three weeks searching for a doctor who would write the opioid prescriptions that I rely upon.

And if you post a message asking about it, perhaps one of our other Canadian members can help.

[Rustsmith]

Saturday, January 6

Welcome to

Denno, for whom sleeping/lying down, even sitting in many cases, is intolerable without medication. Denno feels trapped with ropinirole.

There are other options for treating RLS. Has your doctor checked your iron levels? Are you augmenting on ropinerole so that you need to switch to a different med? If you have questions or would like guidance about your other options, just post a message so that we can help.

[Rustsmith]

Saturday, January 6

Welcome to

Mara59, who lives in Greece . She lives horrible situations because doctors are very ignorant there. She has had dopamine agonists with adverse effects of severe panic attacks, lyrica and neurontin making her suicidal without relief of the initial symptoms.There is only tramadol available and she wants to raise awareness for other meds to be brought here.

Here is a link to the latest information available for the options for treating RLS. If this doesn't help, just post a message and we will try to provide whatever answers that we can. https://www.mayoclinicproceedings.org/a ... 0/fulltext

[Rustsmith]

Saturday, January 6

Welcome to

Savanna1!,who has had eight years of symptoms, but was just diagnosed.

Unfortunately, your experience is fairly typical. Have you begun treatment yet, or are you still waiting for the results of blood tests? To learn more, take a look at the publication in the link that appears in the Welcome to Mara59, just above. Or simply post a note with your questions.

[Rustsmith]

Tuesday, January 10

Welcome to

FancyNancy, who has suffered with RLS for more than 40 years. Multiple family members and her children are afflicted to varying degrees. By far, at 65, it is the one thing that negatively affects the quality of her life. She is looking to improve that.

There are a number of effective treatments, but we need to have an idea of what you are currently doing so that we can have an idea of what options are available for you. If you will post a message, we should be able to help you out.

[Rustsmith]

Wednesday, January 11

Welcome to

snarfang, who has had RLS for 17 years now, her mum and nana have had it longer. She has an appointment with her local neurology department in March, Sje would like to get as much info as possible. She is currently withdrawing from ropinirole with my Dr's advice due to it causing agressive moods.

The best current information is found in this document: https://www.mayoclinicproceedings.org/a ... 0/fulltext

Print it out, highlight a couple of relevant sections and then hand it to your doctor saying something like "I would like your comments about what this says".

And feel free to post a message with any questions that you have. Ropinerole withdrawal can be difficult and is something that many of us have been through.

[Rustsmith]

Wednesday, January 11

Welcome to

Cathyb, who has had RLS off and on since she was 11 yrs old. Now at 47, her periods of remission are becoming shorter every year and she struggles almost every night with waking up from sleep. She is starting to dread going to bed. She also is starting to be affected while at rest during the day, which wasn’t a problem before. She is not on any meds for it. But she has recently decided to make it a priority with her doctor as it’s really affecting her life.

First off, keep in mind that many doctors do not know how to diagnose and/or properly treat RLS. At your stage, your doctor needs to do blood work (an iron panel plus ferritin). If the ferritin comes back below 75 (be sure to find out the number, don't accept "normal" since normal for everyone else is anything above 20), then the first step should be oral iron supplements. If it comes back below 40, then a knowledgeable doctor would recommend an iron infusion (IV treatment). Oral iron supplements should be 325mg of iron sulfate plus vitamin C taken on an empty stomach. It will take a number of weeks for this to help, so don't be discouraged when it doesn't help overnight. If that doesn't work, the next step would be to try gabapentin or Lyrica. However, many doctors who are not up to date in their knowledge will prescribe a dopamine med [pramipexole (Mirapex) or rotigatine (Requip)]. Do not let your doctor jump to this stage because these drugs have side effects that eventually hit everyone and getting off of them is a nightmare.

But to be prepared! Read through this document, print out a copy and have it ready to share with your doctor if (s)he immediately says to take one of the dopamine meds. You might even want to highlight some of the beginning section and then ask your doctor for his/her comments if (s)he doesn't follow the recommendations. [url]https://www.mayoclinicproceedings.org/a ... lltext/url]

And always feel free to post a message with any questions that you have. We are here to help provide the answers that many doctors either cannot or will not give you.

[Rustsmith]

Friday, January 13

Welcome to

juliegrojean, who is constantly aware that she has RLS, as she has meds in her purse always, just in case she has to sit for a period of time. She can never sit and read a book or take a nap or long car rides without thinking of taking half of a pill. It got worse after she had a knee replacement.

We can all relate to the issue of fearing being without our meds as well as not being able to read, nap or long car rides. If you have any questions, feel free to post a message so that we can try to help.

[Polar Bear]

Sunday 15th January 2023

Welcome today to

LizzieGee whose RLS symptoms started about 10 years ago and continue to increase, now has it every night and many nights only gets 3-4 hours sleep. Has used Ropinorole and Mirapex. These don’t provide relief. Lizzie wants to find out how to get this condition under control.

If you have used Ropinerole and Mirapex without benefit, (did they help to begin with ?) and if these meds were increased without benefit, it is likely that you may have suffered augmentation. Are you still taking these meds and if so you will need to come off them which is no easy task. They are no longer considered the first step of treatment. Take a look at the Augmentation Forum. Has your Ferritin Serum level been checked, this is important.
Please make a post, tell us of your medication history and what has or has not worked. What has your doctor done to help you. This will give us a starting point to do our best to help you.

[Rustsmith]

Tuesday, January 17

Welcome to

Celesteskycop, who is at her wits end. She feels so alone. She cannot find a doctor who will listen to the iron research. No one besides her husband and family know about her RLS because it sounds trite. What? your legs kick from 4 pm o 10 am? big deal. You're not dying. No one is lining up to do a fundraiser walk for RLS.... except maybe down the bedroom hallways at night.... back and forth.... She would like to talk to people who understand and can help her get the treatment she needs. She has been dealing with this for over 30 years and it has ruined her life. She has lost relationships over this. She has lost jobs because of this. She lost her ability to have children over this. She cannot sleep, cannot think and cannot continue like this.

You are NOT alone. We all understand and are here to help.

First, try sharing this document with your doctor who might be the most receptive. Highlight the relevant parts and ask of his/her opinion. Do not say that you got it off of the Internet (a sure turnoff for all doctors). https://www.mayoclinicproceedings.org/a ... 0/fulltext

Next, if you live within reasonable traveling distance of one of the RLS Foundation's Quality Care Clinics, they will provide you with whatever is the most appropriate mode of treatment for you. Here is a link to that page https://www.rls.org/treatment/quality-care-centers

But if they are all too far away, here are some suggestions. 1) call all of the neurologists in your area who accept your insurance and who list Movement Disorder as one of their specialties. 2) call the neurology department at the nearest major teaching hospital and ask if they have a doctor on staff who treats RLS. 3) call all of the GPs in your area who accept your insurance and ask to speak with a nurse. Ask if the doctor is familiar with treating RLS, knows how to treat RLS patients who are experiencing augmentation and understands that "normal" iron for RLS patients is not the same as normal for the general population. In each case, the answers that you get should be telling. And DON'T be surprised if the specialists do not have new patient appointments available in less than six months. Demand is high and the number of qualified doctors is inadequate for the demand.