JULY 2023 - New Members

[Polar Bear]

4th July 2023

Welcome to ddkjohn7 whose RLS condition has robbed him of any afternoon relaxation. He can't sit down to watch a movie or read a book. All travel by car needs to be completed by 2PM or it get very uncomfortable. He lives every day with fear of when his legs will start "tingling".

We hope we can help you. Please make a post providing details of how you have been coping, what you have been doing to treat your rls symptoms. This will give us a starting point to look to the way forward.

[Polar Bear]

Wednesday 5 July 2023

Welcome today to

joycerouse who has been on Sinemet for a very long time and is now augmenting. She is very worried.
Sinemet is not a drug that should be taken long term. Please make a post and tell us about your rls and medications and doses. We can then do our best to help.

[Polar Bear]

6 July 2023

Welcome today to

Moonbeam55 who has suffered from rls for 9 years. Augmented way back in 2014. Was prescribed pramipexole for many years and then gabapentin.
Please post and provide details of your medications/dosages .
We are here to try to help.

[Rustsmith]

Friday, July 7

Welcome to

Painful17, whose husband has RLS and to be able to help him find relief would be amazing. He has sleepless nights even with the medication…..learning is critical for her. Dopamine makes sense, going to PCP for additional drugs or changing meds….

The dopamine type meds are currently the third line treatment for RLS, but many doctors use them first because their info is out of date. His doctor needs to do blood tests to determine his iron levels (specifically ferritin, which needs to be over 75, not 20 as the lab will report as low normal). The second tier meds after iron therapy (which can take weeks or months), are the alpha-2-delta drugs (gabapentin, Horizant and Lyrica). Then the dopamine meds followed by the meds of last resort, the opioids (but they always work). To learn more and maybe even educate his PCP, take a look at this document that was prepared by some of the leading RLS experts in the US. https://www.mayoclinicproceedings.org/a ... 0/fulltext

And if you have any questions, please feel free to post them. Providing answers to your questions is why we are here.

[Rustsmith]

Saturday, July 8

Welcome to

robing102, who is looking for what others have success with this disease that steals a couple nights of sleep each week.

There are quite a few ways to manage RLS, depending upon the severity of your case. If you have any questions after looking through our discussion threads, just post a message with any questions that you have and we will do what we can to help you out.

[Polar Bear]

Monday 10th July 2023

Welcome today to

Generalhoohs who finds RLS is awful, has it every night and can't sleep.
Please make a post and let us try to help you. If you tell us about your medications and dosages, what has and hasn't worked. We can then hope to make suggestions that will be helpful.

[Rustsmith]

Thursday, July 13

Welcome to

jswid, who wants to investigate more options for treating my RLS - it's reaching new heights of prolonged agitation despite the meds. jswid is taking Pramiprexole (for years), Seratame, doxylamine, Mg. jswid is super frustrated and exhausted.

If you have been on pramipexole for years, there is a high probability that you are experiencing augmentation, which is where the med stops helping and starts making your RLS worse, and most doctors are not familiar with this side effect since it only applies to RLS. If that is the case, then you need to get off of pramipexole, and not by switching to ropinerole or rotigatine. Here is a link to an article that describes all of the treatment options currently recommended by the experts. https://www.mayoclinicproceedings.org/a ... 0/fulltext

If your doctor is the type that is willing to learn (many are not), then highlight the part about augmentation and share it with your doctor. If that does not apply to your doctor, your best bet may be to find a doctor that is an RLS experts. The best place to start on that journey is to check the list of Quality Care Clinics on the Foundation's website www.rls.org

If you have any questions, please feel free to post a message. We are here to try to help you out.

[Rustsmith]

Friday, July 14

Welcome to

Bilbo, who is tired most days from sleep disturbed nights, almost every night. Bilbo has RLS in the arms and shoulders as well as legs, (even into the intercostal muscles sometimes). It makes life a misery. Bilbo has been on IMIPTRAMINE for several years, which helped at first, but now seems to be making the condition worse.

IMIPTRAMINE is a tri-cyclic antidepressant and almost all anti-depressants are known to be potent RLS triggers. Doctors prescribe them because they are also sedating. You need to get off of the anti-depressant (but do not stop abruptly). You need to taper off following your doctor's (or pharmacist's) guidance. Anti-depressant Withdrawal Syndrome is a horrible condition that occurs when quitting too quickly and can leave you with severe depression, anxiety, nightmares, etc.

Here is a link to the treatments that the RLS experts recommend. The first line treatment, iron therapy helps, but can take a while to become effective. https://www.mayoclinicproceedings.org/a ... 0/fulltext

[Rustsmith]

Saturday, July 15

Welcome to

Rgg9129, who feels that the anxiety around loss of the sleep due to RLS is worse than the condition itself.

This may very well be true for many of us, especially those who have moderate RLS that is otherwise well under control. Doctors seem to like to treat this sort of thing with antidepressants, but be careful since that can make things worse. Do you know what your ferritin number is? If it is less than 75, treatment with iron therapy may help.

[Rustsmith]

Saturday, July 15

Welcome to

OliviaLee, whose RLS is beyond what she can stand most days. She has not had luck finding a doctor and is struggling.

If you have a doctor that you believe would be willing to accept guidance from you and learn, you can share this document that was prepared by the RLS experts for the purpose of educating doctors. https://www.mayoclinicproceedings.org/a ... 0/fulltext

If not, many of us have found that we need to travel to find a doctor familiar with RLS rather than relying upon our local PCPs or neurologists. Here are some suggestions:
1. Take a look at the RLS Foundation Quality Care Clinics. The drawback here is that demand is so great that new patient appointments can be difficult to get.
2. Check with the nearest major teaching hospital's neurology department or major medical school. Often the doctors in these organizations are more likely to investigate your problem if they are not already familiar with it. They are also less likely to give up on you.
3. Check the Foundation's listing of doctors that have self-reported that they treat RLS. Some will claim more expertise than they really have in hopes of getting patients with the milder form of RLS.
4. Check with the Foundation's patient support group for your area. The support group leader often knows which doctors can help and which ones to avoid.

And you are always welcome to post a message here and ask if someone on the discussion board knows of a doctor in your area.

[Polar Bear]

Tuesday 18 July 2023

Welcome today to

Mconnor who has had RLS for over forty years.

We are glad that you have found us and trust that you will find lots of useful information. The Just Joined Forum is a good place to start. Please feel free to ask questions and we will do our best to help you.

[Rustsmith]

Tuesday, July 18

Welcome to

hlroge, who has RLS and can’t sleep at night and is very frustrated with pramipexole.

Pramipexole is a double edged medication for RLS. It helps in the early days but starts making things worse later on, which is called augmentation. Switching to a different form of treatment (not a different dopamine med) and quitting the pramipexole are what is needed, but can be very difficult and many doctors don't understand that there are alternatives.

If you need more information, just post a message with your questions and we will do what we can to help you out.

[Polar Bear]

Wednesday 20 July 2023

Welcome to

BostonJody who suffers from rls and has been miserable for many years. She could not tolerate methadone or buprenorphine. Now taking oxycontin and feels she has augmented.

Please do post and tell us about your rls treatment and all of the medications you have tried. We would not expect augmentation to occur with the medications you have mentioned.

[Rustsmith]

Friday, July 21

Welcome to

Linzee22, whose life has been pure hell since she first was diagnosed with RLS 10 years ago. She hopes that she can learn something from this forum.

We would be happy to provide whatever information that you need. All that you need to do is post a message that gives us an idea of what you are currently doing to manage your RLS so that we will have an idea of where to start.

[Polar Bear]

Saturday 22nd July

Welcome to

RestlessRick who has struggled with RLS for two decades. It has affected his quality of life and in particular his ability to fall asleep. Sitting down for long periods is impossible.

You describe two issues that we all understand very well. Please post telling us how you have been coping with your symptoms, what medications, if any, that you have tried and what has or has not worked. This gives us a starting point to try and help you.