APRIL 2022 - New Members

[Rustsmith]

Sunday, April 17

Welcome to

jane249hardin*, who has some specific issues to talk about. She has been a Foundation member for many yrs.

We would love to discuss whatever you would like to cover. Just post a message to get things started.

[Polar Bear]

Monday 18 April 2022

Welcome to -

LDFL whose condition has worsened gradually for decades. LDFL is looking for alternate treatments.

Please do make a post in the Just Joined Forum and tell us about your RLS. Tell us what medications, if any that you have tried and what has or has not helped. Also look on the Non Prescription forum for alternative treatments.
Have you had your ferritin serum checked. This is important, it is a blood test but is not done with normal blood checks, you must ask for this and you are wanting a level of up about 100, not the 20 that is considered within normal levels.
Is your doctor helpful and willing to learn. We would like to help you.

[Polar Bear]

Monday 18 April 2022

Welcome to

MaShell whose dr wants to keep increasing her pramipexole instead of getting her off DAs. MaShell is looking for help in convincing him that's not the way to go. Just basically needs support. MaShell tired of fighting this alone and tired of people not understanding.

MaShell- we will all certainly understand your suffering and are here to support you. Please post and tell us about your medication history, what has not worked for you, and what dose of pramipexole you are taking at present. If your doctor keeps increasing the pramipexole he does not understand this drug, or rls. Have you had your ferritin serum checked. This is important, it is a blood test but is not done with normal blood checks, you must ask for this and you are wanting a level of up about 100, not the 20 that is considered within normal levels.
Please make a post in the Just Joined Forum and let us do what we can to help.

[Rustsmith]

Monday, April 18

Welcome to

VET4SHT, whose husband has RLS and she is looking for support and treatments.

We can definitely provide you with support as well as descriptions of the various treatments available, which range from iron therapy to the anti-seizure meds (gabapentin, Horizant and Lyrica) to the dopamine agonists and finally the opioids. Each has limitations and potential side effects that should be weighed based upon his other health conditions.

[Rustsmith]

Wednesday, April 20

Welcome to

1healthygirl, whose intermittent RLS that is increasing with age.

Unfortunately, the one thing that we can count on is that our RLS will increase in severity as we age. If you have any questions or would like some suggestions of treatments that can help, just post a note and ask.

[Rustsmith]

Wednesday, April 20

Welcome to

avatarza, who just joined RLS Foundation. She has had RLS for many years, along with sleep apnea. She doesn't take medications, does take some supplements, and use various methods to calm her legs. She would love to share what she uses and learn/try what others are using. She usually sleeps for two hours, then gets up and takes a shower and goes back to sleep. Her sleep is scattered, and she takes a good nap in the afternoon.

We would love to hear about the rest of what you are doing to manage your symptoms and would be happy to answer any questions that you have. All that you need to do to start a discussion is to post a note with your question or a summary of your treatment scheme.

[Rustsmith]

Thursday, April 21

Welcome to

erinrn, who has had RLS for almost 20 years and is now on Ropinorole 12 mg ER. She is looking for new treatment options.

That is a huge dose of ropinerole for treating RLS and that is a good indication that you may be in augmentation.

Here is a link to a document that describes all of the recommended treatment options and also provides a discussion of augmentation.

https://www.mayoclinicproceedings.org/a ... 0/fulltext

[Rustsmith]

Thursday, April 21

Welcome to

jospehsmaw, who has had RLS since high school, and is now 58 and it has only gotten worse. Because she has Major Depressive Disorder she requires strong antidepressants, which unfortunately make her RLS much worse which makes her doctor take her off of depression meds and struggle to find another one. She has insomnia, which does not make her RLS or depression better. She just needs to go somewhere where she can talk about RLS and how tortured she feels and with people who understand.

We all understand and many of us have similar situations. Please feel free to post a note with any questions or comments you wish.

1. There are two medications that are sort of like anti-depressants that will not make your RLS worse. In fact, they are very effective RLS meds. One is tramadol and the other is buprenorphine. Both are opioid pain killers that also have anti-depressant properties, but they have not been FDA approved as anti-depressants, so your doctor will have to do a bit of research before being willing to prescribe these double duty medications.
2. Your insomnia is not separate from your RLS, it has actually been found to be part of RLS in recent research. So, treating your RLS with something other than a dopamine agonist (Mirapex, Requip or Neupro) may help you get better sleep, which will help your depression as well as your RLS.

[Rustsmith]

Friday, April 22

Welcome to

Bindy, who was using Requip successfully for about 10 yrs and then developed augmentation. She is 68y and has so far not had luck with Gabapentin x 4 months of increasing dosage. She also has PLMD and averages about 2-4 hours of interrupted sleep/night x past 7 weeks and has turned into a cranky, impatient & depressed person. She is not sure what’s next as far as medication/treatment go. A lot of articles she has recently read do not paint a positive picture as far as treatments go.

Our experience is that there is always something different to try and often these are successful. In your case, the next step would normally be a low dose opioid, which is often methadone. But your doctor may (probably will) be hesitant to suggest this and may refuse if you ask. There are two publications that will help with this discussion. The first is a recent update to the treatment algorithm recommended by a group of leading RLS experts.

https://www.mayoclinicproceedings.org/a ... 0/fulltext

The second is a publication by many of the same experts that explains why opioids are an appropriate choice for someone like you.

https://www.mayoclinicproceedings.org/a ... X/fulltext

Both publications are written at a level that you should be able to understand (at least most of it). We normally recommend that when you visit your doctor with these that:

1) do NOT say that you found these on the Internet. That is a sure-fire turnoff for almost all doctors
2) read each publication and use a highlighter to identify a couple of relevant passages.
3) hand the publications to your doctor and say something like "I would like your opinion about how these documents may pertain to the treatment of my RLS". Explain that you do not expect an immediate answer, but could you come back in a week or so to discuss them after the doctor has had a chance to study what they say.

If your doctor refuses on any count, please come back, post a note and give us an update so that we can provide a few more suggestions.

[Rustsmith]

Friday, April 22

Welcome to

Rosendall, who has had RLS for 42 years and has been through augmentation. Rosenall relies on opioid treatment to alleviate severe RLS symptoms, but is afraid of losing access to this treatment option.

That is a fear that anyone who relies upon opioids experiences. All that we can do is be as politically active as we can to persuade the politicians, CDC and DEA not to cut us off from this lifesaving treatment option. Please take a look at the Foundation's website and participate in all of their requests to contact officials in Washington, DC

[Rustsmith]

Friday, April 22

Welcome to

Sunflower15, who has had RLS for many yrs. and has been on medication for 2 yrs.

If you have any questions, just post a note and ask away. If not, then feel free to jump into any of our discussions.

[Rustsmith]

Saturday, April 23

Welcome to

Mjohnsmall, whose RLS severely impedes his sleep. In turn, he believes many other healthy body functions are likewise negatively affected.

Sleep deprivation can cause many problems throughout the body. Research is being done that indicates that lack of sleep may be causing harm to our hearts and chronic sleep problems obviously harm our overall mental health.

If you have any questions, feel free to post a message and we will do our best to try to help you out.

[Rustsmith]

Sunday, April 24

Welcome to

crazelegs, for whom going to bed has become dreadful. She is constantly looking for relief. The lack of sleep is too much!

There are a number of techniques that you can use to improve your sleep. If you would like some suggestions, just post a note and tell us a bit about what you are currently doing to manage your RLS.

[Rustsmith]

Sunday, April 24

Welcome to

Gavin24, who was first diagnosed with RLS in 2019 and it has been a spiral out of control ever since. He feels like every night is a game of Russian Roulette to find out how well he will sleep and function the next day. He has 2 little kids (aged 2 & 6) and he often barely has the energy to be a good father to them. So, he is here to find out different treatment options because what he is currently taking is not working!

We would be happy to help you find a new medication to discuss with your doctor. All that you need to do is post a note that gives us an idea of what you have already tried. Or, you can take a look at this publication (which you might want to share it with your doctor).

https://www.mayoclinicproceedings.org/a ... 0/fulltext

[Rustsmith]

Monday, April 25

Welcome to

lisakjerome, who has suffered with RLS for ~38 years. It has greatly affected her sleep and her mental health. She finds it highly frustrating that family and friends do not fully understand that she should just "walk more" or "use a weighted blanket." Equally, if not more, frustrating, is she has not found a neurologist, sleep specialist or physician that can fully understand and treat her inclusive of all her conditions.

When it comes to finding a doctor who understands RLS, your two best bets both involve some travel. The surest way to get a doctor who "gets it" is to go to one of the Foundation's Quality Care Clinics. The second is to try the neurology department at the largest medical school in your state. Both will require travel, but we have members who go so far as to travel all the way across the country to see their RLS doctor. If you would like to discuss this further, just post a note with your question and we will do what we can.