APRIL 2024 - New Members

[Rustsmith]

Wednesday, April 3

Welcome to

jansessions, who is not sleeping.

Sleep problems are a major issue for those of us with RLS, but there are treatments that are effective provided that your doctor doesn't try the normal insomnia meds. If you can post a message to let us know what RLS meds you are taking and what you have tried to help you sleep, we may be able to help you out.

[Rustsmith]

Wednesday, April 3

Welcome to

Tompyro, whose RLS is so impactful on his life. He says that it is unbelievable how many hours sleep he has lost during an episode. He takes Requip 1mg dose. His Dr. doesn’t want increase the dose. It seems that lately his arms are becoming involved after going to bed. At that point it is “walky time”.

Your doctor is right in not increasing your dose. The fact that your RLS has spread to your arms is a warning sign that you may be starting to augment on the Requip. If that is the case, you will need to switch to a different class of med and stopping Requip will be VERY difficult.

To learn more about Augmentation, read through our forum on Augmentation. You can also learn about the latest expert recommendations for treating RLS (Requip is now a 3rd tier choice) by reading the document in my signature.

Finally, if you have any questions, feel free to post a message in the appropriate forum.

[Rustsmith]

Thursday, April 4

Welcome to

West_Coast, who was diagnosed and started on gabapentin 4 years ago, after reaching a point where nothing worked (massage, heat etc) and she was awake all night. Now she is chained to taking this medication every night, but even then she has regular problems with symptoms waking her up at night. It’s hard to find doctors who understand how to treat this.

Your best approach is probably to educate your doctor (assuming that she/he is willing to learn from a patient because many are not). Read through the document that the link in my signature points to and then share it with your doctor. And if you have any questions, feel free to post a message so that we can try to help you out.

[Rustsmith]

Thursday, April 4

Welcome to

West_Coast, who was diagnosed and started on gabapentin 4 years ago, after reaching a point where nothing worked (massage, heat etc) and she was awake all night. Now she is chained to taking this medication every night, but even then she has regular problems with symptoms waking her up at night. It’s hard to find doctors who understand how to treat this.

Your best approach is probably to educate your doctor (assuming that she/he is willing to learn from a patient because many are not). Read through the document that the link in my signature points to and then share it with your doctor. And if you have any questions, feel free to post a message so that we can try to help you out.

[Rustsmith]

Thursday, April 4

Welcome to

snowluvr, whose RLS not only does this disrupt sleep patterns it affects motivation to accomplish projects. If his wife didn't sleep so soundly, his constant getting up and returning to bed would disrupt her sleeping as well.

Is your doctor currently treating your RLS? Have you had your iron levels checked and do you know your ferritin number? There are ways to manage RLS so that you can get better sleep than it sounds like you currently get.

Feel free to post a message with any questions that you have. We are here to try to help you with information that your doctor may not be providing.

[Rustsmith]

Saturday, April 6

Welcome to

vegascurley, who needs help...vegas was on Neupro for about 10 years till the insurance company wont pay for the prescription. vegas hasn't been able to find anything that will help.

If you check the document that the link in my signature points to, you will find all of the recommended treatments by the RLS experts. There are a number of alternatives to the patch although your doctor might balk at prescribing some of them without being pushed.

If you have any questions, feel free to post a message so that we can try to answer them.

[Rustsmith]

Saturday, April 6

Welcome to

Jules, whose RLS has affected sleep and increased migraines/vertigo which causes anxiety.

Is your doctor treating your RLS and has (s)he done blood tests to check your ferritin levels? You might find that taking gabapentin or Lyrica would help with your sleep and possibly even help reduce the frequency of migraines.

To learn more, read through the document that the link in my signature points to. You can also post any questions that you have and we can try to help you that way.

[Polar Bear]

Monday 8 April 2024

Welcome today to

brennybear1964 is going crazy. brennybear has had RLS since 1998 and for about 10 years Mirapex worked. At the present, brennybear is awake for 2 even 3 weeks with minimal sleep. brennybear's iron saturation is good according to medical professionals. but is forever standing, walking, lay down, repeat. brennybear cries, laughs, screams and begs God for mercy.

It sounds like you are augmenting on Mirapex and need to get off of it. The forum on augmentation will tell you more.

It is so difficult to cope with RLS and we are here to try to help. The document in my signature details the recommended treatments by the RLS experts and is useful for discussion with your doctor. Please post and feel free to ask questions. We want to try and help.

[Rustsmith]

Monday, April 8

Welcome to

dmalone8, whose RLS began in the mid 30s. dmalone is now 52 and has been using medication to help control RLS for about 7 years but is finding that RLS and the the loss of sleep it causes is have a bigger effect on life with age.

Unfortunately, RLS tends to get worse with age, that is just a fact of life. That often means that we have to end up changing meds as we get older since the dopamine based meds that doctors tend to start us out with eventually stop working.

If you have any questions, feel free to post a message so that we can try to help you find an answer.

[Rustsmith]

Friday, April 12

Welcome to

Frostnow, who has leg cramps that are excruciating and thinks that they must be related to RLS.

Cramping is not necessarily related to RLS although they do occur. To qualify as RLS, you must meet all five of the criteria described in the following link:
https://gpcpd.heiw.wales/clinical/restl ... -criteria/

If you say no to even one of the criteria, your condition is not RLS but is something else.

If you have any questions, feel free to post a message on the board so that we can try to help.

[Rustsmith]

Friday, April 12

Welcome to

Renalyn, whose anxiety level has gotten higher. So she is trying to find the right treatment.

You can find all the recommended treatments for RLS in the document that the link in my signature points to. As for anxiety, gabapentin and Lyrica are often also used to treat those conditions too.

If you have any questions that you would like to ask, just post a note and let us know how we can help.

[Rustsmith]

Wednesday, April 17

Welcome to

Agw0006, who has suffered from RLS most of adult life. Agw is now 62 and was recently prescribed codeine due to the severe nature of Agw's symptoms. Agw personally refer to the condition as “restless body syndrome” because Agw also has the same sensations in the torso and arms. Before taking codeine, Agw would sometimes get out of bed and go into the living room and to shake the arms and legs as rigorously and for long as possible just to get relief. Agw has found it frustrating that those who do not have RLS just simply can’t understand it - nor is it possible to describe the sensations.

One of the RLS experts has said that RLS should stand for Restless Limb Syndrome because it can hit any voluntary muscle in the body. We are glad that you have found a doctor who is willing to prescribe Codeine, many are afraid of prescribing any opioid for RLS.

If you have any questions, feel free to post a message so that we can try to help.

[Rustsmith]

Wednesday, April 17

Welcome to

jushe, who turned to a narcologist for a prescription of tranquilizers and pregabalin for a congenital severe form of restless legs syndrome.
As a child, jushe's parents tied jushe's legs to the cradle.

We are happy that you have found relief. Pregabalin is one of the non-dopamine medications that is often prescribed by the RLS experts.

If you have any questions, feel free to post a message so that we can try to help you out.

[Rustsmith]

Wednesday, April 17

Welcome to

Darcj, who has RLS and it drives Darcj crazy!

Is your RLS being treated? Has your doctor checked your ferritin level and do you know the number?

If are interested and are willing to tell us more, we may be able to provide you with some help.

[Rustsmith]

Wednesday, April 17

Welcome to

JoyTexan, who suffers every night with RLS and lose sleep.

Both of those conditions are something that we all experience. If you would like us to make suggestions to help you get your RLS under better control, all that you need to do is to tell us about your current treatment and whatever questions that you have.