How do I deal with with my mental suffering caused by RLS?

[FakeBeans]

This is my first post and I don't really know how to start. I guess I'll start by saying that I am fairly young (24) and have had rls for about 5 months. My current priorities are finishing my degree and handling my relationship with my SO and RLS has really made it hard for me. I often find myself moping about my current situation and consequently isolating myself from others and falling behind on my university work and just overall being sad on top of the sadness that comes from sleep deprivation. I also start and finish my day looking through people's posts about their struggles hoping that someone will say that some scientists have found a cure. I don't know what to do. I feel like I can't really afford good treatment and even if I could I don't know if there are any doctors who can help in my country(though I haven't looked thoroughly). I just can't see a solution. Should I accept my current reality and just be at peace with it or should I try to do something ?

[stjohnh]

Hey, FakeBeans, sorry you are having problems, but glad you have found us. You will likely get some answers, but may not be completely satisfying to you.

To help, we need more information: What meds are you taking now, and what have you taken in the past. Are you male/female. Do you have other medical conditions besides RLS? How much sleep do you get with what you are doing now?

[FakeBeans]

Hey, FakeBeans, sorry you are having problems, but glad you have found us. You will likely get some answers, but may not be completely satisfying to you.

To help, we need more information: What meds are you taking now, and what have you taken in the past. Are you male/female. Do you have other medical conditions besides RLS? How much sleep do you get with what you are doing now?

I am currently not taking any medications nor have I taken any meds for anything besides the common cold, the flu and other such illnesses. I am male, 170cm tall and weight 75 kilos. Currently I am getting 3-4 of sleep per night on average. I have not taken any recreational drugs and also I don't smoke nor do I drink.

[Rustsmith]

FakeBeans, you need to learn to accept that RLS is part of who you are, just like being fat, thin, blonde, redhead, etc. There aren't currently any "cures", so we just have to concentrate on either finding a doctor who will be willing to provide the type of care that you need or educating your current doctor. If you can achieve one of those, that is more than most RLS patients are able to accomplish.

The second most important thing is to educate your SO. Life is FAR, FAR better if your SO understands and is thereby able to provide support rather than complaining about being awakened at 2AM when you have to get up and walk around. You won't need company on most of those nights, just understanding.

As for treating your RLS, you are at the point where your doctor hasn't started you down the wrong path, so get some help but get the right type of help. Understand that doctor's don't know everything, so assuming that your doctor is willing to learn and is truly interested in providing the care that you need, then a great place to start is to share this recent publication, which was written to provide guidance to doctors who either don't know about RLS or whose information is dated. https://www.sciencedirect.com/science/a ... 9620314890 Note that the first line of treatment is iron therapy, which could mean that all that you need is an iron supplement that is taken under your doctor's supervision so that you don't take too much.

You said that you are already experiencing sleep problems. You have probably already seen that many of the "normal" medications that doctors use to treat insomnia simply don't work for RLS. There are options out there that help, just don't let a doctor try to put you on an anti-depressant (they use them to treat insomnia but they make RLS worse and won't help RLS-insomnia) and don't be surprised if other sleep aids like Ambien, Lunesta, Sonata and Belsomra just don't help. The most effective sleep "aids" for most of us have been gabapentin/Horizant/Lyrica and edible marijuana (not smoked or vaped and only where it is legal).

Finally, as you already know, RLS can be challenging when it comes to the mental health challenges brought on by sleep deprivation. When the appropriate time comes, get help from a therapist. Don't let it drag out too long because sleep deprivation can cause major bouts of depression that can get severe that suicide starts creeping into your thoughts. Don't let it get to that point. And just like doctors, don't hesitate to switch therapists if the first one doesn't work out. I had to go through several before finding one that could help me.

[FakeBeans]

FakeBeans, you need to learn to accept that RLS is part of who you are, just like being fat, thin, blonde, redhead, etc. There aren't currently any "cures", so we just have to concentrate on either finding a doctor who will be willing to provide the type of care that you need or educating your current doctor. If you can achieve one of those, that is more than most RLS patients are able to accomplish.

The second most important thing is to educate your SO. Life is FAR, FAR better if your SO understands and is thereby able to provide support rather than complaining about being awakened at 2AM when you have to get up and walk around. You won't need company on most of those nights, just understanding.

As for treating your RLS, you are at the point where your doctor hasn't started you down the wrong path, so get some help but get the right type of help. Understand that doctor's don't know everything, so assuming that your doctor is willing to learn and is truly interested in providing the care that you need, then a great place to start is to share this recent publication, which was written to provide guidance to doctors who either don't know about RLS or whose information is dated. https://www.sciencedirect.com/science/a ... 9620314890 Note that the first line of treatment is iron therapy, which could mean that all that you need is an iron supplement that is taken under your doctor's supervision so that you don't take too much.

You said that you are already experiencing sleep problems. You have probably already seen that many of the "normal" medications that doctors use to treat insomnia simply don't work for RLS. There are options out there that help, just don't let a doctor try to put you on an anti-depressant (they use them to treat insomnia but they make RLS worse and won't help RLS-insomnia) and don't be surprised if other sleep aids like Ambien, Lunesta, Sonata and Belsomra just don't help. The most effective sleep "aids" for most of us have been gabapentin/Horizant/Lyrica and edible marijuana (not smoked or vaped and only where it is legal).

Finally, as you already know, RLS can be challenging when it comes to the mental health challenges brought on by sleep deprivation. When the appropriate time comes, get help from a therapist. Don't let it drag out too long because sleep deprivation can cause major bouts of depression that can get severe that suicide starts creeping into your thoughts. Don't let it get to that point. And just like doctors, don't hesitate to switch therapists if the first one doesn't work out. I had to go through several before finding one that could help me.

Thanks. You pointed out some medications that help. How much do they help exactly?

[Rustsmith]

The amount of help varies from person to person. Iron therapy and gabapentin/horizant/lyrica only work for about 65% of us (not the same 65% for each class). When they help, they can provide almost complete relief of your symptoms, but the goal is generally 95% relief so that you can enjoy that relief for a longer time before their effectiveness starts to drop (which is usually on the order of many months to years). The exception to that are the opioids, which tend to work pretty much forever. But of course, they have huge political luggage these days even though the dose for RLS is often very low and doesn't increase.

As for how well each class helps, that also depends upon the severity of your RLS. They usually work very well for those with mild to moderate RLS, but those of us with very severe RLS often find that we need to take a combination of two or more meds to get relief.

I can only speak for myself, but I take three different meds (iron doesn't help me) and the relief for the movement part of my RLS is nearly 100%. I still have issues with insomnia, which is the source of my ongoing search for the doctor who can provide the help that I need to have a nearly normal life.

[FakeBeans]

The amount of help varies from person to person. Iron therapy and gabapentin/horizant/lyrica only work for about 65% of us (not the same 65% for each class). When they help, they can provide almost complete relief of your symptoms, but the goal is generally 95% relief so that you can enjoy that relief for a longer time before their effectiveness starts to drop (which is usually on the order of many months to years). The exception to that are the opioids, which tend to work pretty much forever. But of course, they have huge political luggage these days even though the dose for RLS is often very low and doesn't increase.

As for how well each class helps, that also depends upon the severity of your RLS. They usually work very well for those with mild to moderate RLS, but those of us with very severe RLS often find that we need to take a combination of two or more meds to get relief.

I can only speak for myself, but I take three different meds (iron doesn't help me) and the relief for the movement part of my RLS is nearly 100%. I still have issues with insomnia, which is the source of my ongoing search for the doctor who can provide the help that I need to have a nearly normal life.

Do these meds work forever or do they fail eventually? And are they expensive?

[Rustsmith]

The only meds that have a tendency to quit working are the dopamine agonists. The opioids and gabapentin/Horizant/Lyrica class meds tend to work for many years. The only catch for these meds is that RLS can get worse with age, so instead of the meds stopping, it is simply a case of where you may need an adjustment to the dose. But these adjustments are usually minimal.

As for cost, most are available as generics, which means that they are fairly inexpensive. The exceptions are Horizant, Lyrica and Neupro, which are still being sold under trademark protection and are therefore pretty expensive (but the manufacturers often have programs to reduce the cost for those who need help. Without giving specific pricing, I can say that my cost (with insurance) for pramipexole and methadone is minimal. I take the smallest dose of methadone and my cost for 30 days of pills is about $5. By comparison, when I was using the Neupro patch 5 yrs ago, it maxed out my insurance co-pay, which means that I was spending $100/month.

[DreiTageWach]

Hey FakeBeans! I can relate quite well to your particular situation because my RLS started to become a problem right around the same age as you are right now. I was also in the process of working on a university degree at the time.

The first thing I'd like to say is that most likely you don't have to suffer through the mental hardship you are experiencing right now in the long term. Sleep deprivation can be torture, but even though there is no cure for the disease right now there are fairly effective treatments for the symptoms. I also find it important to stress that the impression you may get from reading posts around here is not very representative. There are many people out there whose symptoms are quite effectively managed by their medications and who lead perfectly normal lives. You will naturally read less such stories here because such people will have little incentive to engage with online RLS help communities.

You should still consider yourself lucky you found this place because there is so much valuable information available here about the treatment options available so you can make much more informed decisions about what to take. When I was in your situation I wasn't aware of any such resource and ended up taking a medication that I should definitely not have started with at the time, thus worsening my symptoms in the intermediate term.

I think the first step going forward should be to find a doctor who is knowledgeable about RLS and see what treatment he/she proposes. You can then come back here and get some insights into whether that is a sensible choice or not. I think most likely you will get prescribed an alpha-2-delta ligand like Gabapentin (which is very cheap) or a dopamine agonist. One very important thing your doctor should be aware of (or at least you) is that dopamine agonists have the tendency to cause augmentation (to worsen the symptoms in the long run) if the dosage is getting increased beyond a certain point. There is an entire category of threads devoted to that issue here in this forum where you can get useful information.

I am curious in what country you are since you're worried about affordability of treatments? Will you be able to go see a doctor at least?

[FakeBeans]

Hey FakeBeans! I can relate quite well to your particular situation because my RLS started to become a problem right around the same age as you are right now. I was also in the process of working on a university degree at the time.

The first thing I'd like to say is that most likely you don't have to suffer through the mental hardship you are experiencing right now in the long term. Sleep deprivation can be torture, but even though there is no cure for the disease right now there are fairly effective treatments for the symptoms. I also find it important to stress that the impression you may get from reading posts around here is not very representative. There are many people out there whose symptoms are quite effectively managed by their medications and who lead perfectly normal lives. You will naturally read less such stories here because such people will have little incentive to engage with online RLS help communities.

You should still consider yourself lucky you found this place because there is so much valuable information available here about the treatment options available so you can make much more informed decisions about what to take. When I was in your situation I wasn't aware of any such resource and ended up taking a medication that I should definitely not have started with at the time, thus worsening my symptoms in the intermediate term.

I think the first step going forward should be to find a doctor who is knowledgeable about RLS and see what treatment he/she proposes. You can then come back here and get some insights into whether that is a sensible choice or not. I think most likely you will get prescribed an alpha-2-delta ligand like Gabapentin (which is very cheap) or a dopamine agonist. One very important thing your doctor should be aware of (or at least you) is that dopamine agonists have the tendency to cause augmentation (to worsen the symptoms in the long run) if the dosage is getting increased beyond a certain point. There is an entire category of threads devoted to that issue here in this forum where you can get useful information.

I am curious in what country you are since you're worried about affordability of treatments? Will you be able to go see a doctor at least?

I live in Bulgaria and like most other easter European countries it's a mess. I can visit a doctor but I don't know of any doctors who specialize in RLS .