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Restless Legs Syndrome

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Vagus Nerve - Breathe to Heal

2everett profile image
23 Replies

You Tube

‘Breathe to Heal’ by Max Strom. He gives a short talk on dealing with stress:grief. He says it’s good to learn how to breathe before you begin meditating. He said PTSD combat sufferers are learning this technique through the MOD medical facilities. It can be used anywhere, any time to take back control of your nervous state. He talks viewers through process. He talks about modern lifestyles and how they are impacting on our health.

TED talks

TED Cape May Dec 2015

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2everett profile image
2everett
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23 Replies

Thanks for the info.! Learning how to breathe correctly is so important, isn’t it? My therapist once told me a startling fact about how many of us actually hold our breath! It is something we aren’t aware of, but if we stop and really go into ourselves, we will notice this! Therefore, learning how to breathe correctly is so important!

2islandboy profile image
2islandboy

‘Breathe to Heal’ -- Stress and RLS -- So very important! Thank you for this excellent post. Funny, I spent my childhood summers in Cape May. I am a poster child for someone who "needs" meditation. I can watch changes in my RLS intensity, as my stress level goes up and down. Day and night. But, I just don't seem to meditate. I know I would have a "better" life if I meditated, but I don't. I complain that I can't. Ha Ha! So, I take pills. Pills for depression, anxiety, RLS, Raynaud's, high BP, sleeping and tons of vitamin/mineral pills. In my wallet is a small plastic vial, with Mirapex and Valium, just in case!

Stress and RLS. The sacred cow, that we all don't want to discuss. I have been attacked on this forum, for writing - that FOR ME, stress and mental health are a huge part of my RLS of the past 20+ years. Some folks here do not want anyone to write about a connection between our mental health and our RLS disease (as in DIS -- EASE). I, like SO MANY people on this forum, take anti-depressants and/or other psych meds. Numerous RLS folks write about about being TREATED for RLS with these meds. Do these psych meds really "treat" our RLS, or do the meds treat our underlying psychological problems, which affect our RLS. (Or cause our RLS -- Ouch, that hurts!). Rarely, do we discuss treating our ongoing psychological problems and that our mental health effects ALL of our medical issues?

I'm just getting my life back after a nightmare divorce and 20 years of an often very unhappy marriage. Guess what? I've cut my Mirapex dose in half and stopped 3 years of sleeping pills. Minimal RLS -- why? I have PTSD and am talking with other PTSD folks.

For those friends here, who choose to attack me and argue that their mental health is not an aspect of their RLS. Go for it and I will now go sit under a Ficus tree, meditate and think about Budha.

PS: Two great books: "Healing Back Pain: The Mind-Body Connection" by Dr. John E. Sarno. and "When Things Fall Apart: Heart Advice for Difficult Times" by Pema Chodron.

2everett profile image
2everett in reply to 2islandboy

Hi

Thanks for reply. I was worried about posting this info on The Vagus Nerve because I have also been criticised on here. I don’t care anymore - this forum is for everyone to share info and discuss. There are no experts on here just ordinary people trying their best to make sense of this condition. Please post if you find out anything you feel might be useful to people on here. I saw a young man augmenting on tv a couple of years ago after being given the ADHD drug of choice routinely administered to ‘naughty’ kids in American schools. I did not want that to happen to me or anyone else. That is what keeps me posting. I believe that together we can crack this.

2everett profile image
2everett in reply to 2islandboy

It’s me again. I’ve often wondered if people on here were to reflect on their lives if they have ever been bullied (I have) or suffered grief (from death or broken relationships). I think it’s possible we have suppressed hurt and it’s coming out in this condition. I’ve also heard about ‘controlled shaking and ecstatic dancing’ as a way of releasing this nervous energy. I haven’t had chance to look into this yet.

2islandboy profile image
2islandboy in reply to 2everett

Here goes...

Brilliant --- "I’ve often wondered if people on here were to reflect on their lives"

Since you have asked this question, You might be open to this: I would say that the "Mind-Body Connection" saved my life. Three years ago, my brain overloaded on new PTSD revelations, financial catastrophe, marriage failure and I "developed" unbearable back pain. The back doctors found lots of mechanical back issues, but a friend, who is a research scientist and MD, listened to my life problems and told me about Dr. John E. Sarno (New York Neurosurgeon). My friend said, don't let them cut you!! He gave me the book, which I did not open.

For a month, I self-treated with Opioids and lost 40 lbs. as I lay in bed and therefore avoided all the mess in my life. Finally, I started reading this book and saw that it was MY LIFE and NOT my back that was the cause of my severe pain. My brain was creating a distraction by limiting the flow of blood to my back muscles, which caused horrible pain. As I read about how my brain controls my body and spoke with my therapist about these issues, the pain stopped and has never returned. Dr. Sarno, was trained as a neurosurgeon and for a few years did back surgery, but noticed that most of his patients also had "life problems". He found that if he talked with his patients and gave them physical therapy, the non-surgical pain outcome was the same or better than the surgical pain outcome.

Doesn't it seem suspicious that we are all searching for cures and really not finding much that works? What are we all missing? Is the answer perhaps, within ourselves and our lives.

For example, I can not change what happened to me, resulting in my PTSD. However, I can change my PERCEPTION of what happened and how I choose to let it affect me and my life. ACIM teaches that a Miracle is simply a change in perception!

Perhaps, “Physician, heal thyself.” also means PATIENT, heal thyself?

I believe that it is this same mind-body mechanism that may be a big part of our RLS problems. Here is a link to a mind-body/Sarno PDF with more information:

bozemannutritionist.com/res...

bozemannutritionist.com/the...

PS: I have given this speech (and book) to many of my friends. Most are so invested in the pain and keeping their problems, that they refuse to read the book and suffer. Sad...

2everett profile image
2everett in reply to 2islandboy

Hi

I will look into your link but it reminded me of the ‘tapping technique’ where we use certain pressure points(I think it’s where they’ve found the Vagus Nerve crosses certain points of the face and neck). As we tap we think about something which upset us in the past. The example in the video was being hit by our father for not getting a sum right. As we mentally relive this we remember what happened and our feelings - only this time around we think about our dad and his reasons - his own anxieties and ‘adult’ reasons for seeing the importance of us getting the sum right ie. probably us getting a good job/ie our survival - now we can forgive. This forgiveness heals. The video suggests that can be done for any negative memory - ie we change what happened. It might not be a true version but it will help with the negative thinking and help heal. Sounds crazy but who cares if it works.

in reply to 2everett

I have a friend who trained in tapping or that 'airy fairy mumbo jumbo' as I would have thought. I let him demonstrate it on me particularly because of an incident at work that was playing on my mind.

2 - 3 minutes later and a concern that had been plaguing me for several months was gone! I could remember the incident but without any fears and able to shift my focus away from it easily. I cannot recommend tapping enough.

2everett profile image
2everett in reply to 2islandboy

Hi

I’ve just read your link. It’s mind blowing- it makes me want to phone everyone up and tell them it’s physiological not physical. Hope everyone on here reads it as well.

Thank you so much.

2everett profile image
2everett

‘Psychological not physical.’ Is what I intended to write.

Spelling prediction changed it to physiological. Sorry

2islandboy profile image
2islandboy

We need to careful. RLS is VERY physical AND our psychological health has an EFFECT on our physical bodies. When my legs jump up in the air, it is quite physical and easy to see. I sometimes am yelling from pain/craziness when my RLS gets wild. This is very real and very physical. If somebody says it's all in my mind. Well, they can go pound sand!!

Just as we can improve our physical health with iron, magnesium, etc. What can we do to improve our mental health? What can we do to improve our exposure to societal toxins? What can we do to alleviate stress? Exercise or not? Our spiritual practice, or not? I still sleep with a bar of soap and tried wearing pantyhose (I'm a 6'2" guy). I get so crazy at 3:00 am that I will do most anything! We could have a whole thread on sex and RLS severity. I certainly see a connection. Seriously.

I hope this thread will lead to a discussion of a much broader health perspective and holistic solution to our RLS and more.

2everett profile image
2everett in reply to 2islandboy

Hi

I forgot to say during You-Tube meditation, I lie flat - no pillow. Allows blood to flow. Plus not a one time thing. Let me know how you get on.

2everett profile image
2everett

Hi

Yes. I agree an open mind and broader discussion and joint research is needed. I believe the answers are out there - not one answer but several. As you said holistic.

Kayakcarole profile image
Kayakcarole

Interesting that you should mention the connection between sex and rls. I only have morning sex because of that. I also do strenuous exercise in the morning since too much later in the day can make rls worse. I often stand in the evening when watching tv with the family and find I must stand when at a dinner party and everyone is still gathered in conversation at the table long term post meal. Again, I simply announce that I have crazy legs and can’t stay seated. I tell myself that everyone has something and this is my thing. At least it’s not terminal.

The bar of soap in bed helped for a few days and then not ( although I still have one there and change it out every few months)

Alcohol is a huge trigger and I miss the social pleasure of sharing in a glass of wine or a cocktail. All of my friends understand but I sometimes feel energetically left out of the fun at parties. Just have to tell myself positive messages about how things could be worse. I don’t live in a country with mobs or no available meds.

2islandboy profile image
2islandboy

RLS and the Opera. One side benefit of my RLS, is that I no longer have to buy expensive SEATS at the NY MET. 30 minutes into Butterfly and both I and the poor people around me are ready for a fight. I have to run for my life and go stand somewhere. Image the Ring with RLS !!

I now buy the cheapo Standplatz, in the back, where my legs can dance and I can even sing along!

Anyone think I could lose weight with my dancing legs exercising all night?

2everett profile image
2everett in reply to 2islandboy

I used to hate being asked to go to the theatre especially those upper circle seats which overlook the people below. My legs were all over the place and when I got up I had an overwhelming feeling that my legs would either throw me over or I’d be unable to resist the urge to throw myself over.

I also hate those seats on buses where the there is a ‘wall’ a couple of inches in front of ones feet. And, don’t even think about sleeping bags.

Hey guys! Can I join in here? This is an awesome thread and I’m following it with much interest!

One of the things that is helping me a lot is seeing a psychomotor PT. This kind of PT deals with the body-mind connection and helps patients find ways to relax.

Although still acting up a few times a week, my RLS has calmed down considerably. I attribute this mainly to recent medication changes, but I’ve also recently (with lots of help from my mental health team) been able to «break away» from parental influence (at age 37 and after almost 10 years of marriage it took long enough!) and declare myself my own person. Might be a connection there as well!

LotteM profile image
LotteM in reply to

Good to hear from you, Jess. Keep up the good work!

in reply to LotteM

Thanks, Lotte! Hope you’re doing well!

2islandboy profile image
2islandboy

2everett, for me, you've really started something here! Something really good!

Jess3648, thanks for the tip about psychomotor therapy. I'm reading about psychomotor therapy in treating ptsd. Odd, but as I read about this powerful modality, I get that pre-RLS tingling in my left calf. I will copy this post to my brilliant therapist, who was trained in Holland and uses talk and horses in the treatment of her patients - Hippotherapy. She is in NH, US.

Question? Does RLS trigger poor sleeping(and anxiety) OR does poor sleeping(and anxiety) trigger RLS ???

For me, my RLS problem isn't just the jumpy legs, it's that insane, creepy, yucky feeling that I just can't run away from. It's like Sigourney Weaver in "Alien". Or guinea-worms in Africa. Why have I, for years wondered about RLS leading to suicidal thoughts? Anyone else ever feel this at 3:00 am?

I am now a month "clean" of sleeping pills, after many years of nightly drugging myself to "sleep". My RLS has dramatically diminished and I have cut my Mirapex dose in half to 0.25mg. Still minimal RLS. BUT NOW, I wake often and suddenly at night, just like I used to with an RLS attack. I wake up feeling anxious, creepy and angry! I have to get up and walk around --- Exactly like I used to do with RLS attacks. But now my legs stay quiet.

I had always assumed that my RLS attacks woke me up at night and delayed my falling asleep in the evening. It now seems like maybe it's really something psychological or ???? that keeps me from falling asleep and wakes me throughout the night and that maybe this anxiety triggers the RLS?

So, all this takes me back to 2everett's post about breathing and meditation. AND finding a way to heal myself.

Jess3648, you got me thinking about all this with your phrase "declare myself my own person". The prospect of declaring "my own person" just leaves me blank.

Time to dig out Hamlet:

“This above all: to thine own self be true, And it must follow, as the night the day, Thou canst not then be false to any man"(woman).

I feel like my world may be shifting. Scary, but necessary...

in reply to 2islandboy

You’re welcome😎. If you click on my username and access my profile, scroll down to my post entitled «Relaxation Techniques». That is were I chronicle my first several PT sessions.

Does RLS trigger poor sleep or vice versa? That’s a good question! I think it can be both.

Is it the attacks or the psychological issues that wake us up at night? For me, it is the attacks. But....anxiety about what the night will be like also plays a role — the anxiety prior to sleep and the anxiety when that first hint of physical unease comes, where my night shifts from peaceful to where my brain wakes up and wills my legs to please settle down and not get worse.

2everett profile image
2everett in reply to

Hi

I’ve got to go out now cousins over from Ireland this weekend. Might be Tuesday before I can take a look. Sleep well!

jvanw918 profile image
jvanw918

I am so glad I stumbled upon this and I am going to get the book to read. I think it’s important to clarify that no one is suggesting the pain of RLS is ‘all in your head’. It is very real and very physical. What I am beginning to believe and I think is the point here (maybe I’m wrong) is that the medical community have very linear thinking patterns. If something in your body hurts then there must be something in your body that needs ‘fixing’. I don’t know why we don’t include the mind as part of our body. We even refer to ‘mental health’ as a totally different arena. I don’t know how much of this applies to RLS but I have noticed that I can have totally real physical symptoms when soemthing stressful happens. This has taken me a really long time to connect because i would not say ‘I get this pain when I feel stressed’ I would say ‘I get this pain in place of feeling stress’. If you asked me when I get this pain (I have pain in my back that gets terrible every now and then) if I was stresssd I would say no, that I feel pretty ok. BUT I started realizing that I would get the back pain after some kind of difficulty that objectively I would say should probably be categorized as stressful. I am totally waffling now but I am interested to explore this idea.

On the flip side of this I am realizing that if my stress is causing physical symptoms that the remedy is also physical. I think therapy is helpful but the idea that I can think my pain away is ludicrous. But making sure I am physically taking care of my body more when I am dealing with stress has become a priority.

Or i’m Just totally nuts - the jury is still out on that one. ;)

in reply to jvanw918

I like the way you think!

I had a meeting together with all my doctors and mental health team together in one location! (a pleasant surprise that I don’t think would ever happen if I still lived in the States). In this meeting I noticed that my neurologist seemed very dismissive of anything my PT said. I thought this was very cynical of him, especially since my PT is helping me in a big way. I brought this up to my therapist and she said some MDs don’t fully appreciate the work these types of PTs do. I think that is such a shame.

I’m like you in that I find it mind boggling how some suggest you can think pain away; I just don’t understand how something so physical can be thought away. On the other hand, though, I now know that stress (*immediate and past stresses) can manifest itself in physical ways. My PT once asked me what stress feels like in my body. At first I had no idea what she was referring to, but after thinking about it I was able to tell her my physical reaction to stress (my back starts to hurt, the nape of my neck tenses up, etc.)

*she has a poster in her office that says «the body remembers». The next time I’m there, I’ll take a picture of it, post it, and translate it (it’s in Norwegian).

She also has a hand drawn diagram of two people: one has his head disconnected from the rest of his body and the other has his head connected. She said that many people are like the one with the head disconnected and the goal is to be the person with his head connected. I’ll take a picture of that too.

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