The Battle

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Joined: Wed Oct 11, 2017 8:09 pm

Re: The Battle

Postby Oozz » Mon Jun 24, 2019 2:02 pm

XenMan wrote:
Oozz wrote:As much as I hate to say it, WED has made me a stronger and better person. It broke me and may break me again, but it will never defeat me. If it is alright with you, I’d like to continue sharing my thoughts here.

I stay away from the forums as there are too many 'drugs are the only answer' people. Having explored and experimented with my very bad RLS, my success and now normal sleep is due to accepting that all presented knowledge is wrong about RLS. Views are also USA centric with the absolute insanity of using opiates and benzos; which is sign of giving up and basically palliative care.

I wont waste my time with my views, but I'm here to encourage you to explore your own methods. You sound similar to me in that you have some common sense and experience with exercise and knowing your body. Other posts talked about trigger points, these are the starting points to successful management. I can only talk about the calf and foot region, but it should translate to other areas. I use a golf ball and roll it around finding the sensitive areas. You can't treat these during the day, but when you have symptoms while sleeping, if they are pressed for around 10 seconds firmly the RLS symptoms will stop for the night.

It is a bit of an art, but in time you will know the spots. They should also resolve over time, but new ones will emerge.

As for being broken, I have been there. It doesn't help with there being some bad stats on mortality for RLS sufferers as well as just losing my motivation for everything. Let your thoughts out and share them, just to know you aren't alone.

Good luck.

Thank you for the support. I've had some success w/you approach in that I used to get RLS in my legs and now I only get it in between my shoulder blades. I largely attribute this to stretching and foam rolling my legs. However, it doesn't seem to work the same for my back. Either the RLS comes back after 10-20 minutes OR it moves to the other side of my back. Its something I'd like to explore more in the future, but, in my current state, I cannot afford to experiment.

Are you sleeping through the night w/o any awakenings? And, how is the quality of your sleep?

I also understand your frustrations with the mainstream medical approach. Its analogous to the saying... "when all you have is a hammer, everything looks like a nail." With that said, I don't discount the progress made or the effectiveness of medication. For some people, myself included. its the only consistent way we've found to get sleep.

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Re: The Battle

Postby XenMan » Mon Jun 24, 2019 3:05 pm


I have been getting bigger and bigger blocks, with regular runs through to 0400. I do shift work and have always had a 0400 mystery marker for wake ups. I'm looking forward to a full night at some stage. What I am noticing is more vivid dreams, waking up and not being able to sleep indefinitely, as well as the heavy feeling and mental fog lifting.

I don't blame people for taking the medications, I blame the situation and particularly the moderators on many of these forums for creating the culture. I also accept that something physical, that is easy for me, is possibly beyond most people.

From my battles I realized that it is the areas you can't stretch that create the trigger points, with your back being like a treasure trove of places for an 'itch that can't be scratched'. When you have the experimental freedom, explore the possibility that where you feel the RLS symptoms aren't where the trigger points are. This what changed everything for me, as the RLS symptoms are tacit hallucinations. If you aren't a gym regular, I would say you are crazy not to be, as rowing and wide grip chin ups should hit all of your back muscles with the maximum weight for failure at around 10 reps.

I would suggest a hard ball and roll on your back on it. If you can find sore points you can work on them, or remember at night and roll on the floor to stop them. Flexing muscles is pure magic, you can feel the uncomfortable feeling of the RLS symptoms if you flex and release the right muscles. I know this is a difficult skill, but before bed build the mind muscle connection with your back and flex different areas. Hold to exhaustion, as well as pulse different muscles, try to feel the area you are flexing. When you get the symptoms, flex and hold different areas to find the spot.

When I started this over a month ago I would wake up with RLS symptoms, turn off the tacit hallucination by compressing the sciatic nerve, locate the trigger muscle and then press or flex it. No more RLS, back to sleep for the night. Over time, the symptoms are now only dull aches that don't wake me. I will always have this, and have to manage it; but now I can sleep.

All the best with it, you had success with your legs, so you know you can do it with any area.

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Joined: Wed Oct 11, 2017 8:09 pm

Re: The Battle

Postby Oozz » Mon Jun 24, 2019 4:21 pm

It has been almost a month since I made my initial post. Unfortunately, I have not made much progress in terms of sleep or rehabilitation. To be honest, it has been frustrating. I can deal w/the sleep deprivation pretty well, but its really the physical restrictions that is hard to bear. There are so many things I want to do with my son, but I just can't. There are so many things I want to do around the house, but I just can't. I have to ration out my energy wisely - each step, squat, or bend is deliberate. While some people can just reach up and grab a bag of sugar from the back of the cabinet, I feel every muscle, bone, and joint in my body compensating for my weak knees. Each task is a slow process. And, because of that, they seem to be piling up faster than I can finish them.i

During the first two weeks of June, my sleep efficiency improved; however, I wasn't make much progress on sleep quality. The improvement in sleep efficiency can be directly attributed to the sleep restriction. Its amazing how quickly I started to see changes. I think the sleep quality has struggled due to stress, as my job has been very busy and my team is short staffed.

I took some time off from work starting the 12th. I stopped the methadone the first two days so that I could switch to mirapex. However, I don't think that was enough time because now I need a higher dose of mirapex (.25mg) in order to get coverage through the night. Even at this dosage, I get a vague feeling of RLS... maybe just a phantom feeling. I'm also concerned of augmentation at this dose, but the benefit outweighs the cost at this moment.

On another note, for the past three nights,I've noticed two things: 1) I have been waking up gasping for air and 2) I wake up fairly early. As far as gasping for air, it happens 1-2x as soon as I fall asleep. It only happens when i first start falling asleep and it seems more like a panic attack than anything else. I don't snore and my g/f hasn't noticed anything unusua about my sleep. I haven't done a sleep study in 1-2 years, but, when I did, it showed very minor apnea. If this persists for a few more days, I'll probably talk to my doctor about it.

In regards to waking up early, its seems like I always wake up after 7-8 hours. Regardless of how much I actually sleep or how much "sleep debt" I have. E.g. I fell asleep at 10:15, but I woke up 1-2x gasping for air. As a result, I didn't fall fully asleep until around 12:00. Then, I woke up promptly at 6;00 AM. This wasn't always the case, as I used to be able to sleep for up to 10 hours if I needed it. Now, it seems like I cannot get more than 8 hours. This could be a function of the RLS or the meds wearing off.

Lastly, I'd like to comment on my previous hypothesis that my RLS is caused by chronic low-stress or certain environmental factors. The other day I took my son out w/my brother and his daughter. It was nothing special, just hung out, walked the dogs, talked, and got food. However, as I was leaving, I had this feeling of satisfaction. It was something I've felt before, usually after I accomplish something important or am on vacation. I knew at that moment, intrinsically, that I wouldn't get RLS that night. It was like I just knew. Sure enough, I slept like a baby w/no apparent symptoms and dosage of .~19MG mirapex. My morning

Then, two days ago, I went to hang out w/a childhood friend and I got the same feeling. I was going to leave early... around 6 and he asked me to stay, so we talked until 9. Then, as I was driving home I got the same feeling. It was like I knew I wasn't going to have RLS. Like clockwork - no RLS and great sleep. Although I had the night panic, i still actually slept a full 8 hrs.

The thing w/chronic low stress is that it is not apparent that the stress even exists. As I mentioned in my initial post, I do believe there are certain cultural pressures that create stress for us. Its like we are constantly at battle w/ourselves. In our hearts we believe one thing, but we do another thing to survive. Sometimes we don't even want to accept that these contradictions exist, we feel guilty for them. The stress could also be that we want things to be perfect, or that we want to be the best. So that pressure weighs us down. For most people the stress is not enough to cause any symptoms, but for others, like me, it may cause RLS. In response to this, I'm going to see a therapist. My hope is that having an outlet will allow me to better manage my stress, because I do get stressed out a lot.

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Re: The Battle

Postby ViewsAskew » Mon Jun 24, 2019 7:54 pm

Gasping for air - horrible feeling!

Learning to handle stress can only be helpful - let us know what you do and how it goes. I find - for me - that meditation is magical. I like both tai chi and yoga - because they both help me get into that same place. Walking meditation as well as writing meditation are helpful, too. Unfortunately, my RLS is at a stage that this doesn't eliminate it, but it does help me sleep better overall, which I greatly appreciate.
Ann - Take what you need, leave the rest

Managing Your RLS


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Re: The Battle

Postby sleepdancer2 » Tue Jun 25, 2019 8:23 am

Sorry to read you're still having troubles. Can't say I've got anything definitive, but just trying to think through some things. First thought was that Methadone can cause central sleep apnea, but you said the breathing episodes are happening after stopping the Methadone. Now I'm wondering how long it takes Methadone to totally leave one's system. And there is something called sleep onset centrals. Have you had a sleep study in a sleep lab? It could rule out any kind of sleep apnea. If your breathing episodes are every night, it could identify the cause of the episodes you describe. It could also give you a detailed look at your sleep and maybe even find something identifiable to treat. The neurologic part of the story would be of particular interest.
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