The Battle

For everything and anything else not covered in the other WED/RLS sections.
Oozz
Posts: 77
Joined: Wed Oct 11, 2017 8:09 pm

The Battle

Postby Oozz » Sun May 26, 2019 3:34 pm

WED has been very tough for me. It’s been about 3 years since I was officially diagnosed. It’s mainly at night, on one region of my back. It’s not intense, but enough to keep me up at night.

If others don’t mind I’d like to use this as a space to unload some of my thoughts. I’m working through a lot of things and I have a hope, but it is still a battle everyday. Honestly, my 5 month old gives me the strength to stay strong every day and never lose sight of my goals - to one day run again.

In my previous life, I lived and trained like an athlete, I just wanted to maximize potential of my body. Whether it was cruising through the city on my bike or hiking some mountain, it was a feeling I couldn’t get enough of. But around the same time I got WED, I incurred a knee injury. The combination of no sleep and a tendon injury in my right knee, made the progress incredibly slow. Unlike other parts of the body, the tendon receives very little blood flow, making it more difficult to heal. Unable to get control of my sleep, the injury became chronic. Doctor after doctor, nobody could figure out why my knee wasn’t recovering. No structural damage in imaging, consistent PT, it was unexplainable. But nobody every bothered to ask about my sleep, why would they?

Around the same time, there were a lot of things happening. I met my current wife and we had just moved in together. It wasn’t until we started sleeping together that I really took an interest in my sleep. The way she just slipped off with such ease every night and woke up so refreshed was amazing to me. It was like magic. I knew something was wrong. In comes the sleep studies and doctors. In come the doctors, the the blood tests, the sleep tests, the medications. It took about 1.5 years for me to find Dr. Early and get on some consistent medication. Even then, it’s been up and down trying figure out something that is going to work consistent.

Although I found Dr. Earley, it was a tad too late. My good knee went bad because I was overcompensating for too long and now I could barely walk a block. Because my knees couldn’t bear the weight, my back would take a lot of the stress of standing or walking Causing it to go out all the time. There were frequent days where I could barely leave my room without being in excruciating pain. Again, the doctors couldn’t figure it out. My body lost all its muscle, I stopped going to work, I stopped seeing friends, I went to a very dark place. On top of this I moved into a job I hated and my wife got pregnant. Now I was trapped in a job I hate and a body that couldn’t function. Not being able to help her during pregnancy took away every piece of confidence I had left.

During all this, I had a few bouts where the meds would work for a bit or the WED would go away for a few weeks. When that would happen, I would recover fast. Around this time last year, I was walking pain free and got back into the gym, but my sleep went out of control and I spiraled back down. Then I started asking my doctors about sleep and recovery. None of them felt it could be my sleep causing the issues, it had to be mechanical. But, it just didn’t add up. I knew they had the best intentions, but it would really be up to me to figure this out.

I started reading intensively about sleep, WED, body mechanics, stress, etc. For reasons of my own, I never wanted to accept WED would be with me forever, I felt like I could cure it. Because it is not found in animal
Models, I felt that it was an epigenetic disease caused by various environmental and mental stresses in the modern human life. My theory was that, because our bodies and brains aren’t adapted for modern life, we are in constant conflict (stress) with our environment. And for a certain few, this causes disregulation somewhere in body or brain, throwing off our iron/dopamine/glutamate,etc. I believed that is why there are so many different forms and triggers of RLS, because it was really related to our environmental and mental state. But as started digging deeper, I found out that my father would stay up all night. It seemed he had some form insomnia. He died 10 years ago, but, from what’s gather, I think he had RLS. After probing My cousins, they seem to have sleep issues as well. And, there are many stories of my fathers family, back in Pakistan, staying up through all hours of the night. My mom told me that the house didn’t come alive until after 12 midnight.

So here I now, my son is 5 months. My knees are still bad but my back doesn’t go out. Each day I track my sleep and stress meticulously, I continue to experiment with different things to optimize my sleep with the hope that Nobody will ever feel as lost as I was. Everyday is a battle but, right now, I’m winning.

My circadian rhythm got out of track, so right now I’m doing sleep restriction therapy to get my sleep efficiency back. It’s brutal, but, after a week, I’m already sleeping much quicker. My current meds have been holding stable, although I foresee a switch from methadone/lyrica to mirapex/lyrica in order to improve sleep quality.

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.

Best,

Oozz

Rustsmith
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Re: The Battle

Postby Rustsmith » Sun May 26, 2019 6:10 pm

Oozz, thanks for sharing your story. It has a number of similarities to mine, including probably inheriting it from my father and being a trained athlete. Fortunately, I never experienced any major injuries and retired from competitive Masters track and road racing last year simply because I didn't have anything more to prove to myself and I simply got bored with year-round training by myself.

You mention that you have been reading a lot and the absence of animal models. Have you seen the research published last year by Dr Ferre at the NIH? They used animal models to identify the ties between iron, dopamine, glutamate and adenosine. This work could well be the precursor to introducing another class of medications to treat WED/RLS that may have fewer undesirable side effects that the current three types of meds.

Finally, why do you foresee a switch from methadone to Mirapex? Normally that change is the other way around. Methadone does cause opioid-induced insomnia in some of us, but switching the time that you take it to earlier in the day usually helps resolve this.
Steve

Augmentation Evaluation http://bb.rls.org/viewtopic.php?f=4&t=9005

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

Oozz
Posts: 77
Joined: Wed Oct 11, 2017 8:09 pm

Re: The Battle

Postby Oozz » Mon May 27, 2019 12:34 pm

It’s not the insomnia is the issue for me, it’s the lack of deep sleep caused by methadone. This study http://jcsm.aasm.org/articles/030106.pdf documents the effects of methadone on sleep architecture. In sum, opioids reduce slow wave sleep significantly. The caveat is that the study is short-term, and there is the potential that this side effect could wear off. However, this has not been the case for me. I track my sleep using the Oura Ring and take my HRV every morning. It is no EEG, but together they serve as a good proxy for assessing my sleep, both quality and quantity. After starting methadone, there has been a marked decrease in quality. Even going of feeling, I’m just not as refreshed.

Lyrica, known for increasing slow wave sleep, has offset this, but not enough so to make the sleep quality as good as mirapex/lyrica. To some, the cost-benefit of opioids may be there, but, for me, seeking full recovery from my injury, I need every bit of deep sleep I can get since it has the biggest impact on recovery.

Bridgercan
Posts: 19
Joined: Sat Jun 23, 2018 6:43 pm

Re: The Battle

Postby Bridgercan » Wed May 29, 2019 4:32 am

Hey Oozz—thanks for sharing your story. I just want to let you know after I read it, I felt inspired, especially what you wrote about WED making you a stronger and better person. I regularly feel discouraged by its effects on me, but your sharing has caused me to reflect more positively on the impact WED has had on me. Thank you and please keep sharing!

ViewsAskew
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Re: The Battle

Postby ViewsAskew » Wed May 29, 2019 7:11 am

Oozz, share away! So often our sharing is of the "need immediate help" kind that we don't get as much of the life story or thoughtful introspection. Nice to have more in the latter categories.

I wish, oh I wish, that I would adjust to one of the gaba drugs. They definitely improve my sleep. But, make me sleep for many, many hours (like 14). When I make myself get up, I am a barely functional. I find it fascinating that so many of us respond differently to the treatments.
Ann - Take what you need, leave the rest

Managing Your RLS

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

Oozz
Posts: 77
Joined: Wed Oct 11, 2017 8:09 pm

Re: The Battle

Postby Oozz » Fri May 31, 2019 1:09 am

Bridgercan wrote:Hey Oozz—thanks for sharing your story. I just want to let you know after I read it, I felt inspired, especially what you wrote about WED making you a stronger and better person. I regularly feel discouraged by its effects on me, but your sharing has caused me to reflect more positively on the impact WED has had on me. Thank you and please keep sharing!


Thank you for the kind words.

Oozz
Posts: 77
Joined: Wed Oct 11, 2017 8:09 pm

Re: The Battle

Postby Oozz » Fri May 31, 2019 1:13 am

ViewsAskew wrote:Oozz, share away! So often our sharing is of the "need immediate help" kind that we don't get as much of the life story or thoughtful introspection. Nice to have more in the latter categories.

I wish, oh I wish, that I would adjust to one of the gaba drugs. They definitely improve my sleep. But, make me sleep for many, many hours (like 14). When I make myself get up, I am a barely functional. I find it fascinating that so many of us respond differently to the treatments.


Thank you for your support. Yes, it is so complex. Often times that is what makes it so difficult to explain to others.

ViewsAskew
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Location: Los Angeles

Re: The Battle

Postby ViewsAskew » Fri May 31, 2019 7:42 am

Oozz wrote:
ViewsAskew wrote:Oozz, share away! So often our sharing is of the "need immediate help" kind that we don't get as much of the life story or thoughtful introspection. Nice to have more in the latter categories.

I wish, oh I wish, that I would adjust to one of the gaba drugs. They definitely improve my sleep. But, make me sleep for many, many hours (like 14). When I make myself get up, I am a barely functional. I find it fascinating that so many of us respond differently to the treatments.


Thank you for your support. Yes, it is so complex. Often times that is what makes it so difficult to explain to others.


Yes, it does!
Ann - Take what you need, leave the rest



Managing Your RLS



Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

debbluebird
Posts: 2037
Joined: Mon May 21, 2012 3:27 pm

Re: The Battle

Postby debbluebird » Sat Jun 01, 2019 2:45 am

I have to take my Methadone earlier in the day to prevent the insomnia. Good luck

badnights
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Location: Northwest Territories, Canada

Re: The Battle

Postby badnights » Mon Jun 03, 2019 4:53 am

I felt such a sense of familiarity reading your post. For one, your history of never-healing soft-tissue injuries sounds familiar to me, I have been experiencing similar things but luckily nothing that has completely stopped me, Both shoulders, a biceps, a hamstring insertion, tendonitis in both elbows, bursitis in the ankles. One shoulder took over two years to heal. No part that was injured is actually fully healed, but I am functional at least. I am lucky in that I go to a HIIT gym where the coaches can modify everything to accommodate injuries. I was able to keep going to the gym even when I was injured.

I don't know that you're totally wrong about what causes WED - "an epigenetic disease caused by various environmental and mental stresses in the modern human life" - despite your familial history of WED. Your parents and grandparents may have experienced different stressors but they still experienced them. And there is no doubt in my mind that simply the level of stress - never mind the type - encouraged by our modern lifestyle makes things worse.

I have a terrible time getting my circadian clocks to synchronize with each other and with the sun. At one point I had slipped so far out of sync with the day that I was going to bed at 6 AM. When I had to start fieldwork that summer, which entailed rising at 6 AM, I took extra meds to kill the symptoms and get to sleep for about 5 days, then suddenly I didn't need them - my clocks had re-sync'd themselves to each other and to daytime. It was glorious and made everything in my life so much better!

I am slipping out of sync again, tho, and sleep restriction doesn't seem to help, it just wears me out. Probably I have not approached it methodically enough.

As much as I hate to say it, WED has made me a stronger and better person.
Lol I too think WED has improved me. I would say it has given me a touch of humility. (But if anyone had given me the choice, I would rather be arrogant than have WED.)

@ Steve There are mouse models but not naturally occurring ones - I think that's what Oozz meant?

Anyway just be sure you have your ferritin up there before starting mirapex - and maybe check into iron infusions.
Beth - Wishing you a restful sleep tonight
Click for info on WED/RLS AUGMENTATION & IRON
I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.

Oozz
Posts: 77
Joined: Wed Oct 11, 2017 8:09 pm

Re: The Battle

Postby Oozz » Tue Jun 04, 2019 2:41 am

Steve There are mouse models but not naturally occurring ones - I think that's what Oozz meant?


Yes, that is what I meant. Although, that may be bro science as I’m sure there are quite a number of human pathologies that aren’t found in other animals.

sleepdancer2
Posts: 207
Joined: Sun Jun 29, 2014 7:46 am

Re: The Battle

Postby sleepdancer2 » Sat Jun 08, 2019 1:38 am

In my case my legs lost strength, were prone to injury, and never seemed to improve. For those of us who have periodic limb movements with our RLS, our legs work all night. There is chronic depletion with no restoration. At some point the well runs dry. I declined to the point I could no longer go up stairs. Compound the lack of restorative rest and sleep with augmentation that caused flailing that wrenched my knees in my sleep and doing leg lifts all night strained my lower back, and I was pretty deep in the abyss.

Oozz, if periodic limb movements happen to be a part of your picture, when considering meds do consider if the med stops your limb movements or makes you sleep through them. If a med just helps us sleep through them, our physical condition might continue to decline.
My Augmentation Sleep Video: https://www.youtube.com/watch?v=jE7WA_5c73c

Oozz
Posts: 77
Joined: Wed Oct 11, 2017 8:09 pm

Re: The Battle

Postby Oozz » Wed Jun 12, 2019 6:16 pm

sleepdancer2 wrote:In my case my legs lost strength, were prone to injury, and never seemed to improve. For those of us who have periodic limb movements with our RLS, our legs work all night. There is chronic depletion with no restoration. At some point the well runs dry. I declined to the point I could no longer go up stairs. Compound the lack of restorative rest and sleep with augmentation that caused flailing that wrenched my knees in my sleep and doing leg lifts all night strained my lower back, and I was pretty deep in the abyss.

Oozz, if periodic limb movements happen to be a part of your picture, when considering meds do consider if the med stops your limb movements or makes you sleep through them. If a med just helps us sleep through them, our physical condition might continue to decline.


How is everything now? Vastly improved i hoped?

Fortunately, periodic limb movement doesn't seem to affect me.

XenMan
Posts: 25
Joined: Sun Aug 26, 2018 7:41 pm

Re: The Battle

Postby XenMan » Thu Jun 20, 2019 11:44 pm

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.

debbluebird
Posts: 2037
Joined: Mon May 21, 2012 3:27 pm

Re: The Battle

Postby debbluebird » Fri Jun 21, 2019 5:35 am

sleepdancer2 wrote:In my case my legs lost strength, were prone to injury, and never seemed to improve. For those of us who have periodic limb movements with our RLS, our legs work all night. There is chronic depletion with no restoration. At some point the well runs dry. I declined to the point I could no longer go up stairs. Compound the lack of restorative rest and sleep with augmentation that caused flailing that wrenched my knees in my sleep and doing leg lifts all night strained my lower back, and I was pretty deep in the abyss.

Oozz, if periodic limb movements happen to be a part of your picture, when considering meds do consider if the med stops your limb movements or makes you sleep through them. If a med just helps us sleep through them, our physical condition might continue to decline.


It's interesting, you sound like me. I can not lift my right leg from a sitting position. There is no strength. The spasms in my right leg have pulled so hard at times, the muscles are tender in the middle of my thigh and the groin. A couple of years ago I did physical therapy, learned exercises that strengthened both legs, but mush improved the right leg.
Now the other muscles, for riding a bike and walking, they are fine. I ride 4 to 5 mile a night. Sometimes I ride a second round, another 4 miles or so. I ride when the spasms start. For some reason it helps. I've also been walking. I've built up to a mile. Yet I can't raise it when I am sitting. I have to help my leg when getting into the car or bed.


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