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Re: What Relationships?

Posted: Sun Jan 06, 2019 3:01 pm
by restlessknight
Bless you for the kind words. I certainly will discuss this information with my doctor. I will try the pills in for now. Are these infusions something you or someone you're aware of have tried? If so,what was the efficacy? I would also be interested in knowing how you personally deal with things.
How bad are your symptoms? Do you have a support network etc.?
Once again, thanks for the kind words.

Re: What Relationships?

Posted: Wed Jan 09, 2019 10:29 am
by restlessknight
Thanks you very much for the kind words and information. I will try the iron pills. I will also discuss infusions with my physician. Has this been a treatment you or others have tried. If so, was it effective? I'm also curious about the severity of your symptoms and any coping skills used to deal with them. Thanks again

Re: What Relationships?

Posted: Fri Jan 11, 2019 3:14 am
by badnights
restlessknight, if you don't mind telling us, what are you taking now and how much? I wonder if you're augmenting - if you're taking a DA, you might be.

Before starting iron you should be sure you can safely do so (no danger of iron overload, and iirc you're not supposed to take iron with thyroid medication.)

Holland and Ann (viewsaskew) and a few others here have gotten iron infusions. Lots of us take oral iron, myself included (though I would love to try infusions and perhaps rid myself of some or all of my medications).

My coping strategy is similar to yours but not so coherent :)
- Also - a big one - I have lowered my expectations. I can't do as much as I used to, and I can't do it as well, but I'm still a nice person and have some intrinsic value.
- I never (anymore) waste any energy getting angry about it all. Would have could have what would I have been like if this hadn't happened to me - - those thoughts dominated me for years but I have, thankfully, gotten rid of them for the most part.
- Something I'm working on now is treating myself gently - getting rest when I need it, even if I can't sleep: just sitting or lying if my symptoms will let me, and physically resting. For years I walked or stood the entire day - at work, reading at home, eating - always standing. I recently discovered that I don't need to do that anymore, and my body is enjoying the rest.
- Another thing I'm working on is de-stressing. My job has become very stressful since I'm still trying to act like a fully functional person and I haven't been for a long time - the lowered expectations thing - and we know how stress makes everything worse, including WED/RLS. So I am getting back into meditation, with only 10 minutes a day most days, but sometimes multiple times a day. My doctor even asked if I wanted meditation to be prescribed to me! She considers it that important. The trouble I have with it is falling asleep - realizing I am dreaming, not meditating.

My entire support network is this discussion board, without which I would be - well, maybe dead. I'm not sure.

My symptoms have been called the most severe my neurologist had ever seen. He had not seen many bad cases, but they were very bad then. They have improved since I eliminated gluten, dairy, added sugar, and heavily processed foods, and added vast quantities of vegetables and some organ meats and more fish. My symptoms are fairly well controlled with 9-10 mg hydromorphone. My biggest problem is the associated insomnia - I can't get a deep sleep. In fact, I can't get any sleep at all during the night without medications (zopiclone, pregabalin, and now also some CBD:THC oil), but I can still fall asleep in the daytime some times. I don't get a chance to try it very often. (another reason I should quit my job).

Probable Augmentation

Posted: Sat Jan 26, 2019 3:49 am
by badnights
restlessknight wrote:I take the following; 5mg oxycocdon, 1mg pramipexle,and 300mg gabapentin.
I took 4mg of pramipexle for a while but augmentation was a concern. My Neurologist also presented a study showing it actually my cause RLS/PLMS to possibly progress more rapidly.

restless, even though you wisely decreased your dose of pramipexole, and that has to be helping you, you never stopped the DA completely, so your dopamine system is probably still out of whack. Your dopamine system doesn't "re-set" until some time after the pramipexole or other DA is stopped completely. The time required is usually a couple of weeks, but can be longer.

Plus, your current 1mg dose is 4x higher than the 0.25 mg maximum recommended by most RLS/WED specialists. There is a link below my name under every post I write, from which you can download a paper by Dr Buchfuhrer in which he makes these recommendations, which are now accepted by most other specialists. The whole paper might be of interest to you (and you should print it for your doctor - or better still, get the Foundation's Medical Bulletin) but here is the relevant part:
Although the FDAapproved,
maximum doses for ropinirole and pramipexole
are 4 mg and 0.75 mg, respectively; many physicians exceed
this dose, especially when treating daytime symptoms that
may require 1 or 2 additional doses per day. However, after
10 to 15 years of experience with these drugs, concerns
regarding augmentation of RLS symptoms by these drugs
have made many RLS experts rethink the doses used to treat
RLS, and even whether these drugs should be first-line
drugs of choice for this disease. Due to concerns regarding
augmentation of RLS, In the opinion of this author and
several other RLS experts, the maximum doses of dopamine
agonists should be much lower than the approved FDA
doses (such as 0.25 mg for pramipexole and 1 mg for
ropinirole).

I am not familiar with the study that suggests the WED/RLS may progress more rapidly when taking DAs but I do know that the personal experience of a lot of us, and the thoughts of a number of RLS/WED specialists, are that taking DAs or augmenting from them can cause permanent or long-term damage to the dopamine system in the body. For instance, these comments by Hening, Early, Chokroverty and Allen (book) about DA augmentation:
"There is a concern that augmentation represents a significant disruption of the dopaminergic system that may become a major problem for the patients later in life. The delayed onset of augmentation suggests some slow but persistenly developing proces disrupting dopaminergic function. We assume that at some critical point this process stabilizes and does not continue causing dopaminergic disruption. But the delay in expression of the problem may reflect a slow, persistent process continuing indefinately. In such a situation the effects of this slow, persistent process could be masked for years by slow increases in doses of the DA's. It will take several years of extensive clinical experience treating RLS with these meds before we will know the long-term sinificance, if any of RLS augmentation".

If you read the definition of augmentation, you may be able to deduce for yourself if you were experiencing it at 4 mg and if you still are. Augementation is a paradoxical worsening of symptoms caused by the dopmaine-type drugs (Sinemet/levo-carbidopa, Mirapex/pramipexole, Requip/ropinirole). It is very likley to happen in people with low ferritin levels, and is more likley at higher doses of the medication. It is also more likely the longer you've been taking a dopamine-type drug. Once you have it, increasing the dose might help temporarily but eventually increases the augmentation. Sometimes the augmentation can be controlled (for a while anyway) by an additional, earlier dose. If you have augmenation, your regular evening dose still works, but you start developing symptoms earlier in the day, or in more body parts, or you get more severe symptoms.

{{{{{{{{{{{Technically, for you to be augmenting:
1. All of the following must be true:
- you have had an increase in symptom severity as compared with when you started treatment
- the increase in symptom severity cannot be accounted for by other factors (change in medical status, lifestyle, natural progression of the disorder)
- there was a prior positive response to treatment

2. Also, either A or B has to be true:
A. persisting paradoxical response to treatment: WED/RLS symptom severity increases some time after a dose increase and improves some time after a dose decrease; or
B. earlier onset of symptoms. This can mean either an earlier onset by at least 4 hours
OR and earlier onset by 2-4 hours accompanied by one of the following:
- shorter latency to symptoms when at rest, as compared to before treatment
- extension of symptoms to other body parts, as compared to before treatment
- greater intensity of symptoms, as compared to before treatment
- shorter duration of relief from treatment, as compared to before treatment
}}}}}}}}}}}

Here's an interesting quote:
Severe augmentation invariably causes such distress that people are desperate for relief. Increasing medications further provides little relief and may ultimately intensify symptoms. Stopping the drug will eventually relieve the augmentation, but this may take some time - leaving the patient in great distress. The time it takes for the effects of augmentation to wear off can be quite variable, lasting several days to weeks. Opiods can be used short term to control the intense RLS symptoms in these cases. There are other options for therapy once the effects of augmentation have resolved......
From: Buchfuhrer, Hening, and Kushida, 2007. Restless Legs Syndrome. American Academy of Neurology Press, Quality of Life Guides, Demos Medical Publishing, New York, p. 106.

There is more information on augmentation and critically, on ferritin levels and the role of iron in WED/RLS, in the link under my name below.

Re: What Relationships?

Posted: Wed Jan 30, 2019 12:37 am
by leggo_my_legs
badnights wrote:
My coping strategy is similar to yours but not so coherent :)
- Also - a big one - I have lowered my expectations. I can't do as much as I used to, and I can't do it as well, but I'm still a nice person and have some intrinsic value.
...
- Another thing I'm working on is de-stressing. My job has become very stressful since I'm still trying to act like a fully functional person and I haven't been for a long time



So eloquently described. I relate. I have been finding myself starting to accept my situation and adjust my expectations of myself. Over the past few years I have begun to reckon with myself as someone with an invisible "disability," and a member of the "disabled" community. ("Health condition," might be more accurate, but there's a "disability" community and there's not really a "health condition" community--except by the name of the health condition. I hope I'm making some kind of sense?!) :lol:

I'm so with you about work. Working full time, I am surrounded by mostly healthy people (or those masquerading as such. If they're masquerading, they seem to be doing a much better job of that than I am). There's a name for that...it's called sampling bias or population bias. It makes me feel like a weirdo because I'm surrounded by mostly healthy people, which causes the illusion that everyone in the world is healthy and I am the lone person who struggles. It's a very isolating feeling. It's so freeing and validating to come here and learn otherwise.

Re: What Relationships?

Posted: Tue Feb 05, 2019 6:16 am
by badnights
I am surrounded by mostly healthy people (or those masquerading as such. If they're masquerading, they seem to be doing a much better job of that than I am) ...
I'm surrounded by mostly healthy people, which causes the illusion that everyone in the world is healthy and I am the lone person who struggles. It's a very isolating feeling. It's so freeing and validating to come here and learn otherwise.
legs, I would guess that some people you'd least expect it of are masquerading - and that you have a better facade than you think. That last might not be a good thing; I think we should somehow (without becoming whiners) let people know that things are not 100% in our lives. But I fail at that, except for one person at the office whom I work a bit more closely with than others, she might get it -- - or she might just be making the right noises.

My nights in hell

Posted: Fri Feb 08, 2019 9:40 am
by wishfull
Alternating Sifrol and Lyrica my nights are not too bad. With a strong painkiller for my hernia and a sleeping pill I can manage. But when I have a lovely evening with friends, drink two glasses of champagne and one glass of red wine., my nights become a hell. Is it the delicious food, the champagne. The excitement? I am so punished afterwards. But such a night comes regulzrly also after a quiet evening. Good i don’t have stronger pills in my home: I am ready to use them during my hous in hell

Re: What Relationships?

Posted: Fri Feb 08, 2019 8:40 pm
by Polar Bear
wishful - There are many triggers for rls symptoms and alcohol is one such trigger. So your champagne and red wine could well be the culprit.

And yes, a bad night after a quiet evening.
Sometimes there appears to be no reasoning as to when symptoms play up more. Do bear in mind that, tobacco, sugar, ice cream can also be common triggers. Antidepressants can trigger symptoms. Also over the counter medications can often be a problem especially Benadryl and Antihistamines.

Re: What Relationships?

Posted: Mon Feb 11, 2019 9:05 pm
by legsbestill
Red wine is an invariable trigger with me. I hardly ever drink it any more as it always causes a bad night.

Re: Struggling with relationships?

Posted: Mon Nov 25, 2019 5:34 am
by Icantsleep
restlessknight wrote:Wow! It's very late and I had the opportunity to read many of your experiences with relationships. Thank you for sharing. I've been married to a wonderful woman for 28 years. I have three sons who are all fine young men. I was diagnosed with severe RLS 14 years ago. It worsened and I also have severe PLMS. I've gone through all the standard treatments and and now facing methadone as a last line of defense.

I usually go without sleep at least 2 days a week, often consecutively. Most days I get a few hours of sleep, which are always fitful. My condition worsened, and the reality set in that no one knew how hard it was to mange my irritability. Anger, frustration and loneliness are a constant companion.
My wife believes she understands and is remarkably supportive. Ironically, this can make me more frustrated. Many times I thought my family would be better served if I separated from them. Those of us with this affliction know how it drives us to places we don't want to be. The struggle to maintain a "normal" life is an almost unbearable burden. I see how others feel when they simply want to isolate themselves. Social interactions can be terrifying. I say things that may be inappropriate or simply nonsensical. Isolation solves many problems but creates equally terrifying consequences. It seems there is no way to win.

My heart genuinely aches for those who suffer. There is a coping strategy that has helped. I simply refuse to become a victim. I'm not saying it works all the time, but it works. Most of us would give anything for those we love. To focus my attention on myself leads me to despair. I look at this disease as an enemy of those I care for. Every day I survive and keep this enemy at bay is a victory. I draw my strength and confidence from my disease rather than let it rob me of the same. If my problems spread to those I love, then RLS wins. I make it personal. I may feel terrible, but they won't know. Depression and anger may be the cards I've been dealt, but I won't pass those cards on. I don't always win but at least I have the dignity to fight. Those that care for me deserve the best of me.

If you are isolated and alone, I feel for you. No matter who you are or what your dealing with you can crawl back out into the light. You deserve it. See your disease as an enemy to be fought with confidence and faith. There is someone who needs you, even if you haven't met them yet. It takes time to regain you power but you will. I'm not a remarkable person. If I can do it, anyone can. You are not alone, ever. Many of us feel just as low. Take comfort knowing that all over the world there are others who understand. You may not be able to share your plight with with family or friends, they just can't understand. But,perhaps view yourself as a soldier. You are fighting for a life you deserve against a mighty foe. You may not be able to see your fellow troops, but we are here. We understand. Try not to be a victim. If you have a bad day, start again the next day. Life gives us what we ask for. We just need to create a place for it to happen. Create a place for your own victory. Be a quite hero for those you love.

Thanks again for sharing your stories. It helps me remember I'm not alone.
Wow

You are remarkable

I wish I could have your attitude and outlook
Perhaps I will someday

I'm having a really really really hard time mentally and physically, especially with my children
.... and more so my non24 hour circadian rhythm disorder
My family decorated the Christmas tree without me today
I will be up all night without anyone to keep me company, except when everyone wakes up screaming like they did an hour ago .

I'm trying to keep horrible thoughts out of my head

Re: What Relationships?

Posted: Mon Feb 24, 2020 12:52 pm
by restlessknight
I'm terribly sorry to read how troubled you were. I hope things have turned out better since your post. Maybe you're underestimating yourself. It sounds like your doing a great job of taking care of your children. They seem to be your strength. finding a source of inspiration is the foundation for your success. They need you and you won't fail them. This disease , for me, creates doubt that I'll be able to continue to be a husband and father. The symptoms we endure are bad enough but the fatigue it causes creates a place for self-doubt to creep in.

It sounds like the holidays were tough. There's more pressure on us during the holidays. Money, family, and the minor chaos these days bring add pressure. Our normal response is to avoid these things but the nature of Thanksgiving and Christmas prevent us from the separation we sometimes need. I use the word "need" because for us it is a need. We have to make room for these needs. Missing decorating the tree must have been hard. It represented something big for you and you missed it. But you're still here. That's what's important.

You are "mom" and that's doesn't change because you missed the decorating. You have the hardest job in the world and you doing it with one arm tied behind your back. You are the hero in your story, not the victim. Unsung and often unappreciated. That's what most heroes are. They are often tired and frustrated people that make extraordinary sacrifices for others. If that definition is true, then it seems to describe you.

Your children will hopefully never understand how hard it is for you sometimes. They won't know how you feel or all the little things you do for them. That's the way we want it. That's what makes you a good mom!

Stay strong for them. Give yourself permission to rest when you can, and remember, you're not alone.

Re: What Relationships?

Posted: Sat Dec 16, 2023 11:14 pm
by gsurpur
Hi, I agree with most of you here. I am quite afraid of people bcoz they dont understand what i am going thru, iys too hard for me to handle relationships, I have almost stopped thinking about anything in this world except my sleep issues. I dont invite guests..i have forgotten what is normal these days.

Re: What Relationships?

Posted: Sat Dec 16, 2023 11:30 pm
by gsurpur
I also feel that we do not live life like others...always worried about sleep..some worries lingerin gon our mind.

Re: What Relationships?

Posted: Sat Dec 16, 2023 11:36 pm
by gsurpur
Thank you so much for your encouraging words, due to my RLS i kind of gave upon my career, myrelationships, fun , friends.

Re: What Relationships?

Posted: Sun Dec 17, 2023 6:48 pm
by Rustsmith
Life is what you make of it. I have turned my RLS into an opportunity to teach others about the condition. You would be amazed at the number of times that I hear comments, like "I have that" or "one of my siblings struggles with RLS". But, then again, since RLS hits 15% of the population, maybe I shouldn't be surprised. I also take the opportunity to educate my doctors. I even had one jokingly tell me that I had made his life more difficult. After learning about RLS, he began to see it in a number of his patients.

As for worrying about sleep, worrying only makes it worse. I just accept the fact that some nights will be difficult (as in zero sleep) and find ways to constructively use the extra time rather than lie in bed and fret about it.