What Relationships?

Share how living with this disease can and does impact your relationships. How do you cope? What questions to you have?
restlessknight
Posts: 5
Joined: Sat Dec 22, 2018 8:48 am

Re: What Relationships?

Postby restlessknight » Sun Jan 06, 2019 3:01 pm

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.

restlessknight
Posts: 5
Joined: Sat Dec 22, 2018 8:48 am

Re: What Relationships?

Postby restlessknight » Wed Jan 09, 2019 10:29 am

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

badnights
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Location: Northwest Territories, Canada

Re: What Relationships?

Postby badnights » Fri Jan 11, 2019 3:14 am

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).
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.

badnights
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Probable Augmentation

Postby badnights » Sat Jan 26, 2019 3:49 am

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.
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.

leggo_my_legs
Posts: 309
Joined: Sun Oct 16, 2016 12:29 am

Re: What Relationships?

Postby leggo_my_legs » Wed Jan 30, 2019 12:37 am

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.

badnights
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Re: What Relationships?

Postby badnights » Tue Feb 05, 2019 6:16 am

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.
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.

wishfull
Posts: 1
Joined: Sun Mar 11, 2018 1:37 pm

My nights in hell

Postby wishfull » Fri Feb 08, 2019 9:40 am

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

Polar Bear
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Location: N. Ireland

Re: What Relationships?

Postby Polar Bear » Fri Feb 08, 2019 8:40 pm

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.
Betty
http://www.willis-ekbom.org/about-rls-wed/publications
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

legsbestill
Posts: 505
Joined: Tue Aug 30, 2016 7:22 pm
Location: Dublin Ireland

Re: What Relationships?

Postby legsbestill » Mon Feb 11, 2019 9:05 pm

Red wine is an invariable trigger with me. I hardly ever drink it any more as it always causes a bad night.


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