CONTROL your RLS

God, grant me the serenity to accept the things I cannot change,

courage to change the things I can,

and wisdom to know the difference.

Karl Paul Reinhold Niebuhr : The serenity prayer.

This post is intended to present information about the psychological concept of “control” and it’s relevance to the holistic care of RLS.

What is control?

A simple psychological definition might be that control is how a person manages their own behaviour and how they wish to influence their environment in order to achieve their health goals.

There are different types of control and this post will focus on one type, i.e. “perceived control” a person's perception of their ability to achieve their health goals.

NOTE : it’s common for people’s main goal to be to achieve ”health”. However, this then depends on what the person sees as “being healthy”. Modern definitions of health go beyond health just meaning an absence of illness. Those with long term conditions, (e.g. RLS), should not think of themselves as being “unhealthy”.

Somebody can be healthy then, despite their RLS, diabetes, disability etc.

Numerous studies have shown that a lack of perceived control has a significant impact on how well people manage to achieve their health goals, physical as well as psychological, the ability to tolerate pain, recovery from illness, decreased tumour growth, and daily functioning

There are two things about this which appear to be significant.

1) Perceived control isn’t necessarily realistic : people may believe they either have more, or less control than they actually have.

2) People’s will act according to how much control they feel they have. A perceived lack of control can lead to a negative self-fulfilling prophecy.

How realistic then generally, is the perceived control that RLS sufferers feel they have over their condition?

The concept of “locus of control” has been around for decades and is an important concept in the field of health psychology. It has been proposed that it is a personality characteristic.

Internal locus of control – a person feels that their actions can influence their outcomes

External locus of control – a person feels that they have no control and their outcomes are influenced by external events.

It has been found that generally people with RLS have a low internal locus of control and consequently this will negatively affect what they think they can do about their RLS.

pubmed.ncbi.nlm.nih.gov/237...

Here are some resources that may help you develop a more internal locus of control.

verywellmind.com/develop-an...

wikihow.com/Develop-an-Inte...

michaelhilgerslpc.com/where...

As well as locus of control there may be other factors that may influence how much control people with RLS feel they have over their RLS.

1) The doctor patient relationship : this may apply to ALL health conditions.

The 3 main goals of modern doctor-patient communication are supposed to be creating a good interpersonal relationship, facilitating exchange of information, and including patients in decision making.

This can help promote a person’s sense of control.

Barriers to good communication can undermine a patient’s sense of control and include

Deterioration of Doctors' Communication Skills over time : doctors in training tend to lose their focus on holistic patient care.

Non-disclosure of Information i.e. doctors withholding information which they think might upset the patient or which they think is of “no concern”

Doctors' Avoidance Behaviour : avoiding discussion of the emotional and social impact of patients' problems because it distresses them when they feel they cannot handle these issues or do not have the time to do so adequately

Discouragement of Collaboration : Physicians have been found to discourage patients from voicing their concerns and expectations as well as requests for more information Patients can feel disempowered (lacking control) and may be unable to achieve their health goals

It has to be recognised that patient’s behaviour too may be a barrier.

What can you do?

Patients should recognise that they are not passive recipients and are able to resist the power and expert authority that society grants doctors. Expert authority does not mean moral authority or inequality.

Note that there are legal and ethical codes which can support the patient in this.

This requires self-confidence, self-esteem and assertiveness, things which may be lacking as a consequence of RLS.

They can implicitly and explicitly resist the one way giving of information by doctors by using expert information to assert their own perspectives, integrate with their knowledge of their own bodies and experiences, as well as the social realities of their lives

THE PATIENT can be an EXPERT on their own condition and themselves.

In an ideal world, doctors should collaborate with their patients to provide the best care

Because doctors tend to make decisions based on quick assessments, which may be biased, they should take time to offer and discuss treatment choices to patients and share the responsibility and control with them.

ncbi.nlm.nih.gov/pmc/articl...

2) Having a sense of control and being a patient expert depends, to some extent on possessing appropriate and accurate information.

The internet, social media etc means there is now greater access to information. It also means that people can be more easily exposed to misinformation.

This could mean the “serenity” prayer could be re-phrased

God, grant me the serenity to accept the things I cannot change,

YouTube to learn how to change the things I can,

and Google to know the difference.

That misinformation should spread is not simply down to the inaccuracy of the source, another factor may be the vulnerability of the reader to believing it.

PLEASE note, the following is simply an outline of what is mentioned in the literature. Purely that. It is up to you to consider it or dismiss it. Please don’t shoot the messenger.

Suggestibility this is where a person is inclined (and willing) to act on the actions or suggestions of others

Credulity is a person's willingness or ability to believe that a statement is true, especially on minimal or uncertain evidence. (Whether it’s true or not).

Gullibility is a tendency to be easily manipulated into believing something is true when it isn't. Credulity is closely related,

These appear interrelated and hopefully it can be seen that a more suggestible person will be then more credulous and gullible.

A person’s vulnerability to these may be a matter of personality, but a major factor is sleep deprivation.

Sleep deprivation, of even a relatively short period of time has been shown to increase a person’s suggestibility

psycnet.apa.org/record/1996...

Irrespective of whether you feel you have any control over insomnia, it may help to be aware of your own vulnerability.

Personally, I am better convinced by suggestions that can be supported by evidence.

A GAME (for 7 to ten people)

Print out the picture

FIND FRIENDS, FAMILY OR OTHERS WHO MAY BE WILLING TO TAKE PART IN THIS GAME.

Take ONE person aside

Step one :Tell them the game is called “The owl and the pussycat”

Tell them it’s a memory test and that you’re going to ask them to draw something from memory.

Step two :Show them the picture for about 30 seconds. At the same time recite –

“The Owl and the Pussycat went to sea

In a beautiful pea-green boat,

They took some honey, and plenty of money,

Wrapped up in a five pound note.”

(Edward Lear)

Step three : Then take the picture away and give the person a blank piece of paper and pencil and ask them to draw what they’ve just been looking at.

Step four : When they’ve finished, ask them what they’ve just drawn and write their answer and the number “1” on the back of their drawing.

Step five : tell the person not to discuss what they’ve done with anybody else.

Take the NEXT person aside.

Repeat steps 1 to 5 with 3 changes -

a) Show the person the previous person’s drawing, NOT the original

b) Allow them slightly less time to look at the drawing.

c) Write “2” on the back. (Or 3, 4, 5 etc)

DO THIS ANOTHER 8 TIMES

Compare the first person’s drawing and what they say they drew to the last person’s drawing and what they said they drew.

Explanation available by private message.

YOU MAY NEED TO INVITE A GROUP OF FRIENDS TO AN OWL AND PUSSYCAT DRAWING PARTY!

[pattio]

This is so well written and, for me, timely Manerva. Thank you for this.I have recently been focused on this topic of how I perceive my RLS symptoms. I am going to try this at our next family gathering and I will let you know.

[WideBody]

Thanks Manerva,

“God, grant me the serenity to accept the things I cannot change,

YouTube to learn how to change the things I can,

and Google to know the difference”

If you’re the author, I want to make sure I give correct attribution . It’s genius.

What is frustrating for me is I feel I can’t trust myself. I am not/was not the expert in my condition. In the beginning, I didn’t know if I was making this all up in my head. When I was taking DA drugs, I felt like I was a human experiment, talking to my wife, is this working or not?

Gabapentin was so iffy, is this working or not?

Heck, placebos have common side effects.

That’s the first problem. Is this all in my head?

The second problem is, I can’t explain or know how to describe my condition to the Doctor. In the absolute worst of times, I remember as I was leaving the Doctor and saying “This is bad.”

The Doctor asked, “Bad how? And I couldn’t explain it was pure torture.

I think writing done my issues and concerns prior to meeting with the Doctor helps and even then I am not good at it.

Thanks again for all you do. I hope you have time to play.

[Hidden in reply to WideBody]

Hi, Yes I believe it's true, placebos can have placebo side effects!

That aside, I'm sorry that you doubted yourself so much to the point that you couldn'l judge if a drug was working or not and would have to ask others.

I think it's a common enough problem that people find it difficult to articulate their symptoms and concerns when consulting a doctor. Then after, feel misunderstood.

Unfortunately, it is known that doctors do have what's called an "extended code" language. They know everyday conversational language on top of which they have a technical medical language. The problem therein is that we may sometimes say something which means something different to them, or they may say something and we don't have a clue what they mean.

It's peculiar, but I used to find myself nodding and agreeing even though I didn't know. I call this "overcompliance". I found myslef taking treatment witbout really knowing what the benefits or risks were, e.g. pramipexole!

The other thing that used to bother me was some doctors, perhaps not so much these days, have this "aura" of authority about them. An "I know better" attitude that can be visible in their tone and manner of speech, body posture etc.

I used to rehearse what I was going to say to a doctor before I actually saw one and still sometimes wouldn't actually a manage to say it!

I see numerous examples of this in this forum. Recently, I read of a lady with apparently very severe RLS went to her doctor mainly because of her insomnia and came away with a sleeping drug prescription. I'm guessing RLS wasn't even discussed.

Mis-communciation can lead to people feeling disempowered and even to misdiagnoses.

I don't think these things are entirely the responsibilty of the doctor. I am lucky because of my background knowledge, but I have also learned ways of dealing with this. and have taken on board that I am partly responsible for how a doctors consultation might go.

Perhaps I should give private tutorials on how to deal with a doctor : How much would you pay? I'm writing a lesson plan now

I still have problems at times. Recently I went to see my new "usual" GP. It was my first face to face with him, previously two telephone consultations.

He is my "new" DR since I requested a change from my previous one on the grounds that I had "no rapport" with her.

It's the little things that can throw you.

I was sat in the waiting room and the doctor pops his head round a corner and shouts out my FULL first name. You know, the name that nobody's called you since you were about thirteen years!

So, stripped of my title "Mister" and stripped of belonging to a family, i.e. my surname I entered "his domain". I admit I was flummoxed by this. Luckily I was only seeing him about a possbile ear infection/burst eardrum.

I got my own back a little. He got quite irritated at me repeatedly saying "pardon". I have since found out he is called Dr ED, presumably shortly for Edward. I had thought that if I see him again, I'll call him Edward.

The doctor-patient relationship shouldn't be about who can score the most brownie points however.

[WideBody in reply to Hidden]

Oh my, I silently commented "amen" on the pramipexole comment. It's clear that you and I have been down similar paths. You seem to be miles ahead. Thanks for the guidance.

And yes, "How to communicate RLS to your Doctor." Would be an awesome topic for a tutorial. It's amazing how much people have paid for lesser things.

[Sara_2611]

wow - a perfectly written tutorial Manerva . -Absolutely beautiful

[SueJohnson]

This is completely off the subject but I was wondering why you use the name Manerva since it is a feminine name and you are a male?

[Hidden in reply to SueJohnson]

M I N E R V A is the female name.

I am M A N E R V A.

[SueJohnson in reply to Hidden]

Ahh. When I searched for manerva, it gave me minerva and I didn't notice.

[Munroist]

Hi, I think that's very useful although I do feel it's a little one sided regarding Doctors. I'm sure everything you say does and can happen and it's happened to me occasionally especially the drip feed of information and what I'd call "limited disclosure" but I've also found that despite being certain of aspects of my condition, I was actually wrong and I needed the doctors and medical teams to help me see that. Experience proved them mostly right.I think it's really important to be aware of these things but not to let it colour your expectations of the interaction with your Doctor. You raise some really important points though such as the way you can be completely derailed when you start the conversation and forget most of what you wanted to say and I have found that making notes up front of the most important points can be very useful so you don't lose sight of them. For RLS these were the impact on sleep with broken nights causing fatigue and anxiety, the link with neuropathy and exercise and the desire not embark on medication until absolutely necessary. You need to go back to them during and at the end of the session to make sure you have them covered.

One particular aspect of RLS is that for many people it only happens in the evenings and night so you can feel pretty well as you sit there with the doctor, a lot of people won't experience pain and therefore it can lead you to underplay the impact of loss of sleep on your life. However the long term loss of sleep is an exceptionally serious condition with links to depression, accidents and longer term to dementia, as well as your daily dose of frustration so just can't be brushed off. Sleep deprivation is recognised form of torture.

I totally agree that we need to take responsibility for our conditions and do what we can to understand it so that we are not just passive recipients of health care, we are doing whatever we can to be well.

Lastly I really empathise with your discussion about being healthy, despite having RLS or other conditions. Our amazing bodies do have glitches and problems and we need to get away from the idea that something like RLS makes us "ill' as a category. It's something which can be managed for many people as part of normal life and while I absolutely recognise there are many people who have severe impacts I think it's often good to focus on what we can still do.

Thanks again for time you invest here and for raising these issues.

[Hidden in reply to Munroist]

The literature does put the onus for there being a good rapport on the doctor.

It's just my opinion, but I think that's right, if the rapport is an important part of treatment, then it's the responsibility of the doctor to promote it.

It is a point though. This doesn't mean patients should take no responsibility for communicating well. It's a different kind of resonsibility perhaps. It's not a professional responsibility, more about being responsible for ourselves.

If we, as patients (deliberately) create barriers to communication, it's only going to harm us! So why would you?

It's more likely to be ignorance, a lack of self-awareness or anxiety that leads to barriers.

One particular thing, in any circumstance really, is that it rarely helps to be aggressive. Nor does it help to be passive or over compliant. As patients it's best to be assertive.

As patients we also have to disclose things. Sometimes that's difficult because we're embarassed, fear harming others or think we may be badly judged.

We also have to listen, in turn, to the information a Dr may give us and not just pursue our own opinions of what we need, e.g. I often hear of patients demanding a specific treatment even if it's inappropriate.

Give me an antibiotic for my cold!

These are just my opinion, I haven't read anything in the literature.

[Munroist in reply to Hidden]

Agree. Doctors are really in a position of power as they not only have the medical training to help (maybe not always up to speed with RLS) but they are also are gateway to treatment and for there to be a successful outcome they have to listen to the patients issues and be up to date with current research . However it makes a big difference if the patient is clear on their issues and is aware of the treatment options and limitations as well the possibility of managing without medication by changes in behaviour, diet etc. My own experience so far is that my doctor has listened to what I have to say, understands that I don’t want to take drugs which were developed for other conditions and is supportive of looking at a iron infusion to try to address the root cause, and has referred me to a neurologist. I’m not certain I’d have the same result if I hadn’t been very well informed by this group.

[michaeledward]

Re RLS, I really don't have much to add to everything that has already been said. Myself, I think I may have had a minor case of RLS in my left foot approx. 1 year ago and my doctor prescribed B12. That seemed to take care of my problem. I do have a question though: Is RLS associated with CLL or CLL medications such as Ibrutinib?

[Hidden in reply to michaeledward]

I am sorry to hear about the CLL

Vitamin B12 can help with RLS if you had a deficiency. This is also true of vitamin D.

I'm afraid I know nothing about Ibrutinib, but I suspect both CLL itself and Ibrutinib could affect red blood cells and possibly iron metabolism.

Since RLS is due to an issue with iron, this could be a connection.

[michaeledward in reply to Hidden]

Thank you.

[Dougg]

Great article, Manerva! Thanks for sharing these helpful insights.

[hdsocfam]

Manerva, I am a first time caller long term listenter!! hahahah anyway... have you had or known acetominophen to be a trigger for someones RLS? My OB/Gyn wants me to take 1000mg daily at noon for a pelvic pain issue I am having?

[Hidden in reply to hdsocfam]

acetominophen itself isn't a trigger.

Some people claim it actually helps with their symptoms.