Restless Legs Syndrome (RLS) Discussion Board

I'm sure all of us have had bad experiences with doctors; bad bedside manners, lack of knowledge etc that we are probably quite numb - or rather I am.

Still, I was really momentarily stunned by a doctor who had really poor bedside manners - and subsequently just a great sense of outrage with how she dismisses the experience of RLS, and how patronizing she was....

just as an example of some of the things she said - "so what kind of suffering do you have?"; "it's only an emergency if you are bleeding'" - she obviously received a massive scolding from me :p

I have come to accept the diagnosis (or rather I thought I have), but realise that the insensitivity of others towards what I would term as "invisible illness" triggers immense frustration and anger.


i wonder actually, do people disclose their diagnosis to others (other than close friends and family)? and how do you manage people's reactions? or do you just come to an acceptance that no one would really understand, even healthcare providers?

i wonder actually, do people disclose their diagnosis to others

When the time seems right, I talk about my RLS as a way to educate others about the disease. It is pretty obvious that I am a runner, so the first question is usually about whether that is why I run (the answer is no). When I tell them that the prevalence of RLS is thought to be between 10 and 15% of the population in the US, that usually prompts a reply along the lines of "I have that" or "I have a friend who is like that".

As for doctors, the ones who are willing to learn will usually seem interested. I took the Foundation surgery info with me when I had hand surgery earlier this year. The anesthesiologist said that he would not be using any of the meds listed as bad, and then asked to keep the page and thanked me for bringing it in. I also had a neurologist who evaluates me each year as part of an Alzheimer study where I am a control subject, tell me that she did not receive any education about RLS while in school and then she said that she enjoys my annual visit because she learns something more about RLS each year.

Of course there are also the ignorant, unfeeling doctors (usually with some level of god complex) that we have all run into. Those are the ones that I put onto my list to avoid in the future.

Some doctors just don't get it. I think they're motivated by prestige and the desire to make money rather than to care for patients and help relieve suffering. I good doctor is literally worth their weight in gold.

I tell others that I have Willis-Ekbom disease. They'll ask what it is, and I'll explain that it's a sensori-motor disorder - a movement disorder with a sensory component, and I'll describe the symptoms. Some people will regcognize the description and ask if it's RLS. Most won't, and only after I've given the new name and described the disease will I say that the old name is restless legs syndrome. If you say RLS first, they have pre-conceived notions of what it is - like someone habitually jerking their knee up and down when they're sitting.

I'll explain that the name was changed because the disease is systemic; it affects more than just legs, it involves imbalances of iron in the brain, the circadian system is out of whack, we have a heightened auditory startle reflex (sudden noises are more likely to make us jump) and slowed blink reflexes, and the muscles in our extremities tend to be low in oxygen.

With doctors, it's a bit different. I haven't had to explain it to a new doctor for a long time now. I do remember complaining to one doctor, who was filing in for my regular doctor, that no one bothered to ask what it was like to have this disease. Well, he sat back, got comfortable, and asked me to tell him. I wasn't ready with an answer! I managed something, but it would be good to have the words ready in your head to answer questions like that.

Oh, I forgot: I usually mention that 10-15% of the population has WED, but it varies in intensity, so that most people who have it don't really have a problem. It bothers them every now and then, and only lasts a short while. But some of us - maybe 2% of the population - have severe cases, where it prevents sleep to the point that daytime functioning is seriously impacted.

I feel it's important to mention that the disease varies in intensity because there are people who say "I have that - it's no big deal". They make the mistake of thinking that everyone's severity is the same as their own.

Air travel is common among a number of my friends and work colleagues before I retired. For them, I would ask about their reaction to being assigned the middle or window seat on an airplane. More frequently than I would like, the answer was one of fear, similar to what I feel when I don't get a seat on the aisle. A couple of questions later, I would often be suggesting that they mention it to their doctor at their next visit. Knowledge of RLS in the medical community and the population at large is so severely lacking that many people have it and don't know. I suffered for more than 30 years before I was diagnosed and when I think back to all the discomfort that I suffered while traveling for work, well, that is when I start to get upset.

And it's STILL trivialized by doctors who don't know. Never mind all the non-doctors. The name honestly is part of the problem. Remember that survey that was done, - - I have just spent some time searching for our discussions on it and haven;t found it so maybe my memory is faulty about the details - Steve, can you recall it? Or Ann or Betty?

The gist of it is that two groups of people - doctors, I think - were asked to fill out a questionnaire listing symptoms of a disease, or maybe they were asked just to read a description of the symptoms of a disease, and the disease was something with two names. I think the disease was WED/RLS so I'll go with that. A the end of the questionnaire, they were asked to state whether they thought they had the disease. The only difference between the two groups was that one group got a survey in which the name of the disease was Restless Legs Syndrome, and the other got the identical survey except the name of the disease was Willis-Ekbom Disease. All the questions and other information was the same. And a significantly greater proportion of people thought they had the disease when it was named Restless Legs Syndrome.

The point being made was that disease names have a dramatic impact on how people (doctors) view a disease.

My memory is like Swiss cheese...and the holes are getting larger...

Sorry, I don't remember that survey at all, so there is a good chance that it was about the time that I was diagnosed and first joined the board. Hopefully Betty will remember.

I don't recall that particular survey. When I get a chance will try a bit of searching/googling.

badnights wrote:I'll explain that the name was changed because the disease is systemic; it affects more than just legs, it involves imbalances of iron in the brain, the circadian system is out of whack, we have a heightened auditory startle reflex (sudden noises are more likely to make us jump) and slowed blink reflexes, and the muscles in our extremities tend to be low in oxygen.

The information on heightened auditory startle reflex, slowed blink reflexes and low oxygen in extremities muscle is new to me! more things to learn about the condition

I agree about the name. I actually asked my neurologist to change it into the proper name WED - he declined on the grounds that WED is so obscure sounding that doctors may not even look at it/consider it as part of review of systems during medical reviews......

@fuz - my GP wanted to use WED for me but the code-table term in the database can't be altered by the unwashed masses , so she has to use RLS.

Definitely a lot of wierd one-offs about WED out there - I came across the oddballs like the auditory startle reflex when I first started looking into this disease. I don't have the energy anymore. The hypoxia stuff is fairly recent and I bet Steve or Ann could quickly point you to it.

@my fellow mods Re that darn survey. I recall having a short conversation with Ann about it. I perhaps am not remembering the details needed to find it. oh well. The point was that, perhaps by a Rose by the name of Stinkweed would not, after all, smell so sweet (and doctors shouldn't try to self-diagnose - hahah).

For the hypoxia, the best source of information was the Foundation webinar titled "Iron, Hypoxy and RLS" presented by two researchers at Penn State Univ on Oct 14, 2016.

I have the auditory startle reflex. I didn't know it had a name! I haven't always been like that, just since my rls has gotten worse. I jump at noises that wouldn't bother most people. My husband laughs, nicely, and is puzzled. Now I can tell him why. I'm glad to have found this out.

This happens to me also. A door opening unexpectedly makes me jump inches.