LIFE WITH RLS

[jumpyowl]

LIFE WITH RLS

Diagnosis & management of RLS as perceived by the patients

Frank J. Holly, Ph.D and 78 participants in the survey

There appears to be a huge gap in communication and a resulting confusion between health care providers and patients suffering from the Restless Leg Syndrome. Quite often such patients are diagnosed late, 10 to 30 years after the symptoms appear, often in childhood. It takes visits to several doctors and several years before correct diagnosis is made. Self diagnosis by the patients is not rare.

It is suspected that correct diagnosis in some cases may never be made. The complaints are ignored or dibelieved, the symptoms are untreated or mistreated. Since there are no drugs approved by the FDA for the treatment of RLS, even when the affliction is recognized, many physicians are reluctant to prescribe drugs that are known to be helpful in such cases. First, they have to be prescribed for off label use and the primary care takers are often not familiar prescribing such drugs as anti-Parkinson or anti-epileptic medications.

It is amazing what a large fraction of patients either receive no pharmaceutical treatment or are not treated properly. Effective treatments for such a mysterious disease require a high degree of doctor–patient co-operation, careful experimentation and titration that involves careful follow up and frequent visits as well as considerable input by the patients. Such conditions are often not met.

As a result, some patients with severe (refractory) RLS are characterized by "hopelessness* since they experience a high degree morbidity that requires major life styles changes. All this due to a disease that seldom can seldom be confirmed by objective tests. Even though the patients often do not appear sick, their hopelessness is clear and often misdiagnosed as clinical depression. It can result in enhanced anxiety and even panic attacks.

It is now acknowledged that pain is often present in RLS. That does not mean, unfortunately, that such a pain is treated. Even if there is no explicit pain, intense paresthesia makes resting or relaxation impossible and often result in insomnia. Associated Periodic Limb Movement Disorder, often present, usually interfers with restful restorative sleep. insomnia.

After six months of intensively participating on the Discussion Board of the RLS Foundation and sharing experiences with other enthusiastic and helpful members, this author learned of their conditions, their treatments if any, and the degree of morbidity of their conditions. Perhaps due to the fact that the care takers have no time to listen to the complaints of RLS patients, which, to the uninitiated, can even sound unlikely or bizarre, many of the participants in the friendly and supportive atmosphere of the Discussion Board were able to candidly reveal all relevant information, and indeed their whole saga. This provided an unexpectedly rich source of information, to which health care professionals have no access.

All such information, willingly provided by the patients, served as a base to construct a four page questionnaire. These were sent to several hundred patients all over the world. This document (enclosed) was designed to obtain the following information.

Gender, age, and location of the patient.

Their symptoms including of the description of the unpleasant sensations and their location.

Presence of pain, if any, its type and also its location.

Other health problems thought to be related to the low dopamine levels in RLS (such as periodic limb movement, its intensity, insomnia, and hormonal deficiency).

Unrelated health problems other than RLS (sleep apnea, narcolepsy/cataplexy, fibromyalgia, chronic fatigue syndrome, drug and alcohol dependency, and others.

Diagnosis:. When and how was RLS first diagnosed including diagnostic tests conducted).

Medical Care. The degree of co-operation of the family physician.

The severity of RLS as mild (intermittent), daily (moderate), and refractory (severe). .

Past medications (non-pharmaceutical and pharmaceutical), .their efficacy and side effects. Augmentation or rebound effect. Antidepressant medication taken if any (especially dopamine antagonists) .

Present treatment modalities if any. Also type of atidepressant or other related medications.

Denial of Proper Care. Refusal of pertinent medication to the patients.

Bodily Changes: in body weights, in vital signs, and sleeping habits.

Exacerbating factors and habits in the patient’s life that would exacerbate their symptoms.

Quality of life (degree of morbidity) at three levels (major, moderate, and slight). (A short biography of their often life-long experiences was often provided.)

Familial connections of the affliction, a list of the blood relatives, who were diagnosed with or suspected of having RLS.

The results of this survey will be analyzed and presented as supported by the relative number of the patients.

The concluding remarks will emphasize some of the findings of interest that appear to be heretofore unrecognized. They, however, should be important to patients, health care providers and pharmaceutical companies.

____________________________________________________________
* named and defined by Becat, a F/39 patient from Plano, TX.

[jumpyowl]

Well, I had to write something before all the results are in. So the draft is incomplete, the results are missing.

Still even after only 26 completed forms one can see that the results will be significant and informative, some will come as a surpise!

And I hope that they will do some good.

If I could ask you for some more help, please make some suggestions how this paper can be improved and also edit the English. E.g, Elfrieda could make the sentences much simpler and smoother, if she were that kind to lend sa helping hand.

So need some critique here gals and guys,

[jumpyowl]

Bump!!! :roll:

[becat]

I like it. Thank you for the mention, but really .

On a more serious note. I might only like to see it mentioned that treatment is as individual, being different for everyone. Thus adding to the confusion on the medical community.
I would agree that they (doctors) don't have the time to listen. However, when they do not listen, treatment is handled like most things. "this is what we normally do for that." Our uncommon reactions to common drugs makes it harder for docs. to treat us commonly. Ex. I have allergies, but RLS warrants that I choose my pharm. treatment carefully.

We simply have to more educated about our bodies and more educated about treatments that are offered. Then Docs. take it personal when we correct them about medications, dosages, or the direction our treatment. My God Man, they have gone to school, they have degrees!!!!!!!!! But they don't live our lives or in our bodies.
When we have a lifetime of getting worse ahead of us, it only seems fair that as educated RLS suffers, we take charge.
Sorry, babble...............I like it Jumpyowl, thank you for your intense hard work. I hope you keep getting more questionaires back. As many as possible.
Hugs to all.

[jumpyowl]

I am glad you like it. Keep in mind that this is just the introduction. The meaty part will be the results and their interpretation!

Doctors do not like to hear that everybody is different but if it is true, we will come up with fifty different treatment that works! One for each patient!

Anyway, if something similar comes up, this will be discussed thoroughly. Also the relationship of RLS to other afflictions.

I can barely wait to see those extra qu's, because I am itching to get started.

[jan3213]

Jumpy, it's Jan

I think you have done a fabulous job, and I'm "not fluffing your pillow", as my husband would say!!! I think you have summarized everything very well! I'm sorry I haven't answered your post sooner; you have done such hard work, I should have been right on top of it--it wasn't too much for you to ask! Although I haven't seen other people's Lifestyle's Change essays, except Clara's, which was wonderful, compared to hers, mine was perphaps pretty boring. However, RLS has effected my life immensely in everyday activities, such as driving. I know you mentioned pain, but, I'm sorry, I don't recall you mentioning such things as driving. If you did, I'm sorry. I have almost had accidents because of excess sleepiness due to the fact that I don't get enough sleep because of RLS. There are statistics proving that sleepiness causes more accidents than drunk driving, and I mentioned in my "essay" that RLS can make one feel like a virtual prisoner sometimes because I, for one, am afraid to drive for very long distances. And, I DO worry about the fact that my pain causes my legs to become stiff and makes it hard for me to walk and I'm only 57. I don't dwell on the the future, but I DON'T want to end up a burden on my husband. These are things that I think might be added, if you have not already done so. Once again, I think you and Becat have done a maginficant job and I want to thank you so much on behalf of myself and all of us who suffer! I'm proud to know you both.

Jan

[jan3213]

Hi Jumpy

I re-read your proposed article and I would like to revise part of my "critique". I think, perhaps, you will probably cover most of my concerns under Quality of Life. You may not specifically mention what I did, but I'm sure you will do more than an adequate job of getting any point I may have across. In other words, RLS effects us all in so many ways, it's impossible to list them all. Once again, you did a great job and I'm so glad you will be representing all of us! Thank you, thank you, thank you!

Jan

[nephriticus]

I've read in a goodly number of posts in these forums whereby the general population of doctors are rhetorically beaten up for not listening. I've had no incidences of a 'deaf' doctor that I can recall. However, the following ancedote might explain why doctors have selective hearing.

Years ago my mother did housework for a physician in a small town. Everyday the doctor would come home to a lunch prepared by his wife. My mother was dumfounded that the learned man religiously watched the soap opera General Hospital while eating lunch. My mother could restrain herself only so long before she asked: "Dr. P***, you are an educated man. Why on earth do you watch that silly soap opera?" The good doctor replied, "That's easy. This way I know what symptoms I can expect to hear the next day."

Surely most doctors secretly long for hypochondriacs to be branded on their foreheads with a capital 'H' so they can differentiate from patients with valid complaints.

[becat]

HI Nephriticus,

A well taken point.
I would be silly not to think that you are absolutley right. Our present social state is one of "give me a pill to cure me". And you put it ever so nicely, to me remind me that I should expect to prove myself, as well as my Doctors proving themselves to me.
I promise to remember to cut my specialist some slack at our next appt..
I swear it here that I will try.
And might I add, that my GP of 17 yrs., might not know tons about RLS, but he does know me. I'm more than blessed to have him as my gatekeeper.

[jan3213]

Hi Nephriticus, it's Jan

I don't mean to be argumentative. You most certaintly have every right to your opinion and you probably have had mostly positive experiences with doctors. And, I AM NOT a hypochondriac. I rarely go to the doctor. In fact, before RLS reared its ugly head, I went once a year for the usual female examination. However, I have had, fairly recently, an experience where my previous GP failed to diagnosis a problem and WOULD NOT listen to me (even though I know my body and KNEW something was wrong). He gave me several tests which were negative. Then he asked me if I wanted any other tests taken. After deciding not to answer him with a "sick" joke answer, I went to another doctor, who quickly found the problem, which required surgery. I am now going to another GP, who DOES listen. Doctors are only human. They are not God, they are not perfect. This was not the only time this particular doctor misdiagnosed a problem. But it WAS the first time the problem could have had serious consequences. This doctor had a bad habit of overbooking and making his patients feel as if they were "bothering" him, when in fact they were "hiring" him to care for them. I now go to a wonderful doctor who is very busy. I don't mind waiting in her waiting room while she is seeing someone else because I know she is taking her time with a patient like she will with me. She's not perfect, either. But, she cares and she listens. That's the difference.

Jan

[nephriticus]

Hi Jan,

I was not implying anyone here was a "hypo". I was merely presenting the difficulties doctors must endure to separate fact from fiction. I have several acquaintances whom I would term "hypo's". I am not aware that I have encountered any in this forum. The people lingering in this website have real problems, with perhaps one exception. That would be me. As long as my prescription works as it has been my quality of life is enviable by the rest of you.

I did say that I never recalled a doctor not listening. I will have to retract that. There was an incident that two doctors disbelieved what I was telling them. A third doctor reluctantly accepted what I was saying and performed an operative procedure. He discovered I was correct.

[jan3213]

Hi Nephriticus, it's Jan

Like I said to you one time, I'm going to have to memorize how to spell your name! Ha! I didn't mean to argue with you , and I really hope you didn't take it that way! We're all entitled to our opinions. And, I didn't think you were referring to me being a "hypo" either. I was just trying to make a point, and you got it!! So did I. You are right about doctors having to put up with some patients, I'm sure about that. But, as a friend of mine once said, "there are two sides to every pancake". What a quaint, midwestern expression! Ha! But, I do think, in my town, more often than not, most doctors are more concerned with the number of patients they can see in a day rather than the number of patients they can help in a day. That's unfortunate, isn't it?

Have a good night!

Jan

[claradragon]

Surely most doctors secretly long for hypochondriacs to be branded on their foreheads with a capital 'H' so they can differentiate from patients with valid complaints.

Unfortunatly from "the other side of the pancake" when one has been dismissed and branded with an 'H' incorrectly by a doctor at an early age, that doctor and every other one after becomes deaf!

Only by sheer persistance and determination did I finally get my current doctors to listen, others aren't so lucky!!!

Claradragon

[jumpyowl]

---------------MY CREDO----------------------

I am trying to be objective. However, when one is aiming to find out the truth, some of the questions may appear pointed. One's experience is anecdotal but all important to oneself, incuding a few other cases one hears about, is still andecdotal.

Now when a larger number of people replies to a survey some basis for objectivity is returned, even if the sample is not random. The willingness to answer is already a type of selection.

Whatever I said in the introduction is not etched in stone. If the collected data comes up with 85% saying that my doctor has been very supportive, even if not an expert on RLS, still he/she tried to do the best for me, this paper will take a completely different direction and will put the blame where it fits.

The fact still is that are a large number of patients out there that are miserable and not obtaing help which is available. I am looking for a cause for that. Unless the cause is known we do not know how to fix the problem.

I do not have an agenda of blaming anyone. I am trying to fix it where it leaks.

[sardsy75]

Dr K has been my family's "gatekeeper" since 1989.

My father and sister have remained relatively healthy throughout their lives, my mother and I have not.

When I schedule an appointment with Dr K, it is usually when I am way beyond the "sick & dying" phase of the well known term "don't bother the Doc unless you're sick, dead or dying". I usually get a reprimand from Dr K for leaving it so long, but on the flip side he knows I'm not the type who rocks up on his doorstep everytime I get a "headache".

Dr K has gotten to know me so well over the past 15 years that HE KNOWS I do not expect "Miracle Cures" from him. All I want is a little help with relief; and that he does quite gladly.

I personally know numerous patients of Dr K who constantly berate him for not providing them with a "cure" for their ailments and that really gets up my nose, particularly when those patients know full well that there is no cure! GP's are just that General Practicioners; they are not the be-all and end-all walking encylopeadias of medical knowledge! Thats where our specialists and researchers come in.

The more we can provide them with useful information, such as our questionnaire results, the more they will "listen" to us. It is no use screaming and stomping because there is no cure, they'll just tune us out (or as my dad would put it, switch on their "selective hearing"!).