A disease? Give me a break

[jumpyowl]

She may be close-minded. The scary part is that there are doctors who think like that. It is still fairly common to think if that there is pain it is not RLS.

I have just been bowled out by a group leader that I am stupid to think that RLS is equivalent to paresthesia. I have never written that but we need to describe the weird sensation somehow and FORMICATION has not caught on yet.

She also thought that I underplayed the role of iron defficiency (she is iron deficient). Unfortunately, a relatively low portion of the patients admmit to having iron deficiency. I am certainly not one.

So here we go, we have to take the sunshine with the clouds.

BTW I agree with you on cannabalis being a political football. Part of our big War on Drugs, I believe.

[Mary]

Gee...I just signed on for the 1st time & was amazed at the emotions flying back & forth. Actually, I was saddened. Hopefully, this doesn't happen often. I'm going back to reading thru all the topics & messages now. Just had to say something...

[Mary]

Gee...I just signed on for the 1st time & was amazed at the emotions flying back & forth. Actually, I was saddened. Hopefully, this doesn't happen often. I'm going back to reading thru all the topics & messages now. Just had to say something...

[jan3213]

Hi Mary, it's Jan

I hope you don't judge us too harshly by what you just read! I'm afraid you saw the worst part of a good bunch of people (and I'm not talking about ME, necessarily, although I'm not horrible! Ha!). We were responding in total frustration, to someone who we should have probably ignored. She had a total right to her opinion, but I don't think her motives were pure, and, apparently, neither did anyone else. Occasionally, Mary, we get someone on this forum who just likes to argue and really doesn't care about RLS at all. WE DO BECAUSE WE ALL SUFFER FROM IT!!! So, you see, it's a sore (pardon the pun) subject with all of us!! I'm sorry you had to see that side of us. We are really nice, polite people. Please, do read all of the other posts. I think you will see a different side to all of us. WE are truly a family--we care for one another and we will care for you, too. We would have cared for guest or Arenia (was that her name?) Our objective in this forum is support, sharing of experience, advice (not to replace the advice of your own doctor, sharing of information. As I said, we are a family, and we welcome you. I hope you stay and become a part of us. We have people who are great researchers, a man who knows a lot about pharmaceuticals, and many of us are here to lend an ear or shoulder when you just can't take it anymore (and we've all been THERE betore)!

Take Care!
Jan

[pretzel]

Clearly Ariana Guest does have issues. But she raises a legitimate question IMO. Take alcoholism for instance. For years I had difficulty accepting that it was a "disease". I looked upon it more as a character defect. It is not a disease such as we know cancer or hepatitis or many others to be, but in the larger definition of the word it is certainly a disease as it causes "dis ease" to the body, mind and soul.

I would imagine her case of Restless Legs to be mild and she is probably most likely in the kind of denial I had about alcoholism at one time. I still have a problem labeling certain conditions of the body as "disease". For me, personally, only in the larger definition is Restless Leg a "disease". In the narrower sense it is a "disorder" in my way of thinking.

This is not to take away from the harm Restless Leg does to the body. We all know the harm lack of sleep can do to the body.

Cut our guest some slack. Her lack of years and maturity does show in her posts. She needs some time to come to terms with whatever is going on in her life that is giving her the bad attitude she is exhibiting. She wanted a debate. Let's be objective and give her one.

Two questions:

1) What is disease?
2) What is disorder?


I'll weigh in again later if anyone wants to stay with this topic.

Judy

[jan3213]

It's Jan

Hey, I have no problem calling it a disorder. If that's her argument, call it a disorder. It's really called Restless Leg Syndrome, so I guess we're all wrong literally. Ha! That's just semantics. All I know is, I started out just like she did, Pretzel. It was just a "little thing". That's usually how most things start how--USUALLY. Sometimes, like some forms of horrible things, like brain tumors, etc, they start out as big things, growing inside of you without you knowing it. I know RLS isn't cancer, I know it isn't terminal, but as I've said a zillion times in this forum, and as I would have said to Guest, who I DO have sympathy for if that's what she has, I would not wish RLS on my worst enemy. Unless you are VERY LUCKY it gets worse and worse and can drive you up the wall, sometimes even WITH medication--OFTEN WITH MEDICATION because you often have augmentation. RLS usually causes most people to suffer from sleep deprivation--a lot of us only get 3 to 4 hours of sleep a night, and that sleep is often interrupted at least 3 or 4 times a night. This doesn't happen overnight. RLS is progressive. One of our members is only 28 or 29 years old and is already using a cane because she has trouble walking. We have children who have it. So, I guess we tend to be a little defensive when someone says it really is nothing really bad. We are protective of each other because we see and hear the pain others go through and because we have enough trouble convincing the "outside" world that it is a problem without having to convince someone on this forum that it is a problem. I'm sorry you were offended. I hope you DO stick around. We ARE a group of nice people who CARE about OTHER people. We take turns "rowing the boat", because, you see, we are all IN the same boat! I hope you have a nice day.

Jan

[pretzel]

Hi, Jan. I don't know if you were addressing me, but I certainly was not offended. I'm in this boat for the long haul and was just looking for a little debate on the issue. Yeah, I agree with you. It is semantics. However it's labelled, it's not a nice thing to have. We are lucky to have this board.

[jan3213]

Hi Pretzel--(I was talking to you, hoping you'd feel the way you do!!!!!)

GOOD!! I'm really glad you feel that way!! I'm glad to have you on the forum, Pretzel!!! And, debate is what it's all about!!! Debate is a good thing!!! That's how we all learn. Me, especially. I'm 57, and I may be an "old dog", but I'm still learning! Ha!!!

HAVE A GOOD DAY!!!!! I think you are going to be a real asset!

Jan

[sardsy75]

I still have a problem labeling certain conditions of the body as "disease". For me, personally, only in the larger definition is Restless Leg a "disease". In the narrower sense it is a "disorder" in my way of thinking.

Two questions:

1) What is disease?
2) What is disorder?

Hi Pretzel/Judy

OK, my curiosity got the better of me and I looked up the definitions/meanings of 1) Disease; 2) Disorder; 3) Genetic Disorder and; 4) Syndrome and below is what I found:

1) Disease (noun): A pathological condition of a part, organ, or system of an organism relsulting from various causes such as infection, genetic defect, or environmental stress, and characterised by an identifiable group of signs and symptoms.

2) Disorder (noun): An ailment that affects the function of mind or body.

3) Genetic Disorder (noun): A pathological condition caused by an absent or defective gene or by a chromosomal aberration. Also called "hereditary disease" or "inherited disorder".

4) Syndrome (noun):
..... 4a) A group of symptoms that collectively indicate or characterize a disease or psychological disorder or other abnormal condition;
..... 4b) A complex of symptoms indicating the existence of an undesirable condition or quality;
..... 4c) A distinctive characteristic pattern of behaviour.


Looking at all four definitions ... RLS fits under ALL of them:


1) As a Disease - RLS is a patholgical condition of a system (i.e. central nervous system) resulting from various causes (take your pick of the causes really)

2) As a Disorder - RLS is an ailment that affect the function of both the mind and the body.

3) As a Genetic Disorder - In cases of PRIMARY RLS it is a pathological condition caused (possibly only - the "jury's" still out on this one) by a defective gene.

4) As a Syndrome - RLS is characterized by a group of symptoms that collectively indicate a disease or disorder or other abnormal condition.


I totally agree with your point of RLS being a "disease" in a larger definition yet a "disorder" in the narrower sense.

Medically I think it has been "labelled" correctly when it was named as a "syndrome", because when you look at it in the nitty gritty sense of the definition of a syndrome, that's what it is (think that made sense LOL).

Well, that's my take on it anyway.

[jumpyowl]

I was the first one to state that we should not waste time with this silly "debate" because it is not really a debate. Well, I just cannot resist commenting on the further developments because it has been done very skillfully by pretzel, who appears to be just the opposite of Ariana. My comments in the quote are in blue.

...Okay I clearly have "RLS". .. I definitely have all the symptoms of "RLS".

... You keep calling it a disease. Cancer is a disease. Needing to move your legs constantly? Com'on! Give me a break! ...

I really do not think this is a debate on semantics! It is clearly just a way to belittle this affliction and the people "blessed" with it.

I've had this my whole life and it totally isn't a big deal..... Ditto!

I think it's INSANE to want to give yourself medication JUST for this. I mean why would you take a medication unless it's absolutely necessary?!?! I also don't get where people get off calling this a disease. Has anyone died from bouncing their leg too much? No.

Is it really all that important to seek treatment? No. She just called of us INSANE based on ridiculous arguments. Just because she believes that unless you drop dead from an affliction you should just ignore it? None of her statement qualifies even as an argument. Certainly does not give her the right to make vicious ridicule out of millions of suffering people. .

I mean, I can't believe that you guys would go to the doctor's for this! I mean, that's just wasting the Doctor's precious time when he could be treating a REAL disease. The doctor's job is to help afflicted people and spare them from further suffering. What is your purpose in life? What is your tirade attempting to achieve?.

That is just how I feel. Feel free to debate me. Come on, Ariana, this does not qualify as a debate!]I am not trying to be offensive [well, you achieved it without trying too hard!] but these are just my gut reactions and opinions.

She clearly needed a response for this attack to become an enjoyable pastime. So she shot off another tirade not quite that offensive but still vitriolic enough. Her third post stated that she had not called anyone names. Well, to me being called insane, a wimp, and a hypochondriac by implication are bad enough names. Again, ask yourself, what is she trying to achieve??? Save overworked doctors from hypochondriacs???

Now the real reason I write is a post from Pretzel, who (if different from Ariana) is quite a bit more clever and definitely more compassionate (toward Ariana).

Clearly Ariana Guest does have issues. But she raises a legitimate question IMO. [Well, this is where we disagree. If she did raise one she is not aware of it. It may have pushed a button in your emotional make-up that responded to a few words here and there, but it is your reaction, probably far from her intentions.] Take alcoholism for instance. For years I had difficulty accepting that it was a "disease". I looked upon it more as a character defect. It is not a disease such as we know cancer or hepatitis or many others to be, but in the larger definition of the word it is certainly a disease as it causes "dis ease" to the body, mind and soul.

I would imagine her case of Restless Legs to be mild and she is probably most likely in the kind of denial I had about alcoholism at one time. I still have a problem labeling certain conditions of the body as "disease". For me, personally, only in the larger definition is Restless Leg a "disease". In the narrower sense it is a "disorder" in my way of thinking. Pretzel, I believe you, it sounds rational on alcoholism. But not on RLS, I beg to differ.

This is not to take away from the harm Restless Leg does to the body. We all know the harm lack of sleep can do to the body.

Cut our guest some slack. Why??? Her lack of years and maturity does show in her posts. It is not lack of years, pretzel. Were you vicious and cruel when you were young? She needs some time to come to terms with whatever is going on in her life that is giving her the bad attitude she is exhibiting. Fine, she has all the time in the world provided she lives long enough. But is it too much to ask her that in the meantime she should stop advertising her gut feelings and hurting people? She wanted a debate. Let's be objective and give her one. Now this underlined statement is the main reason I spent all this time writing this post. I already pointed out that she did not want a debate about the meaning of disease or disorder. But what is this "let us be objective"???? We are the ones who are being objective (except where people emotionally reacted to this abuse). So what it is exactly that we should give her??? Should we tell her that it is time to be objective about her gut reactions?

Two questions:

1) What is disease?
2) What is disorder?

If anyone interested one should take a look at Nadia's excellent treatise.

Well, thanks for letting me vent.

[pretzel]

Excellent, Nadia!

Jumpy, thankfully, I can say truthfully that I have never intentionally been cruel or vicious. My primary purpose for my first post on this thread was to address a question that might possibly be in the minds of some guests or readers of this board. I have no problem at all calling RLS a disease. It's just not a disease in the way cancer and the like is. My purpose in using alcoholism as an example was to illustrate that I thought at one time it was not a disease. And it certainly is not in the way, again, cancer is, but it served it's purpose as an example.

Yes, I feel compassion for Ariana. I don't know how bad her physical condition is, but obviously the girl is hurting. She needs a little sympathy and understanding. I hope she returns to read Nadia's excellent post. It's the best post on this thread.

Judy

[Anonymous]

Hello Guest, I now live a somewhat "normal" life with the help of several medications. I could not travel more that a few miles without rls making my life hell. I did not sleep and was exhausted every morning. I dreaded bedtime. The thought made me sick. That is just a few symptoms of my "disease". You cannot have rls and know it is anything but a disease.

[Anonymous]

This is my second post. I think rls is a "big deal". It has disrupted my life for many years. I am 48 now and have just got this under control the past 3 yrs. I now take stalevo every 5-6 hrs starting when I get up, neurontin 600mg three times a day, mirapex 0.5mg and restoril 30mg at bedtime. I still have my bad days and nights but more good ones now. I can travel now and go to the movies. Glad to meet you all! Would like to hear from anyone.

[nephriticus]

I looked up the definitions/meanings of 1) Disease; 2) Disorder; 3) Genetic Disorder and; 4) Syndrome

Nadia,

You forgot number 5.

5) Bummer noun: Something bad or unpleasant
Webster's Third New International Dictionary, unabridged

[Sara]

Amen, Neph, I liked your addition to the definitions.

Welcome, Laurie, I'm so glad you're getting relief now. Severe RLS is definitely a BIG DEAL! Even the moderate RLS I have can alter your life more than you realize sometimes. Nice to have you on-board here!

Take care everybody--
Sara