Progressive?

For everything and anything else not covered in the other RLS/WED sections.
jcox
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Progressive?

Postby jcox » Tue Jun 22, 2004 1:17 pm

I am new to this board, but not necessarily to RLS. Went through a period several years ago, all kinds of tests (MRI, EMG, etc.and they told me everything it was not, including not neurological. Also went through several drug regimens, but nothing seemed to work. They never could tell me what it was. Right now it is totally untreated and seems to be getting steadily worse. Has anyone read, heard, talked about or think that RLS may be progressive or is it some spiraling effect because the symptoms seem to be worse the less you sleep, the less you sleep, the worse the symptoms get, etc,etc, any ideas would be great.

becat
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Hi there

Postby becat » Thu Jun 24, 2004 3:38 am

Hi Jox,
Welcome to our club.
Yes, RLS is a progressive problem. If you started out life with growing pains, then you'll see your symptoms start earlier in adulthood. Some people don't show signs until midlife or later. However, I am a lifer and only had about 8-9 break before it came back with a chip on it's shoulder.
I'm so glad you found us. We all take turns handing out a shoulder to share, an ear to listen, and a place to educate ourselves. You never know when you'll be a help to someone here......or someone here helps you.
We've got some great people here that are going to welcome your comments and questions.
We're in this thing together,
You keep us in the loop.

jcox
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progressive

Postby jcox » Thu Jun 24, 2004 3:52 am

That is not exactly what I wanted to hear, but had pretty much figured out. Thanks for the help. I am a former perimedic and now a mental helth professional, so I am very familiar with diagnoses and meds and their effects. I will probably be looking inhere quite often. Thanks for the help.

jumpyowl
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Welcome!

Postby jumpyowl » Sat Jun 26, 2004 1:05 pm

Jcox, what is it that you wanted to hear? :?:

You mentioned that you have RLS after many negative neurological and other tests. However, you did not mention how you came to the conclusion that you have RLS? What are your symptoms? :?:

What were those treatments that did not help you? It is hard to offer helpful advice to someone when the specific data is missing. :?

We try to help each other by sharing information about our experiences. I hope you join us. :)
Jumpy Owl

jcox
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Specifics

Postby jcox » Sat Jun 26, 2004 7:02 pm

I mentioned I had an MRI, EMG, and some blood work done, all of it seemed to come out supposedly normal. I also had a full eye exam because they were trying many different things. At one point MS was mentioned. I had been on several different antidpressants and quinine at one point. It would seem to work for a very short time and then symptoms would come back. My symptoms include a creepy feeling like bugs on me in my legs and feet and arms, a constant urge to move, especially when tired, some call these nervous habits. Especially when trying to go to sleep I will practically kick myself in the chest with my legs, I also have invountary movements in my fingers, hands, and sometimes in the facial and eyelid muscles. Quite often I have what I call muscles twitches, muscles firing and jumping, but will not cause limb movement like in my arms, legs and feet. There is quite a lot of pain involved but not necessarily in the movements themslves. I also seem to have related GI problems like excessive gas, belching and probably even IBS. They all seem to be progressive and especailly within the last month or so, I think I average about 3 or 4 hours of sleep per night and day time naps are pretty much out because it takes me so long just to fall asleep or because of work issues. Does all of this help. RLS has been mentioned by one doc, but I pretty much came to it on my own.

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jan3213
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Progressive

Postby jan3213 » Thu Jul 01, 2004 10:17 am

Hi

My name is Jan and I just noticed your post. I have a few questions that might be helpful. I've had RLS for approx. 15 or 20 years (you lose count). Does walking seems to relieve your symptoms? Does your pain feel like a deep muscle ache? Do you have trouble sitting in a chair, riding in a car, sitting through a movie, etc.? Do you notice that your symptoms seems to worsen at night? The feeling of "bugs in your legs" sounds like what I feel. Do you dread going to bed? I hate to say this, but if you don't now, you probably will. If you have RLS, you need to get a good doctor, a neurologist, who really knows about RLS and will listen. That's the first step. There are meds that will help and you can get on the right combination and get relief! And don't listen to anyone who may tell you that this isn't any big deal!!! It is!! When you can't sleep, it affects your life tremendously!! And with RLS, you can't sleep!!! I once went almost three months with very little sleep. I don't know how my family stod me!! Take care and good luck!! Keep us posted!

Jan

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jan3213
Posts: 1706
Joined: Wed May 26, 2004 8:46 pm
Location: Illinois

Progressive

Postby jan3213 » Thu Jul 01, 2004 10:22 am

Hi

My name is Jan and I just noticed your post. I have a few questions that might be helpful. I've had RLS for approx. 15 or 20 years (you lose count). Does walking seems to relieve your symptoms? Does your pain feel like a deep muscle ache? Do you have trouble sitting in a chair, riding in a car, sitting through a movie, etc.? Do you notice that your symptoms seems to worsen at night? The feeling of "bugs in your legs" sounds like what I feel. Do you dread going to bed? I hate to say this, but if you don't now, you probably will. If you have RLS, you need to get a good doctor, a neurologist, who really knows about RLS and will listen. That's the first step. There are meds that will help and you can get on the right combination and get relief! And don't listen to anyone who may tell you that this isn't any big deal!!! It is!! When you can't sleep, it affects your life tremendously!! And with RLS, you can't sleep!!! I once went almost three months with very little sleep. I don't know how my family stod me!! Take care and good luck!! Keep us posted!

Jan

jumpyowl
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RLS and what else?

Postby jumpyowl » Thu Jul 01, 2004 1:23 pm

jCox: you write among others:

There is quite a lot of pain involved but not necessarily in the movements themselves. I also seem to have related GI problems like excessive gas, belching and probably even IBS. They all seem to be progressive and especially within the last month or so...


I also have invountary movements in my fingers, hands, and sometimes in the facial and eyelid muscles. Quite often I have what I call muscles twitches, muscles firing and jumping, but will not cause limb movement like in my arms, legs and feet.


You probably have RLS/PLMD in some form but I suspect that you may have something else. Those involuntary muscle movement in the face and upper part of the body (type of tics?) are especially suspicious. :shock:

The next question is what medications are you taking? :?:

You mention antidepressants!? It is very much in vogue to prescribe these medications but I suspect they may be responsible for at least some of your problems. They are known to aggrevate RLS! :shock:

A sleep test (polysomnography) would confirm what type of periodic limb movement you have. However, I would suspect that you need a good work-up at some place such as the Mayo Clinic.

Are you under nervous tension? Would you classify yourself as a type A personality? How about your vital signs? Is you blood pressure is fairly stable? Your pulse rate?

No question you have to stabilize your nervous system. The question is how to do it? Traditional RLS medications such as anti-Parkinson or anti-convulsive medications may be oil onto the fire.
Jumpy Owl

Anonymous

Postby Anonymous » Sun Jul 04, 2004 1:26 am

My husband and I went to my first RLS support group approx 6 years ago, we were the only ones there under the age of 40, my husband had a very discouraged look on his face and then realized I would not get any better with age :D


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