Is there anyone like me?

Whether new to RLS/WED or new to the site, we welcome you and invite you to share your history and experiences with RLS/WED, introduce yourself, and ask questions. Successful treatment starts with a solid understanding of this disease.
Elfrieda
Posts: 32
Joined: Fri Aug 27, 2004 8:41 pm
Location: dc

alien attack

Postby Elfrieda » Mon Aug 30, 2004 1:42 am

No, it's not anxiety or a panic attack. This is the kind of feelings that I have most of the time that my doctor has diagnosed as restless body syndrome/restless leg syndrome. Now you can see why I am confused.

Elfrieda :?

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

Confused!

Postby jan3213 » Mon Aug 30, 2004 2:05 am

It's Jan

Yes, I sure can see why you are confused! I would be too. You must be going nuts! When I told you not to give up, I was referring to everything--the board, this crazy RLS thing........... I know I've said this before (I'm sorry if I make your eyes glaze over, Elfrieda, I seem to do that to people), but, even though I've had it so long, I keep finding out more and more about it--more and more ways it can effect my body that I never thought of asking my doctor about. I have never known anyone personally who has it, so I never had anyone to talk to about RLS until I joined this discussion group. Now, I've started thinking, so THAT'S what caused this or that. I guess I say all that to say this. RLS is still quite a mystery, and what you are describing may very well be a symptom, but not a common one. At any rate, it sounds awful and I'm so sorry you have to deal with it. I hope you have a good night! Try to get some rest!

Take care!

Jan
No one is alone who had friends.

Elfrieda
Posts: 32
Joined: Fri Aug 27, 2004 8:41 pm
Location: dc

I was a bad girl

Postby Elfrieda » Thu Sep 02, 2004 12:46 am

and it was great! :lol:

I really haven't had much confidence in my neurologist. Today, I had to check in by phone on my meds. I told him the Requip wasn't doing any good for me. He said he'd call in a script of clonazepam for me. He also said that I would have to go off Tylenol 3, Fioricet, and Ultracet. Ultracet is not a great loss, but hey MIGRAINES here. What is the guy thinking?

After I hung up I was really confused about what to do, but I researched the drug. Causes drowsiness in 50% of users? Don't drive! I have to drive to the college tomorrow, and I have to be awake and on my toes when I face three classes of freshmen (and let me tell you some of them are really fresh!). Can't take with opioids? I made a decision. I was not going to take any meds that he prescribed. I faxed a letter to my rheumatologist, who treats me for fibromyalgia (my primary conditon), explaining the situation to catch him up on it before I see him next week. I told my husband that I never want to see that neurologist again and that I wasn't taking his meds. There are other reasons I don't want to see him, but that would make a much longer post.

In addition to taking the edge off the migraines, Tylenol 3 really helps with the weird feelings that I have, and I know how they will make me feel. I have enough to last until I see the rheumatologist. I'm set for anything now.

Elfrieda

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Rubyslipper
Posts: 992
Joined: Wed Mar 24, 2004 2:53 am
Location: Missouri

Postby Rubyslipper » Thu Sep 02, 2004 1:33 am

I have been with this board since the beginning and it still amazes me all the information that the different threads contain. If Jumpy can pull it all together (I have tremendous faith in you, Jumpy!) what a powerful tool we will have. Elfreida, I'm glad you found us. I have never had the "Alien" feeling and hope I never do. That has to be just terrible. But I do have the problem of losing words. As a matter of fact, several months ago I had real problems with typing. I talked about it (at length..sorry guys!) But it truly worried me. I lose words all the time, but there are some times that are worse than others. I, too, used to be able to sit for long periods and paint or read. It hit me like a sledge hammer when you all were talking about not being able to do that anymore. I knew it was a porblem for me but just didn't associate with RLS. It has even started affecting my job. My attention span seems to be shortening. RLS is just not anything we can properly explain to someone who doesn't have it. In their eyes, how serious can it be? After all, it isn't fatal!!! Elfreida, you are in good company here and just like you were told earlier, everyone has something to add and a way to help someone else. Hang in there, we'll hang with you. Can't you just visualize a huge tree, with all the different people hanging on for dear life! But we're all connected so if you start to lose your grip, the next guy will be holding on for dear life and you can count on him! (Okay, or her!)

Sole
Posts: 212
Joined: Sat Jul 03, 2004 9:25 pm
Location: Oregon

Postby Sole » Thu Sep 02, 2004 1:38 am

Elfrieda,

There's no reason you can't take Tylenol 3 and Clonazepam together. That's ridiculous. Yes, they might make you drowsy but it sounds like your body is already very accustomed to the Tylenol 3 and the Clonazepam is not as scary as they make it sound. I took it for years and it was the only thing that allowed me to live normally. I never felt drugged or drowsy. It all depends on the dose. I wouldn't shelve the Clonazepam, if I were you as it IS a very good drug for RLS. You just need someone who isn't afraid to prescribe you a benzo/opiade combination. I hope you find one.
Sole

"If you ever drop your keys into a river of molten lava, let'em go, because, man, they're gone."

jumpyowl
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Joined: Sat Mar 27, 2004 2:59 pm
Location: Yantis, TX
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Sole is right

Postby jumpyowl » Thu Sep 02, 2004 1:58 am

Elfrieda. There are four groups of medications that can even be simultaneously prescribed for an RLS patients. I also found that codein (Tylenol 3) is quite good for RLS. Benzodiazapene (Klonopin is the trade name for yours) is useful to help you to sleep but helps less with RLS. As Sole said they both could be described for you

Requip may help if you took a larger dose.

Now I have to see a female neurologist and she will be in charge of all my medications, :shock: the other two doctors have chickened out. :cry:
Jumpy Owl

Elfrieda
Posts: 32
Joined: Fri Aug 27, 2004 8:41 pm
Location: dc

the sleepy one

Postby Elfrieda » Thu Sep 02, 2004 2:39 am

Anything that causes drowsiness will likely knock me out. Once I was prescribed Flexeril. One pill of the smallest dose would knock me out for 24 hours.

I don't think the neurologist listens to me. In the course of the conversation this afternoon, I told him that I sleep very well. (I fall asleep easily and only wake up if I have to go to the bathroom.) Then later I was telling him about another problem that I have, and he said it might be caused from not sleeping well.


Do you ever feel that you are shouting and nobody hears?

Sole
Posts: 212
Joined: Sat Jul 03, 2004 9:25 pm
Location: Oregon

Re: the sleepy one

Postby Sole » Thu Sep 02, 2004 3:24 am

Elfrieda wrote:Do you ever feel that you are shouting and nobody hears?


You're preaching to the choir!!!!! LOL! :-)
Sole



"If you ever drop your keys into a river of molten lava, let'em go, because, man, they're gone."

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

Postby jan3213 » Thu Sep 02, 2004 3:37 am

AMEN SISTERS!!!


Jan
No one is alone who had friends.

jumpyowl
Posts: 774
Joined: Sat Mar 27, 2004 2:59 pm
Location: Yantis, TX
Contact:

NEUROLOGIST OH!

Postby jumpyowl » Thu Sep 02, 2004 9:11 am

Where do you ladies get these clever sayings? I like this revival tent atmosphere (especially at 4:00 in the morning). :)

Elfrieda, have you had a sleep study? You may be asleep but it may not be restorative sleep. It also seems like the Inderal and Elavil combination gave you hypoxia and that could be an explanation of the loss of your short term memory. What are your vital signs?

Still at least you do not have insomnia. Please impress on any doctor (before they grab the prescription pad that you are quite sensitive to central nervous system depressants or CNS depressants. What you (and they) should be concerned with is respiratory failure but hypoxia of the brain is no picnic either. Let us hope it was only under your finger nails. :wink:

I am wondering (just ignorance on my part) what does a neurologist do?
Their main job could not be treating RLS patients :roll:

Now I am beginning to suspect that they see patients in pain or with some nerve disorder and one of their jobs to watch out for patients attempting to outwit the system. :P I am saying that with a tonge-in-cheek attitude but the :?: is still there.
Jumpy Owl

Elfrieda
Posts: 32
Joined: Fri Aug 27, 2004 8:41 pm
Location: dc

bad sleep

Postby Elfrieda » Thu Sep 02, 2004 1:00 pm

Jumpy,

I know I have non-restorative sleep. It's common with fibromyalgia. The problems that are driving me nuts have only been around since last December; everything associated with the FM has been here for years.

The Inderal/Elavil incident happened many years ago. I seem to be all right since then unless you could count choosing to teach freshman English a mental aberration. :lol:

Elfrieda

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

Neurologists

Postby jan3213 » Sat Sep 04, 2004 9:20 pm

Hi Jumpy, it's Jan

I go to a neurologist at Barnes Hospital in St. Louis--have for approx 10 years. I was referred to him by my GP. I'm no expert on neurology, so I looked it up. Here's what I found: A neurologist is trained in the diagnosis and treatment of nervous system disorders, including diseases of the brain, spinal cord, nerves and muscles. They perform exams of the nerves of the head and neck, muscle strength and movement, balance, ambulation, and reflexes; and sensations, memory, speech, language, and other cognitive abilities, as well as performing CT scams, MRI/MRAs, spinal taps, EEGs, EMG/NCV (electromyography/nerve conduction velocity tests). The article, "An Algorithm for the Management of Restless Leg Syndrome" was written by doctors from the Department of Neurology, Mayo Clinic, College of Medicine, Rochester, Minn., so I would assume they would think that RLS is a neurological disorder. Also, my neurologist told me, several years ago, that there was a theory that RLS might be caused by a lack of dopamine in the spinal cord. He said that's why dopamine agonists help RLS patients. I'm probably telling you what you already know, but at least you know I'm willing to do my homework. Ha! At the very least, I learned something today! Ha!!! Hope you're feeling better, Jumpy!!! Remember, take care of yourself!!!!!

Jan
No one is alone who had friends.

Elfrieda
Posts: 32
Joined: Fri Aug 27, 2004 8:41 pm
Location: dc

another part of the story

Postby Elfrieda » Mon Sep 13, 2004 10:54 pm

The last time I checked in here I told you that I had "fired" my neuro and refused to take any of his meds. For the past week, I've been treating myself with a half Tylenol 3 as needed for whatever it is that I have. I finally saw my rheumatologist today. He's the one treating me for the fibromyalgia. He more or less told me that I was right about the neuro and his diagnosis. The neuro didn't want me taking anything for pain. He offered Vioxx. Well, I'd had that (for pain) a few years ago, and it didn't touch my pain. The rheum guy scoffed when I told him about "restless body syndrome." He said he sent me to the neuro to find out if I had any nerve damage, and it didn't seem that I did, so he is going back to his original theory that the restlessness is neuropathic pain associated with FMS. He says the pain is in layers and the meds I've been taking are attacking one layer while still leaving me in pain. Whatever. He put me on methadone along with the Tylenol 3 (as needed). It seems that pain meds do help my restless feelings and if it's RLS run amuck or neuropathic pain, I don't care so long as he's giving me something to help it.

In my MRI report there was something found on my brain that should have follow up. The neuro-guy didn't tell me about that. The rheumy says it could be the start of MS.

He also wants me to have a neuro-psychiatric consult for the losing words thing that I'm having.

So, you nice people, I'm still not sure what I have, but I am certain the rheum-guy will help me. I have found so much support and friendship here. You're a great bunch of people. I'd like to hang around, but I don't want to be an interloper.

If I could be of support to anyone who has FMS as well as RLS, I'd be willing to answer any quesitons or share experiences.

Elfrieda

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

Interloper? NOT YOU!!!

Postby jan3213 » Mon Sep 13, 2004 11:18 pm

Elfrieda, it's Jan

Don't you leave!!! You are in no way an interloper--you are a friend in need and a friend who helps others!!! You've helped me!! Hang out with us, please. I'm sure I'll need more questions answered!!!

Hugs!

Jan
No one is alone who had friends.

becat
Posts: 2842
Joined: Thu Apr 29, 2004 11:41 pm

MS

Postby becat » Tue Sep 14, 2004 4:40 am

Elfrieda,
you couldn't possible leave..............if it's MS talk to my sister in law, she got that call about a year and a half ago.......she's a kind woman and they (the docs. attacked her body with everything they had) she'd be glad to share with you.
You just never know who'll you'll help being here. Stay and keep us posted.
hugs and much love


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