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Is there anyone like me?

Posted: Thu Aug 26, 2004 6:30 pm
by Elfrieda
I’ve been looking around the site and trying to find a story like mine. There is so much here to read, so I’ll put in my situation and maybe someone will know someone with the same kind of thing. Must warn you this is long, but I feel desperate to find information on my sort of condition. I had never had any kind of symptoms of RLS until 12/03 and then something hit my whole body with a vengeance. I was restless but with an internal kind of restlessness. I had no trouble sleeping at night, but the days were horrible. Sometimes I felt like curling up in a ball and screaming. I didn't though. I have taken Tylenol 3 for years for migraines. There have been days, over the years, when I had to take the maximum allowable to take the edge off the headaches. I discovered that on the days when I was taking T-3 for headaches the "restlessness" was seemingly not there or at least was less. I admit I began to have a little on non-headache days. That did give me some relief. The feelings in my chest would seem to rush up my throat, into my face, and around the top of my head. Sometimes the feeling in my throat felt like a trapped scream. Never having had any of these feelings before, it is hard for me to describe them. Restless, ansty, creepy-crawly. In the meantime, my GP, whom I had seen from the start, was stumped. She thought anxiety and prescribed xanax. Well, who wouldn't be anxious and depressed after day after day of feeling that way. Xanax didn’t help.
I lost interest in life. It took all my concentration just to put one foot in front of the other. I am a college professor and found it hard to cope with the students and the grading load. There were many times I dismissed classes early because I couldn't bare to be there. I wanted to get home and find something that would give me relief. None of the meds that my GP was trying were doing me any good. On days when I didn't have the strength to hold out, I took T-3. There were times during that period that I thought my husband, who was very supportive, would be better off without me.
Let me say here that I also have Fibromyalgia, GERD, IBS, chronic migraines, I “loose” words when I’m speaking, etc.
In June, I finally got an appointment with a top FM rheumatologist. He put me on Neurontin and tried various pain killers. I didn't want to keep using the T-3 because it had worked well enough on the migraines, and I didn't want to acclimate to it so much that it wouldn't work on the migraines. I worked up to 1200mgs of Neurontin. It helped a little. At least I got back some interest in life. I spent the summer in a fog, taking six ultracet a day just to keep my sanity. Not the best way to feel, but I did get out and have some fun taking day trips and doing some recreational shopping. The rheumatologist wanted me to see a neurologist.
I got the appointment with the neurologist last week (8/04). He put me on the Requip in addition to the Neurontin. I have been able to cope somewhat with that combination augmented with some Ultracet. T-3 still does the best job for me. The neurologist doubled the dose this week from .25 to .5. I had the tests (MRI, EMG) to rule out Parkinson's and MS or peripheral nerve diseases. The neurologist says I have an atypical case of RLS.
I think my doctors are probably doing the best they can. It does bother me that each one says, “It will take some time to figure this out.” They aren’t living in my body, which is a very uncomfortable place to be. As you can see, I don't follow the descriptions in the literature for RLS. I'm looking for some kind description of a case such as mine or someone who is have a similar experience.

Posted: Thu Aug 26, 2004 7:20 pm
by claradragon
I understand that feeling of it rushing up your chest and is the most indescribable of all my symptoms. I have mainly focused in the left hand side and causes the strangest sensations around my heart which is most unnerving!!! And the hopelessness you describe is discussed under another topic (i'll go and find it for you in a bit) My sympathies to you but welcome, keep reading is the best advice i can give you


Posted: Thu Aug 26, 2004 8:00 pm
by claradragon
Hi again

The topic i mentioned is under General topics/Breaking news and was written by becat.

Hi There

Posted: Thu Aug 26, 2004 9:10 pm
by becat
Hi Elfrieda,
Gosh, I'm glad your here..........You are already doing what needs to be done....ask questions and educate yourself about RLS. Your not alone, your not crazy, and we are here for you. Yes, there is a ton of reading to do, but it's an impowerment trip here. You'll find that the more you learn about what's possible with RLS, the more you can prepare and defend yourself. Good people here to share, educate, and listen when you need to vent. There aren't many subject we haven't talked about amoung our post, so you may find yourself in some of our stories. I hope you''ll share your as well, you never know when what you've gone through wil help someone else.
"chronic migraines, I “loose” words when I’m speaking, etc. "
I too, have migraines and they can wipe me out. I've choosen to take Amerge or Imitrex and both so cut the headaches in an hour or less. I am also a huge dyslexic and your saying that you loose words almost brought me to tears. I thought I was the only one. I loose words for long periods of time, only to have them back in an instant after months or years. I know it's not the RLS, but simply a communication glich. It was a warm moment to know that someone out there knew what it was like. Thank you for sharing that.
Your just in time to help us with our quest in changing some of the ways this is diagnosed and treated. I hope you will register and fill out a bio for us. We also have a research project going with Jumpyowl.
Please let us know how we can help and keep us informed, we'd love to know.

Welcome Elfrieda

Posted: Thu Aug 26, 2004 9:45 pm
by jan3213
This is Jan

First of all, welcome to our family! I'm glad you found us for two reasons: First of all, I'm sorry you came to us because you have RLS, but glad because there are so many wonderful people here who can help you in so many ways. Secondly, because I think you can help us. Me, in particular. You see, you already have. When I read your post, I realized several things. I've been a member of this forum since May and have had RLS for 20 years or so. Two things that you mentioned "popped out" at me. The first thing was the restlessness that you mentioned. That fits me to a "T". For instance, I used to love to read. In fact, I was an avid reader. For the last few years, I cannot settle down enough to even read a few pages in a book. I am so restless, my adult children call me the "energizer bunny". I NEVER equated that with RLS, but, come to think of it, there is a correlation. Secondly, I, too, "drop words" all the time!! I just assumed that came with age. I would just laugh it off and say that my brain needed to be defragged. But, I often am in the middle of a sentence and can't think of the next word I want to say to save my soul!!! Thank you for posting. As Becat said, I hope you fill out a bio and register. We would like you to join our family. Again, welcome!!!


That's so funny

Posted: Fri Aug 27, 2004 4:17 am
by becat



Just Call me Line Stealer

Posted: Fri Aug 27, 2004 4:20 am
by jan3213
Hi Becat, it's Jan

That's great!!! I'm gonna use that one!!!!

Love ya


Re: That's so funny

Posted: Fri Aug 27, 2004 7:09 am
by sardsy75
becat wrote:HI GIRLS,


Oh Becat, you just made my day with that one!!

And Jan, your Defragging My Brain comment had me laughing hard! I'm going to try that one on hubby the next time I stop mid-sentence when i'm talking to him .... he's a computer geek from way back lol.

I hadn't mentioned it before but I too have problems with my mind going completley blank in the middle of a sentence.

It is sooooo frustrating! And even more frustrating when your brain picks the sentence up from where it left off .... about 8 hours later! Even worse when it wakes you from a dead sleep :roll:

Welcome Elfrieda:

Posted: Fri Aug 27, 2004 9:02 am
by jumpyowl
It is only 3:52 AM, but you already made my day. I know that you posted your story probably with not much hope that there are people out there whom have the same or similar experience than yours. Well, you saw the response within a day or so.

When then there are a few of weirdos around, such as myself, who has a strange talent, if you can call it that. I was probably born with an innate curiosity, and the partially due to my basic training, and muti-disciplinary sel-training, often I am able to find correlation between or among seemingly unrelated things. In areas like little know diseases it comes handy, even though my exposition at first usually meets blank stares.

Sorry for having diverged. However, my brain was really stimulated by your story. I am busy with the questionnaire right now but I promise I will get back to your problem and give it to some more thought. Let me just give you some fragments of the insight I am apparently getting in your situation.

Tylenol 3 is the second in potency (after Darvon/propoxyphene) at its lower dose formulation (15 mg). At the higher doses, it may be just as potent as the other narcotic agents. Codeine comes in 15 mg, 30 mg, and 60 mg tablets. Tylenol with Codeine has 3 strengths each in combination with 300 mg of acetaminophen; No. 2 has 15 mg of codeine, No. 3 has 30 mg of codeine, and No. 4 has 60 mg of codeine. It has rapid onset of action (less than 30 minutes) and will last 3-6 hours.

Codeine doses range from 15 mg to 240 mg per day. The medication can be given at 15 mg to 60 mg every 3-6 hours. For regular daily usage, the compound with Tylenol is best avoided to lessen the chance of side effects from a second drug. (emphasis is mine)

Warning: Some of the SSRI antidepressants (Paxil, Prozac, and Luvox) can cause a decrease in the effectiveness of codeine. These drugs inhibit the O-demethylation of codeine to its active form of morphine. The pain killing effect of codeine can be significantly decreased if you are taking one of the above antidepressants. This problem does not occur with other pain killers on this list (another reason to avoid antidepressants unless they are needed - emphasis is again mine).

In this quote there is justification of my disliking mixed drugs. Unfotunately, you doctors seem to prefer them. For example, Ultram woul probably be good for you. So what does he give you? Ultracet, ultram diluted by acetaminophen of Tylenol.

Among the benzodiazepine, Xanax was prescribed for you. It is effective for insomnia (nonrelaxing sleep does not count) when it is caused by anxiety. Klonopin, which is similar to Xanax is also in the anti-anxiety group but it is long-acting. Still it is widely used for RLS. There are several other benzodiazepines also effective foor poor sleeping habits and are also effective for RLS such as Restoril, Dalmane.

Now our history is begining to shpw similarities. You took an opiod for migraines. When you stopped taking it, RLS symptoms reared their ugly head. I discovered that I have RLS when discontinued taking an opioid (hydrocodone in my case) Hydrocodone is quite similar to codein, and it is also mixed with acetaminophen.

After a sleep test (which I recommend just to find out how well you sleep and also whether you have Periodic Limb Movement Disorder, PLMD), which found severe PLM, I was subcribed Neurontin (just like you). Prior to that I experimented with another anticonvulsive, Topamax, which I tolerated much better. I tried Neurontin several times. I discovered that doubling the dose from 300 to 600 mg once in the evening was disastrous, UNLESS I split it and took 300 mg in the morning and 300 mg in the evening.

I really wanted to try a dopamine agonist with a better analgesic, and finally I am on Mirapex 0.5 mg and Ultram 50 mg both twice a day. I am discovering that my previous dose of Mirapex, 0.25 mg is sufficent if I take it twice a day instead of all of it in the evening.

Now similarities in our saga continues. My pain doctor (whom I had to see for Ultram) is uneasy and sent me to a neurologist to rule out certain other problems. I think that MRI is in thebook as well as some nereve conduction studies. Since my appointment is October 13, you are ahead of me there.

Could I ask you to correct my ignorance: what is EMG (electromyogram?)

Also what are GERD and IBS? Fibromyalgia I am well familiar with, as I have been trying to help someone who has a severe form of it and she is on heavy medication..

I stop here even though I have not quite proven my point yet.

Re: That's so funny

Posted: Fri Aug 27, 2004 1:47 pm
by claradragon
sardsy75 wrote:
becat wrote:HI GIRLS,


Oh Becat, you just made my day with that one!!

And Jan, your Defragging My Brain comment had me laughing hard! I'm going to try that one on hubby the next time I stop mid-sentence when i'm talking to him .... he's a computer geek from way back lol.

I hadn't mentioned it before but I too have problems with my mind going completley blank in the middle of a sentence.

It is sooooo frustrating! And even more frustrating when your brain picks the sentence up from where it left off .... about 8 hours later! Even worse when it wakes you from a dead sleep :roll:

It's not just me!!!

The amount of times i've stopped dead in the middle of a sentence is unbelievable! I have a suspicion that this is sleep deprivation that robs us of concentration.

Let's Start a Group

Posted: Fri Aug 27, 2004 1:53 pm
by jan3213
Hey Girls, this is Jan again

Got an idea! Maybe we should start a group--You know, travel all over the world, and maybe between the four of us, we could actually finish a sentence! Whatcha you think?


Love the idea!!!

Posted: Fri Aug 27, 2004 1:56 pm
by claradragon
:lol: :lol: :lol:

Thanks for your replly

Posted: Fri Aug 27, 2004 6:00 pm
by Elfrieda
Thanks for answering me. I’d like to answer a few points. In reading over my posting once it was posted, I noticed that I “loose” words instead of “lose” words. I do know the difference. It’s my typing that’s at fault there.

I first posted because all the information I could find on RLS didn’t match up with my experience. I keep reading that RLS is a sleep disorder and most of the specialists are in the area of Neurology and Sleep Medicine. I don’t have any trouble going to sleep. My legs are hardly ever involved in the feelings, which are mostly in my chest, neck, face, and head. More in my forearms than in my legs. My husband says I don't move around much at night.

I have had Fibromyalgia for years, and it seems to have worsened. I really haven’t done much about it. Most drugs that are prescribed cause more harm than good. I endured the pain and fatigue but when the very disturbing rushing, antsy feelings began last December and bothered me every waking moment, I had to give in and do something.

I have taken Tylenol 3 for years for the migraines. I have never stopped taking it, so Jumpy’s theory there doesn’t follow. My symptoms didn’t arise after I discontinued T-3.

I tried Imitrex the first week it was on the market—it made my headaches worse. Amerge dosen't touch them. I was on Ultram once after a particularly bad episode with head pain that landed me in the emergency room. It doesn’t touch the pain I have. While in the emergency room, I was given among other things dilaudin which hardly took the edge off the pain. After that episode I was on Topamax for several weeks. I didn’t like it, either. Food didn’t taste like it should. I could hardly bare to eat anything.

I don’t like Ultracet and hardly ever take it. Two pills take forever to work. It’s almost time for a second dose before the first begins to work. At first, I was told to take Neurontin at bed time to help me sleep. That was the one thing to keep me awake. I do better with three doses a day (if it helps at all). It is still very early in my treatment with these drugs and I’m taking a wait and see stance.

GERD is Gastro-Esophageal-Reflux-Disease. I have a bad case of it.

IBS is Irritable Bowel Syndrome. Also a bad case.

I’m having surgery soon to have my esophagus dilated. I have trouble swallowing, too.

My husband calls the whole mess “sick puppy syndrome.” And I say, “Yeah, but I can still wag my tail.” :wink:

Hey, it's Jan again

Posted: Fri Aug 27, 2004 7:05 pm
by jan3213

Don't apologize for your typing! We all type faster than our brains and fingers can work (at least I do)! Anyway, I'm familiar with both GERD and IBS (I have acid reflux, but apparently not as badly as you), BUT I also have IBS. Aren't we lucky? Good luck with your surgery!!! RLS effects people differently. Some people fall asleep, THEN their legs start giving them fits. Some people can't lie still long enough to fall asleep--they can't get comfortable to save their lives!! RLS can effect your arms, not just your legs. At the beginning of this site, there are drop down menus, and under I Have Restless Legs under Announcements, there is a link which will lead you to RLS Algorithm, which is: which will explain RLS. My suggestion is read, read, read. And I would suggest that you read as many posts as you can. That will also help you.
Even though I've had RLS for 20 years, I'm still learning something new every day. Believe me. I'm no expert. I just know what I've experienced. Take Care!


Repost to Elfrieda

Posted: Fri Aug 27, 2004 7:52 pm
by jumpyowl
I started to answer in detail to your post but I could not complete it because my better half showed up (I have a small cabin in the woods a small distance from the house) and when she realized I had been out there since 1:30 AM she chased me into the house so I could get some restorative sleep. :oops:

So I have never really got to the point where our situation is similar in certain respects. I was going to continue with my expose but if you rather not have me do that, I will not. Sorry of you came on too strong, I occasionally do that in the wee hours of the morning. :(

I also had IBS (they called it nonulcerative collitis way back when) for 25 years. Finally I managed to control it. It started in my early thrities when I lived in Central America.

It is interesting that you also find paresthesia worse than pain (with the exception of migraine, or kidney stone pain). So do I.

We have someone among us, who also has a problem with her esophageal valve. Perhaps she will decide to comment here.

I hope you decide to complete the questionnaire. Mispellings so not count
as long as the word is understandable. :wink:

I can send it you either in word format or in rich text format if you let me know your e-mail. They are easier to complete than the one posted here and can be returned electronically.