Self-diagnosed

Whether new to RLS 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.
RLSinGA
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Symptoms

Post by RLSinGA »

1. I'm new to this forum/discussions format ( my wife uses a discussion site so she suggested that I try )

2. I don't take drugs or any daily meds

3. Had back surgery in 1990 for L3 and L-4 removal

4. As for post stress...spent 21 years in Army (need I say more)

5. My wife wakes me up every night (lately) telling me yo quit kicking

6. Have a nice job, bought a house a recently, don't WANT for anything

7. I really don't think that this "thing" have is stress related

8. What else can O provide so I may get some answers to WHy I can sllep like a baby yet I constantly am moving my legs ..I have no pain that I am aware of..yet my wife is sleepless ???????

anyone have any suggestions?????

Sole
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Re: Symptoms

Post by Sole »

RLSinGA wrote:
4. As for post stress...spent 21 years in Army (need I say more)


anyone have any suggestions?????


Drink more water!! Isn't that what the Army would say? I'm kidding, of course. My husband broke his legs in boot and they just kept telling him to drink more water. So it's one of my favorite sayings now.

"Periodic limb movements in sleep are repetitive movements, most typically in the lower limbs, that occur about every 20-40 seconds. If you have PLMS, or sleep with someone who has PLMS (also referred to as PLMD, periodic limb movement disorder), you may recognize these movements as brief muscle twitches, jerking movements or an upward flexing of the feet. They cluster into episodes lasting anywhere from a few minutes to several hours."

Here's a link to some information on it. http://www.sleepfoundation.org/publicat ... t_plms.cfm

I recently asked about it too and other fine members gave me the same information I'm giving you. A sleep study, ordered by your physician, can diagnose if it is, in fact, PLMS.

So your legs don't bother you when you are awake? You don't have the restless feeling in them? It's only when you are asleep and you don't even know you're doing it? If that's correct, I wouldn't completely rule out RLS but it doesn't sound likely. But I'm just a patient so take anything I say with a grain of salt.
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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Some more comments:

Post by jumpyowl »

You, RLSinGA wrote:

8. What else can I provide so I may get some answers to WHy I can sleep like a baby yet I constantly am moving my legs ..I have no pain that I am aware of..yet my wife is sleepless ???????


You are doing fine in providing information, Now we know that you are on no medication. Also that you have a sleep disorder even though it is your wife who does not sleep well! Also that you have no pain. About 50% of the people with this affliction has no pain.

Where I am fairly certain that you have a sleep disorder called periodic limb movement disorder. PLMD. It really does not matter whether you also have RLS because the treatment is the same.

Even though you sleep through it and not aware of it those jerky movements almost wake you up (near arousal) and get you out of the restoring stages 3 and 4 sleep phase. A sleep test (with polysomnograph) will exactly tell what is happening in your body and brain during the night. So I also recommend a sleep test.

There are various types of medications that will eliminate (but will not cure the affliction) the leg movements. Hopefully the sleep doctor (unless he specializes in sleep apnea) will be able to prescribe for you. There you have to work with your doctor because different people react to various medications differently.

One drug to keep in mind is MIRAPEX at low doses (it is an anti-Parkinson medication. It helps about 90% of the people.

Let us know what is happening to you on your journey.
Jumpy Owl

jumpyowl
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Mirapex, cont

Post by jumpyowl »

Well into the second week on Mirapex. I like a bit of dopamine it seems to agree with me. :)

If I take one in the afternoon or even in the morning, I take 0.25 mg at night also.

Otherwise I will take 0.5 mg at night.

I slept in the afternoon with no Mirapex and no paresthesia. I will now take 0.5 mg Mirapex. And possibly a hydrocodone (10/325).

RLS and hopefully PLM are under control.
Jumpy Owl

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

Post by Sole »

Excellent news, Jumpy. You didn't mention your pain level? Has the decreased also?
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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Pain, good point!

Post by jumpyowl »

Thank you Sole. :) I should have mentioned the pain as it is part of my RLS/PMD. Has always been. :oops:

Lately, I seem to have only the remnant pain of RLS, dulled and located in an immobile knee or other leg part. However, it can also be in the shoulder. It does go away with movement. And it is definitely dulled.

It would be nice if I had a polysomnography machine at home to test the efficacies of these medications. :wink:

I will go to a "new" physician on the 28th of July. (I know him but I have never been his patient). He is a pain doctor, which I think I need at this point. I will gently drop the pulmonologist who is the head of the sleep lab. The pain doctor could send me back to him strictly for a polysomnograph when needed.

I have a question! When you discontinued Elavil and Trazadone did you have anything resembling withdrawal symptoms? If so, for how long? I realize it is hard to tell which is which at this point!
Jumpy Owl

Sole
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Post by Sole »

No, I didn't have any withdrawal symptoms. I had only been taking them for a week or so, if I remember correctly.
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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Mirapex, cont.

Post by jumpyowl »

Time for a head up on the Mirapex cure:

I am still taking Mirapex the following way:

Once a day: 0.5 mg At least 30 minutes before retiring. I mean before lying down. Immediate retiring is sure to bring some dulled paresthesia a bit later on.

Twice a day: 0.25 mg during the day. Either 0.25 mg or 0.5 mg in the evening.

I always add 1 hydrocodone (10 mg/325 mg) to Mirapex.My knee usually gets frozen with "dulled" pain. Motion helps to resolve the pain, so it is RLS pain, but it no longer increases without bound if not moved, so I can sleep through it and notice it in the morning or during stage 2 sleep.

I do not get food craving with Mirapex as I did with Neurontin. However, my blood pressure is fairly low in the morning:

104/68/72 or 98/60/70 are typical figures.

I no longer take Klonopin even occasionally.
Jumpy Owl

claradragon
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Post by claradragon »

hi,i'm new to all this but in my heart i know i have rls :( my doctor gives me that blank face as soon as i begin to explain the symptoms :? none of my friends or family have stood by me believing me to be a timewaster,liar and fake :x until i dicovered you guys :D I AM NOT THE ONLY ONE WHO FEELS THESE SENSATIONS! :D the relief is indescribable and that alone has helped but reading the info on the various drugs prescribed has helped lots more.i was prescibed phenergan and found that my rls rapidly worsened :( and by my insistanced finally managed to change them and am back on opiods :wink: much better!i'm going to see my doc again this week and take info from here with me perhaps he'll listen :shock: you are amazing and thankyou all of you .x

jan3213
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Joined: Wed May 26, 2004 8:46 pm
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Claradragon

Post by jan3213 »

Hi

I'm Jan and I've had RLS for approx. 20 years. You are not alone here. There are lots of very nice people who will help you and LISTEN to you when you need to vent! A lot of people don't understand what we go through--even people in the medical field. I know what you mean by the blank stares and the lack of sympathy. Believe me--I've been there and still am in the "outside world". But here, on this site, I've received lots of love, concern, sympathy, and lots and lots of INFORMATION. The first thing I did was read everything I could (I still do) and become as familiar with RLs as I could. Even though I've had it for so long, and I have an excellent and very sympathic neurologist, I found that there are still many things I did not know about the syndrome. Don't be afraid to ask questions--no question is "stupid"--everyone on this site is here to help each other. When you get depressed or "down" and you post a message, you may think no one will read it, but you will be surprised at how quickly someone will answer with just the right message. Then, it will be YOUR turn to help someone else. That's the way it works. And no matter how insignificant any experience you've had may seem, it may help someone else cope, so don't hesitate to share anything you may have experienced concerning RLS. Welcome to the group! Sorry you have RLS, but at least we have each other!!!

Jan

claradragon
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Post by claradragon »

many thanks for your words :lol: to find support after years of wandering the wilderness alone is incredible 8) but i fear i have a long battle ahead...even my own partner won't listen to me anymore :cry: however to find this place has helped to make my mountains molehills :lol: all i need now is sleep as i've yet to achieve that for the last 24 hours! :shock: good sleeping!x

jumpyowl
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Hello, Clara!

Post by jumpyowl »

If you want to share the stuff you are taking with you to the doctor, I may help you to document it better. You could reach me by e-mail if you want to preserve your privacy.

I was prescibed phenergan and found that my rls rapidly worsened.


Phenergan (promethazine hydrochloride, an anti-emetic) is a troublesome medication. Interacts with many other medications and is too readily prescribed IMHO.

You need perhaps to be more assertive in your life. :? It must be a tremendous load being surrounded by unsympathetic people! Your relatives and family are hard to change but what about your significant other? Once he is starting to be part of the problem instead of the solution...? But to be fair, it is not easy to live with an RLS person, either. :oops:

You are right. Lack of sleep is one of the major morbidity of RLS. Then you can work on lack of quality sleep (increased stage 3 and 4). :)

Read some more, then ask! Also consider my offer (top sentence). We are ready to help you!
Jumpy Owl

claradragon
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Post by claradragon »

Hi jumpy, as i explained in my first posting i really am new to this :? i have joined the internet only a week ago so even switching the pc on is still an accomplishment!!! :roll: fumbling blindly has it's advantages...it occupies the mind :lol: but it doesn't help with complicated projects :shock: i have revisited my doc today and insisted he treats me for this and amazingly (enough although he knows very little about rls ) he is willing and very keen to find out more! :lol: he's sending me for full blood tests (which i have tomorrow)contacting a specialist(who is fortunatly based at the hospital 5mins walk away :wink: )and referring me to a neurologist :? currently i am taking zopiclone 7.5 for sleep,mefenamic acid 500mg for period pain and codeine based painkillers when necessary,these are to be reviewed once he's consulted the specialist. feeling very positive and knowing it's not in my head has helped enormously with assertiveness :oops: my partner on the other hand...well maybe someday she'll pull her head out of the sand !:xas for being easy to live with...that i am not :roll: subconciously my life has been geared around having rls and if anything upsets the routine stress sets in and you all know where that road goes :roll: i can have rls attacks for 12 hrs and more do others :?: ...attacks of pain can last indefinately even with painkillers(i only use codeine based not nsaid)surely there is light at the end of the tunnel :cry: x

jumpyowl
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Need a thread of your own

Post by jumpyowl »

First thing is starting a thread of your own. I did that for you with "Is there a light at the end of the tunnel?" title. I will also take over some more info from your previous posts there.
Jumpy Owl

jumpyowl
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MIRAPEX/HYDROCODONE

Post by jumpyowl »

I am continuing to take Mirapex and Hydrocodone. Usually I take 0.25 mg MX around noon time with one 10 mg/325 mg HC and then before retiring I take either 0.25 mg MX or 0.50 mg MC with the same amount of HC.

What a difference a day makes....! :shock:

Yesterday was a stressful day. I took the medication and tried to take a nap. The legs felt heavy with a burning pain. The one I read about. This pain does not go away with limb motion. I walked quite a bit with the dog.

The problem was taking the medication too late, the symptoms were already there.

Same in the evening so I had to take a sleeping aid (chloral hydrate) as well as 0.5 mg MX and 1 HC.

Today was a similar day but without the stress. Long walk and cutting grass as well as chopping wood. And I took the medication in time. Again 0.25 mg MX and one 10/325 HC. Much less of the burning type of pain. I did not even take a nap.

At night I will again take 0.5 mg MX and 1 HC. It is amazing how the taking and timing the medication influences the discomfort and the type of paresthesia or pain one has. Also the effect of stress is quite predictable.

I remember reading about the interaction of dopamine agonist and opioid. To refresh everyone's memory: In one experiment, the patient was given earlier an opioid antagonist, then later was treated with a dopamine agonist. As expected, the opioid antagonist did not block the efficacy of the dopaminergic treatment. However, the preadministration of a dopamine antagonist did block the beneficial effect of the narcotic drug (opioid).

This is strange and I feel we should take this into account when using the two types of drugs together as I am doing (MX and HC). However, I do not know enough about the mechanism of action of these receptor sites. I would welcome any suggestion, while I am studying this aspect of the RLS scene. :?
Jumpy Owl

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