New here and new to RLS

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.
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Little Lamb

New here and new to RLS

Post by Little Lamb »

Hi there! I do have RLS. I get it sometimes while I'm lying down going to sleep. It happened recently where it just wouldn't stop. When my legs get like that, I put the effected leg over the side of the bed and it usually stops. I tried this in two different positions and my leg would not stop feeling funny or twitching.

I have a stand up job where I'm on my feet all day. I was wondering if people who have stand up jobs are the only one's effected? Do people who have sit down jobs have the same problem?

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

Post by jan3213 »

Hi Little Lamb

I'm Jan and I've had RLS for approx 20 years. Welcome!! I'm sorry you have RLS. Do you have that creepy-crawly sensation in your legs so that you feel as if you have to move them? Does it feel better if you get out of bed and walk? Just checking! I've been a paralegal for about 28 years (now retired), so I've had a "sit down" job. I think it happens to all kinds of people in all kinds of occupations. This is a great site with lots of wonderful people who are extremely helpful and kind. The first thing I did was read as many posts as I could and don't be afraid to ask questions!! That's what we're all here for. There are some great resources on this site (Jumpyowl, for instance) who can help you immensely!! And, there are many, many wonderful people who are willing to share their experiences and just lend an ear. Under "General", there is a thread called "ORP" which stands for "Our Research Project". There are questions on that site which you may find helpful. That may be a good place to start. Just read, read, read! You may find a place where you may want to post a question. Someone will see it right away, because when you post something, it automatically moves to the top. Again, welcome!

Jan

Little Lamb
Posts: 28
Joined: Fri Jul 30, 2004 12:24 am

Post by Little Lamb »

Thank you Jan. I don't know if I can explain what my legs go through. A couple of years ago it started. My legs would move involuntarily, for no reason. I was trying to get to sleeep. I figured it was involuntary spasms. My legs felt normal, then a slight funny feeling and then jerk. It was very weird. I looked up spasms on the Ask Jeeves sight. I found only medicatiohn could get rid of it. I didn't want to take medication for this. I still don't. I started to exercise my legs which helped. It also made me feel better when I was standing all day. I went on vacation and didn't do much exercising. I was under the impression it only happened when I would stand all day. It sort of went away when I did my leg exercises. I thought I was rid of this dreadful jerking of my legs. I stopped exercising. That was a couple of years ago. Recently it started again and I looked up "restless legs" online and found this site.

I find if I move my legs around before going to sleep, I don't experience the restless legs. Sometimes I don't feel like moving my legs before going to sleep and it starts. I believe it has woken me up. I just wait for it to pass.

I'll have to try the different forums you suggest. It does seem like an interesting site and very informative.

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

Welcome little lamb!

Post by jumpyowl »

It sounds like you have an intermittent RLS very possibly associated with what they call the Periodic limb movement disorder. Since for this mild form you may not have to take medication I will just let you know the nonpharmaceutical approaches. :)

I am quoting some important points from the "An Algorithm for the Management of RLS, by M.H. Silber et al. Mayo Clin. Proc. 79(7):916-922, 2004.

The characteristic symptoms of the Restless Leg Syndrome are limb discomfort and urge to move legs which occurs at rest. [paresthesia] Paresthesia are relieved by movement and are worst in the evening and night. (this is an important point). 8)

Paresthesia cannot be determined by an objective measurement. However, RLS is usually associated with involuntary contraction of leg (muscles) during sleep known as periodic limb movements (PLM). Now this can be measured during a sleep test.

How well do you sleep? Are you still tired after several hours of sleep? This happens when you have PLM. You may want to take a sleep test latere on when your symptoms get to be daily and more severe.

Do you have insomnia and if so what type?

How frequent and severe are your symptoms? Do you have pain? [About half the patients have pain associated with the syndrome.]

You should decide how severe is your RLS? Treatment does depend on severity.

The least severe form of RLS is the intermittent type.


Intermittent RLS (that is troublesome enough to require treatment but does not necessitate daily therapy)
Daily RLS (that is frequent and troublesome to necessitate daily therapy)
Refractory RLS (which is daily RLS that had been treated with a dopamine agonist unsuccessfully).


SOME IDEAS ON TREATMENTS FOR THE INTERMITTENT RLS

Nonpharmacological therapy

• Determine ferritin level in the blood plasma and administer iron replacement if needed.

• Mental alerting acitivities to reduce boredom

• Abstinence from caffeine, nicotine, and alcohol

• IMPORTANT: If you are using antidepressants, neuroleptic agents, dopamine-blocking anti-emetics, or sedating antihistamines (Tylenol PM, Benzadryl) ) keep in mind that they are contributing and exacerbate the symptoms. If possible they should be discontinued.


Let us know if you have any questions no matter how naive you think they are.
Jumpy Owl

ronh
Posts: 10
Joined: Tue Jul 27, 2004 4:46 am
Location: Zephyrhills, Florida

Post by ronh »

As always throughout this forum, JumpyOwl has some great advice there for you.

One thing I'd like to comment on is his indication that most RLS has been shown to occur during the evening or night. Indeed this is important. However, I have worked nights for years so my day and night is totally turned around from everyone else. My symptoms of RLS will appear when I go to bed which is around 5-6am. The key here is not really the difference between night and day, but what your body considers to be the evening hours for itself as it is winding down and the melatonin is starting to do its job.

I suspect most people don't notice it during the day (or night if they are on my schedule), simply due to the fact that they are constantly moving. RLS is rather unique among disease or conditions because whereas rest helps with most everything else, RLS does its best to force you into activity and only with activity does it seem to want to let up on you. The problem is that we all need our rest though. I've had very active jobs in law enforcement, Hemodialysis and now with my own business just the opposite - lots of sitting. The RLS has been there all along so the amount of daily activity has not had any effect for me. I think it can strike anyone regardless of their daily activity style.

Welcome to the group and hope you'll find things in here that may be of benefit to you. It's a great group of people and abundance of experiences to learn from.

ronh

Little Lamb
Posts: 28
Joined: Fri Jul 30, 2004 12:24 am

Post by Little Lamb »

Thank you, jumpyowl and ronh, for the welcome and replies. You offer good advice. I do have a very mild case of rls.

Sometimes during the day, I do have an urge to move my legs since I'm basically in one spot and move very little. I don't know if that's rls or me being bored in one spot. I process and hang clothes for a non profit organization, so my movement is limited during the day. At break time I sit there and swing my legs. I get satisfaction.

When I stand and bend my legs or walk around a little, I get no satisfaction. I do want to go on a long walk or sit down. We only get to sit during breaks and lunch which are not long enough.

Would you say this is part of rls or me just being bored and wanting to move around?

ronh
Posts: 10
Joined: Tue Jul 27, 2004 4:46 am
Location: Zephyrhills, Florida

Post by ronh »

RLS will give you the feeling of what some describe as bugs in the legs. Your body may want rest but the legs are ready to take on the world. They send the message to the brain for you to move them. I have had this happen during the day while sitting or watching television but that’s been very rare. Other people do report it during the day as well. Standing and bending does provide some relief for some people. But, what the legs are really looking for is greater activity and thus your urge for that long walk.

It is important to seek medical advice to rule out RLS being associated with something else. An example may be poor circulation or as JumpyOwl pointed out, as simple as some Iron replacement. My mother-in-law had suffered the symptoms of RLS for a period of time and following a medical checkup for it found, in her case, all she needed was some additional iron. Had not bothered her since. Naturally, the only way you can tell for sure is with visiting the doctor and have him evaluate your labs.

RonH

Little Lamb
Posts: 28
Joined: Fri Jul 30, 2004 12:24 am

Post by Little Lamb »

I'm wondering if I do have low iron. When I've gone to give blood they won't accept it because there's not enough iron in it. I recently had a blood test so I'll find out the results.

I am guessing I have rls. I don't know what else the leg jerks are.

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

Iron

Post by jumpyowl »

Little lamb: see whether they measured your ferritin levels in the blood plasma. If it is under 50 micrograms/ml then it is low, and you need supplement. You have to be careful what form you take it to ensure absorption in the intestines. Also if you take too much it can be toxic.

Let us know if you find your blood test results. I posted mine (thread: self-diagnosed, page 7, in forum New to RLS).

*** RIA ***

Ferritin (range 28 - 464) 87 ng/mL

[The lower limit of the range is misleading because under 50 ng/ml, the ferritin is too low.]


Little lamb, you asked about whether movement helps with the symptoms. With RLS movement of the limb make the paresthesia sensations to go away temporarily. But they come back as soon as your limbs are still.

The jerky motions are not RLS necessarily, either.

Also remember that there are about 15 afflictions that all have paresthesia as a symptom, RLS is not the only one.

Take care of your iron problem and you may get rid of your symptoms.

_____________________________________________

Ron, your experience agrees well with the circadian nature of the symptoms. I answer you later.
Jumpy Owl

Little Lamb
Posts: 28
Joined: Fri Jul 30, 2004 12:24 am

Post by Little Lamb »

jumpyowl,

Wow! I could have something else entirely. I just started my own diary of different pains I experience with standing all day long. The last time I had the leg jerking was Sunday. Sunday is my day off. I was very surprise my legs jerked the way they did. Normally I never experience soemthing when I don't stand all day. I'll have to keep an eye on this. I'm also keeping a diary of when I get the leg jerks. Maybe all of it has some kind of connection with something else.

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

Please try to answer,

Post by jumpyowl »

the following questions, Little Lamb:

1/ Try to describe the feelings in your legs when they bother you:

do you have a/creepy, crawly feelings that do not let you rest?
b/ do these feeling start when you are resting?
c/ do they stop when (and while) you move your legs?
d/ do they come in the late evenings mostly?

Such feelings as described in a/ are called paresthesia They cannot be measured.

Involuntary contraction of muscles, twitching, when occur during sleep usually you are not aware of it. These can be measured by sensors attached to your legs during a sleep study. They also disturb sleep (an event called arousals). However, one is not conscious of it because they do not wake you up completely (just disturb the sleep pattern). This penomenon is called periodic limb movements (PLM).

2/ How well do you sleep? Are you still tired after several hours of sleep? This happens when you have PLM. (You may want to take a sleep test later on when your symptoms get to be daily and more severe.)

Do you have insomnia and if so what type, cannot gol to sleep? or wake up too soon?

3/ How frequent and severe are your symptoms? Do you have pain? (apparently not.).

You stated that you may have low iron.

4/ a/ what is your ferritin level? Is it lower than 50 mg/L? (or mcgm/ml)

Iron deficiency could be the culprit in your case. If this is so, you still have RLS but it is due to iron deficincy therefore curable!

To correct the iron level is not an easy business unless you have very low iron levels (< 20/mcg/ml). Let us know what your ferritin level is.

b/ how about magnesium? here the important variable is the calcium/magnesium ratio. Deficiency in magnesium or too low Ca/Mg ratio can cause cramping in the muscles, especially in calf muscles.

5/ Caffeine, nicotine, alcohol: Are you a coffee drinker and do you smoke? Do you drink alcoholic beverages regularly?

6/Are you on medications: antidepressants and/or antihistamines, or any type of dopamine antagonist?

If you could answer all these questions I think we could diagnose your problem more accurately and with more certainty than an average family physician, rheumatologist, or even neurologist :wink:
Jumpy Owl

Little Lamb
Posts: 28
Joined: Fri Jul 30, 2004 12:24 am

Post by Little Lamb »

Feelings in legs:
Something seems to be moving within my legs. My foot twitches. Sometimes it twitches up and down, other times side to side. Last night I had both of those, and haven't had that happen before. Last night it didn't last all that long.

Creepy crawly feeling - I guess you could describe it that way.

Yes, the feeling starts when I am lying down to go to sleep. I read before I go to sleep. When I shut my light off after a while the twitching starts, but it doesn't happen all that often. I had it last Sunday and again last night.

It does stop when I move my legs. I don't bother to do this. I just wait it out, wishing it would stop.

It only comes when I lie down to go to sleep. Other times it may wake me up. It only happens in bed.

How well do I sleep? It depends on how tired I am. Early in the work week I wake up before the alarm. As the week goes on, I sleep better. Maybe I should start keeping notes on that.

I don't believe I have insomnia. Sometimes I do wake up too early and cannot go back to sleep, other times I have no problem. As long as I don't worry about what time it is, I'm fine.

No, I don't have pain. It's just very uncomfortable and annoying.

I shall get back to these questions. Gotta go!

Little Lamb
Posts: 28
Joined: Fri Jul 30, 2004 12:24 am

Post by Little Lamb »

Ok, now where was I?

I don't know what my ferritin level is.

I don't know about magnesium.

I do not smoke, haven't for quite sometime, I do drink coffee. I have 2 cups a day for 5 days (when working) one cup the other 2 days when I'm off and I love chocolate.

I do take Alegra D twice a day.

My summary with rls is people who have it, don't move their legs much so maybe it's from not moving legs enough. I could be wrong. I haven't read all the posts here yet.

Do people who are active get this?

What about my case of rls?

Little Lamb
Posts: 28
Joined: Fri Jul 30, 2004 12:24 am

Post by Little Lamb »

You also mentioned Tylenol pm contributes to rls. At one time I took that and still do when needed, but one time when I was having the rls frequently a couple of years ago, I did take the tylenol pm and both legs got jittery at the same time. I never had that happen before nor since. Maybe all I have is PLM. I suppose time will tell.

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