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Old 07-01-2003, 09:46 PM   #1
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Post new study suggests cause

I have had RLS all my life and it runs in my family as well. I am 43. I have always been able to find some relief by taking aspirin. Only recently did I discover that other people have it too, but I haven't noticed any posts about aspirin helping.
More background: I am also very sensitive to noises, have terrible short-term memory, I'm on my second bout with adhesive capsulitis (frozen shoulder). I had it once before but on the other shoulder. Very bad PMS sufferer. Also have more energy than most anybody I know. I am always skinny. I am tall. I have never broken a bone either. Just curious if there is a typical type of person who gets this.

I am on Vicodin, but it doesn't help the RLS which I can't get relief from because I can't take aspirin which conficts with the Relafin (sp?) I take for my shoulder problem. Does alcohol help?


[This message has been edited by moderator2 (edited 08-24-2003).]

 
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Old 07-02-2003, 02:05 PM   #2
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Jewels,

First of all, Alcohol will probably make your situation worse.
Secondly, I don't know if there is a typical profile for people with RLS. I've often wondered that as well. Personally I feel that RLS somehow gets triggered by other pains in the body, such as your shoulder pain. I have knee problems and possibly endometriosis, so I'm in a lot of pain. Since that started, I've developed RLS. I also wonder if there is some association with Thyroid disease or blood sugar irregularities. I've noticed that during the day if I get sleepy my legs will start jumping, so it really prevents me from taking much of a nap. You might try Iron supplements (Ferrous Sulfate once a day), Folic Acid (1/day), also Evening Primrose Oil which helps relax muscles.
Drug companies REALLY REALLY need to find a cure for this because it is about as annoying as a bladder infection.
Good luck.

 
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Old 07-03-2003, 02:56 AM   #3
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Thanks for sharing the article. It is promising compared to the help I get from my doctor which so far is none. Hopefully they will have this thing wired within our lifetime. I am 27 at this point. The comment about asprin was interesting becuase I take asprin everday and started doing so a few years ago due to constant headaches. Now that you mention it, my RLS is much less severe since that time, but I still get it bad every now and then. I have never considere that asprin could be helping. Thanks! I read somewhere that Valium and other benzodiazapenes (Xanex, Restoril,Roofies etc.) will suppress the discomfort and alleviate the twitching. I've tried Valium and Restoril independently and they work until the meds wear off. Then you are worse off then if you had not taken the drugs at all. Every person on one side of my family has RLS and we have two known family remedies : put your feet in a bathtub with cold water and leave them there until you can hardly stand it. The colder, the better. The other is to run in place furiously for a few minutes. I find the second method works best when holding a heavy object in each hand such as barbells or a big text book to increase the impact of the exercise. This is no fun when you are dead tired and obviously its hard to explain to anyone who catches you doing it. Anyway, good luck!

 
Old 08-24-2003, 12:13 PM   #4
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Just wanted to call attention to this post again. If Dr. Connor's work stands up to further study (and I hope it does), it should suggest more effective treatments for RLS/PLMD.

There's another, more detailed story on Dr. Connors research "August 11, 2003 - Study Links Restless Legs Syndrome to Poor Iron Uptake in the Brain".

What I wonder is, how important is the blood ferratin level? Some have concluded from Dr. Connors work that the problem is with iron-transport or iron-reception into the mid-brain - which suggests that even if you have sufficient iron in your bloodstream, it just can't get to the midbrain.

How many of you have lower than normal ferratin levels, and have you found relief of RLS/PLMD after iron supplimentation?

~ Z

[This message has been edited by Zazzaz (edited 08-24-2003).]

[This message has been edited by moderator2 (edited 08-24-2003).]

 
Old 08-25-2003, 08:26 AM   #5
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Oops! Thanks for the reminder, Mod2.

To find the more technically detailed story with the title I gave above, search using the following criteria (include the quote marks and plus sign):

[removed}

Best to you all ~ Z

[Giving search instructions is no different than posting
the website. The guidelines allow posting the author
and title of the work. Anyone can think of doing a search.
Giving instructions is neither necessary or allowed.]

[This message has been edited by moderator2 (edited 08-25-2003).]

 
Old 08-25-2003, 03:29 PM   #6
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I have severe restless legs, and twice when I went to give blood they said my blood did not have enough iron for them to take it, but that it was sufficent for my body. Every time my doctor checks my iron it is fine. I think there might be something to this, not being able to get iron to your brain or recptors.

 
Old 08-25-2003, 05:43 PM   #7
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Ferrous sulfate iron is not a good one to take.Many side affects associated with that type. Get the kind called Ferrous Gluconate, it is a much better quality and absorbs better.

 
Old 08-25-2003, 06:46 PM   #8
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zazzaz

I have RLS and I visited a lot of websites looking for an answer (and relief). I now take iron supplements (Ferrous sulfate) only when I need it which is very rarely. I started out having to take it every night just before going to bed or I wouldn't be able to sleep. My RLS has calmed down greatly. For those with the problem of iron absorbtion, it can't hurt to give it a try. Just remember that iron can be toxic. I started with 16 mg which worked for a while but eventually had to up it to 65mg. Now, like I said, I only need it occasionally.
Won't work for everyone.

 
Old 08-28-2003, 07:36 PM   #9
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Quote:
Originally posted by cookiepls:
I now take iron supplements (Ferrous sulfate) only when I need ...just before going to bed or I wouldn't be able to sleep.
Hmmm, that's interesting. I thought it needed to build up in your system - I didn't realise that the iron could help immediatly. That's great that you've found something that works so well!

~ Z


 
Old 09-14-2003, 10:54 PM   #10
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just want to point out, there has been a couple of issues with the body that cause directly or indirectly, however that should be put, that causes or makes RLS worse, there are three minerals that replacing them, can help allviate the issue... But i have ulcerative colitis, and the three minerals, if taken as a supplement or within the right foods would leave me deathly ill, if not, it would put me in the ER. So what works for one doesn't work for all.

 
Old 09-15-2003, 06:12 AM   #11
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Too much iron can cause heart trouble and other health problems. Don't take iron supplements unless you have a blood test to show low iron levels. There is a study out just last week associating low iron in the brain with rls but they caution very strongly against iron supplements unless you have a blood test to prove low iron levels.

 
Old 09-18-2003, 04:08 PM   #12
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Plymouth, you're right to point out the hazzard of taking too much iron.

The problem is that the range for normal ferratin levels is something like 20 to 200 mcg or so. With a ferratin level of, say, 30 mcg, you would be considered on the low end of normal for a person without RLS - but 30 is considered too low for a person with RLS (with RLS, ferratin should be 50 mcg or more). At least, that's what I have read in a lot of RLS publications. So it's kind of hard to figure out whether or not you should take iron if your numbers are borderline. Looking at additional levels, such as transferratin, would give you a better idea, maybe.

I also read that there is low iron in the spinal fluid of people with RLS. And to make matters, worse, the June study claimed that supplimenting with iron won't help anyway, because no matter how much iron you have floating around in your blood, the transport mechanism that moves it into the brain doesn't work properly.

Who knows what's best?! Right now, people just have to experiment themselves to see what works, because no one understands the disease well enough to say exactly what's best.

Good luck to you all ~ Z

 
Old 09-19-2003, 04:58 AM   #13
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Interesting = the posts about iron. I take Permax. It helps as long as I take it. I have severe RLS. The only efective (pill) treatment for me has been to take my permax every night before bed. This was fine when I had insurance. Now that I lost my job thr permax is $11 per pill - I was taking 1.5 per night. I say was because I can't stand the thought that I have to take this stuff for ever.

The beginning of this thread mentioned a possible typical rls profile. I have more energy that I know what to do with. If I don't take my medicine it's common that I will go 2 days without sleep. I have never broken a bone either. I also have psoriasis and am an artist.

 
Old 09-19-2003, 02:12 PM   #14
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Hi Stacker,

What a bummer that your permax is so expensive. Are the pills available in larger doses, so you could buy fewer pills and break them in half to get the right dose? It might save you a few bucks.

Also, I buy some of my meds from an onlime pharmacy. For some items, the price is the same as my local pharmacy, but more often, its 30-60% lower. Check out a number of them, because different pharmacies stock different meds, and aske really different prices. (None of them can sell narcotics, though - they're illegal to put in the mail.)

Good luck. ~ Z

P.S. What medium do you work in? Have you seen Christian Seidler's matricism work? He has a website, it's very interesting.

 
Old 09-19-2003, 07:46 PM   #15
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Zazzaz,

I haven't looked into an on-line pharmacy or driven to Canada for that matter. Thanks for the idea - I'll look into it. Because it is so expensive I've experimented with cutting my doses into halves and quarters. It seems that I can take .5 mg and be somewhat stable (this in comparison with taking 1.5 at times when I had insurance).

I like to work with found objects and acrylic paints. Sometimes I incorporate them together. The operative word there is "sometimes" - I don't give myself enough time to be consistent with my art.

Now to tie the two together. You'd think that if I was getting up every night I would have plenty of time to pursue my hobbies. But this is usually not the case. When RLS gets my up I am not in a peaceful, productive frame of mind. At least not the frame of mind that can jump into something creative. I'm more in the frame of mind to do yard work or rearrange the garage. Of course, these are things that wouldn't make my family very happy. So I do quiet things that distract my mind/attention that also allow my legs to twitch to their heart's content - internet games.

I don't know if others go through the same thing that I do but once I do something to initially distract myself for a while I am then more apt to mentally settle down and apply my energy more creatively or purposefully. Sometimes this initial distraction takes the form of push-ups and knee bends.

 
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