i have restless leg syndrome and am absolutely miserable and so sleep deprived that i cannot even drive or work. it is time to try a presecription drug and i wondered if any of you suffer with this disorder, and if you do, what makes it worse or better and are you taking ferritin and are you taking any prescription medications. if so, how are they helping. i am going on my 6th day of constant (used to be occasional at bedtime and one percocet stopped it in its tracks) no longer the case. i have tried ativan as well as the percecet. i am waiting for my clinician to call so we can try something else. having had severe lyme for 10 years, this is not a new problem, but this is so different, more severe and not responding to the previous used treatments. we will probably try sinemet, or clonodine. anyone out there have any experience with the problem and the treatments? please help, i need sleep.
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Posted by chainsaw joseph (Member # 6611) on :
I just saw a commercial for a new drug just for restless leg syndrome.I am tortuyred by this,it comes and goes but the last week has been hell.Wow is it uncomfortable.Ativan is the ticket for me,usually 1 mg will make it tolerable.Getting up and walking a bit will give temporary relief,very temporary though.I feeel for you,I can relate.I will watch for the commercial for the new drug.
Posted by timaca (Member # 6911) on :
First make sure that your iron levels (read: ferritin level) is normal. Make sure your ferritin level is over 50 ng/mL. If it is less than that, then MAYBE iron deficiency is causing your RLS. It was in me.
If your ferritin level is less than 50, then follow your doctors recommendations in taking iron, having monthly blood draws to make sure you are taking enough iron to make a difference. I was taking 65 mg elemental iron extra a day, and it did nothing. I'm now on 195 mg iron daily, and it is making a difference.
Google articles on RLS and ferritin or iron for further info.
Posted by AlisonP (Member # 7771) on :
RLS is a syndrome of a body hungry for beta-endorphins.
Beta-endorphins are our body's way of handling trauma/pain/etc. The reason why opiates work so well for RLS (at least for a time) is that they go to the SAME receptors in the brain that do the beta-endorphins, and, get this, SUGAR! it all goes to the same place in the brain.
The problem with opiates and sugar of course is it's just a temporary fix and you have drastic ups and downs and one of your brain's ways of saying I want sugar/opiates/something that raises my level of beta-endorphins. And I bet most of us with Lyme are beta-endorphin deficient.
I've only just started reading up on this which is how I remembered about the restless legs because I used to get them SO BAD. It made me INSANE.
The only long term solution I can see is figuring out a way to get the beta-endorphins regulated or raised. This can be done through diet and also laughing, yoga, meditation, sex, exercise...basically all the things that we Lymies don't have the energy for. Srrgh.
The website that I found all this out on btw is http://www.radiantrecovery.com which I'm totally happy to have just found because I am a complete sugar addict and the candida diet is kicking my posterior.
Alison
Posted by lesley1954 (Member # 7626) on :
I've taken Klonapin for five years for restless legs and found it effective and cheap. However, recently I decided I'd like to get off it (concerned about memory problems) so a week ago I switched to Mirapex and am weaning myself off Klonapin. So far, so good.
Posted by WildCondor (Member # 434) on :
Are you taking enough Magnesium?
For any kind of restless legs or twitching neurological symptom, magnesium supplementation is essential. I take Magnesium sulfate injections twice weekly. 1 gram =2cc mag sulfate. I also take Mag tab SR
WildCondor is right. Take magnesium supplements. Also make sure you're ingesting enough potassium. Eat bananas for that. After I started doxycycline for Lyme, my restless leg problem stopped. But I also started taking magnesium, too, since the borrelia deplete it. The problem with the magnesium is that your antibiotics won't work if you take magnesium within two hours of the time you take them. It's hard for me to time my doses while at work.
Posted by bettyg (Member # 6147) on :
I've breaking up this long paragraph into short sentences for those of us with chronic lyme and can NOT read what was written without double spaces between short paragraphs. Betty
[QUOTE]Originally posted by np: i have restless leg syndrome and am absolutely miserable and so sleep deprived that i cannot even drive or work.
it is time to try a presecription drug and i wondered if any of you suffer with this disorder, and if you do, what makes it worse or better and are you taking ferritin and are you taking any prescription medications. if so, how are they helping.
i am going on my 6th day of constant (used to be occasional at bedtime and one percocet stopped it in its tracks) no longer the case.
i have tried ativan as well as the percecet. i am waiting for my clinician to call so we can try something else.
having had severe lyme for 10 years, this is not a new problem, but this is so different, more severe and not responding to the previous used treatments.
we will probably try sinemet, or clonodine. anyone out there have any experience with the problem and the treatments? please help, i need sleep. [QUOTE]
NP, have you ever had a sleep study done to see if you have APNEA, stop breathing when you sleep. Others suggested to me, and I had it done. Yes, I have apnea & restless leg syndrome. Good luck to get.
Posted by staying afloat (Member # 8322) on :
I suffered badly from RLS at bedtime for quite some time before and during the first year or so of treatment. IMHO, i believe that RLS is a form of myoclonus and found that when i took a CaMgK supplement, it was all but eliminated. (wildcondor is definitely onto something...) Mild RLS does return occasionally and under stress as stated above, however, if i supplement, i'm usually okay for a while. However, i have friends whose Bb is well advanced as is their myoclonus and the supplements do nothing for them.
What's good for the goose may not necessarily be good for the gander. You'll have to find out what works for you.
All the best - always!
Posted by docjen (Member # 7510) on :
I have had pretty severe RLS for about 5 years. I had been taking 1 mg. Klonopin at bedtime for it (along with Calcium/Magnesium) for more than 4 years. It suddenly stopped working, and I was back to the agony that you describe. I now take Mirapex, a dopamine agonist. The Klonopin works as a sedative to "calm" the urges and discomfort. The dopamine actually works at the neuro-receptor level to quiet the restlessness. If you have tried the usual supplements (iron, magnesium) and gotten no relief, this might be an option for you. Good luck! I feel your pain!
Posted by Lymetoo (Member # 743) on :
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