Restless Legs Syndrome - sudden onset

BlueSky72 · Post by **BlueSky72** » Wed May 06, 2009 8:25 pm

I'm getting RLS. I've had involuntary awake leg jerks for some time (thanks to the lovely Effexor!) but in the last week or so I've started developing classic RLS symptoms - and it's maddening isn't it! My arms are just as affected, if not more so. I do plan to come off Effexor (and straight onto another SSRI because I know about the withdrawal effects). I jolly well hope RLS is not here to stay!

I want a drug for it, lol. I have plenty of Iron, and I don't have diabetes or hypothyroidism either. No family history that I know of. I had no residual PLMs in my sleep study - the few I had were apnea-related. They don't really keep me awake. They are just annoying as I lie in bed. I feel like my arms are going to explode if I don't move them. I don't want to join this club... but here I am...

Julie · Post by **Julie** » Wed May 06, 2009 8:30 pm

Maybe you want to talk to your doctor about the sudden onset - it often accompanies other conditions that should be addressed along with "just" relief of the sleeping symptoms. If you do, get back and let us know how it went. Good luck!

Juliebove · Post by **Juliebove** » Wed May 06, 2009 8:36 pm

I had it bad when my thyroid was out of whack. I'd have to get up out of bed, and put weight on one leg, stretching out out behind me, then the other. I never tried any meds for it as I knew the cause.

BlueSky72 · Post by **BlueSky72** » Wed May 06, 2009 8:47 pm

Thanks Julie, I certainly will let you know how it goes. My doctor is aware of the RLS symptoms, but I think she wants to rule out Effexor as the cause. It will be maybe 4-6 weeks before I can start coming off Effexor, so I just hope that waiting won't make a difference to the RLS. I have been on Effexor for 2 years and the involuntary leg jerks only started about 12 months in. They got worse about 18 months in, and now this.

I am not sure what other conditions could cause it (I know it's better to ask my doctor)... from reading about it at the RLS Foundation website it sounds like most of the causes are familial, anemia, thyroid, diabetes and drug effects?? I am tested fot thyroid and diabetes every 6 months, the last one was recent, and I have none of the symptoms. I have more than enough iron and I'd never lose enough between tests to get anemic. I guess it's all about being patient, which I am not very good at.

What do others do to cope with RLS?

Juliebove · Post by **Juliebove** » Wed May 06, 2009 9:29 pm

I just googled Effexor and RLS and apparently it is a symptom of it. My friend took it and got parasthesia from it. I don't think he had RLS but he did have Fibromyalgia.

Sleepy Boy · Post by **Sleepy Boy** » Wed May 06, 2009 10:15 pm

I had RLS before I went on Effexor, it didn't seem to make it worse. I tried Requip and couldn't take it. I now take low dose Mirapex about 2 Hrs. before bed and that works for me..

kteague · Post by **kteague** » Wed May 06, 2009 11:11 pm

Hi. I have RLS and PLMD. Over the last 10 years I have taken Sinemet, Mirapex and am now on Requip. Sinemet and Mirapex both lost effectiveness after a few years and began causing extra movements. When I was on a high dose of Mirapex it caused wild flailing of both my arms and legs, even when just dozing and still aware. Sounds like you're informed about safely weaning off one med and onto another. That's how it was determined that the Mirapex caused my worsening movements. Went off, they resolved. Went back on and when at the higher dose they returned. Went off, the were gone again. Just left with normal RLS and PLMD (whatever that means).

One question on you saying you've got plenty iron - is that based on the hemoglobin and hematocrit in a complete blood count or from a ferritin level? According to my doc, a person can have a normal blood count and still have a low ferritin. The storage iron (ferritin) will keep giving to blood needs to prevent anemia. By the time anemia shows up on a routine blood count, the storage iron is probably quite low. Maybe that doesn't apply to you, but thought I'd throw it out there just in case.

I certainly feel for you. This stuff can be miserable. Are you able to get by on a lower dose of Effexor? When my doc first suggested cutting my Mirapex dose in half, I balked because just knew it would mean miserable nights. Surprisingly, it was more effective at the lower dose than when higher. Was able to continue on it a few more months before needing to switch.

Best wishes in finding what works for you.

Kathy

SaltLakeJan · Post by **SaltLakeJan** » Thu May 07, 2009 1:37 am

Hi BlueSky 72

Hi Bluesky 72 - you are in a barrel of misery. I am well acquainted with PLM. My internist referred to mine as Restless Legs. When I read my sleep study, they called it by the name of PLM. I took Effexor for a couple of years. And, when decided "Enough is Enough." When I read you and Kathy, (KTeague)have used it, and are attributing it to use of effexor.

I am currently taking mirapex for my Restless Leg. It works for my leg, I tell myself, if mirapex stops working, I want be able to stand it. Of course i'll be able to stand it. The thing I don't like is having to take so many drugs.

The best to you, & glad to have you with us.
Jan

BlueSky72 · Post by **BlueSky72** » Fri May 08, 2009 2:46 pm

Thank you everyone for sharing your experiences and for welcoming me so warmly. The legs and arms have been feeling a little better the last couple of nights, and I have no idea why. It's one of those things I will monitor over the next while. If it flares up again I will let you know, so I can start narrowing down the factors and brainstorming what the triggers are. Thanks everyone!

BlueSky72 · Post by **BlueSky72** » Sat Aug 15, 2009 12:47 am

Update: legs are feeling much better now.

Thanks for the support, and I thought I'd get back to you with an update.

I was able to slowly come off effexor with minimal withdrawal ("discontinuation") symptoms. My awake leg jerks went away immediately, thank goodness. I only rarely get flare-ups of RLS now. I don't know what causes it, but it's less of a problem than my other conditions so I am not too concerned about it.

Effexor is not a bad drug per se, but I would recommend people try every other antidepressant before this one - and if you have side effects then come off it. Know that it does cause quite bad withdrawal symptoms and you cannot miss a single dose. I now take Citalopram, and a much lower dose, and I am doing ok. For the first time in 10 years I tell myself that I must fight the depression a bit myself to help the meds along. I have had severe side effects from several antidepressants and I can't rely on them to do all the work on their own. I am also very hopeful that once I start using a VPAP and can get my AHI down, my overall health will improve, including my tendency to regularly have episodes of depression.

Hoser-Eh · Post by **Hoser-Eh** » Sat Aug 15, 2009 2:47 am

Hi BlueSky72, I have been suffering with RLS since I was a child, 40 ish years now. I remember them clearly from way back then.
Anyway, in my sleep study they diagnosed me with severe RLS, and medium to severe PLMD. I know your suffering, I can be sitting watching tv one minute, and basically climbing the walls the next.
I was put on Sinemet CR, and other than feeling doped up in the morning it seems to be working. RLS seems to come in waves, you can go months without an episode, then you will get it every night for months on end.
I haven't done any homework on the Sinemet, but I think it's quite addictive, if I don't take it one night, I will wake up in the wee hours of the morning with some pretty heavy withdrawls.
So for what it's worth, Sinemet CR seems to work well for controlling and managing RLS.

katcw · Post by **katcw** » Sat Aug 15, 2009 4:34 am

My first sleep study indicated that I had RLS, so my doctor put me on Requip. Made the whole thing worse: I started getting Restless Arm syndrome and the RLS seemed to get worse. So I promptly went off the meds and all returned to normal.

I think I didn't have RLS; I have hip pain and move around a lot at night to get comfortable. Anyway, that's my story.

I also am on Citro, and have had no negative side effects.

SaltLakeJan · Post by **SaltLakeJan** » Sat Aug 15, 2009 6:25 am

Blue Sky, I'm following this again because I might learn more about this beastly condition. Mine got worse when my Dr upped the Mirapex. Kathy is the resident expert on PLM's. She is right about the Ferritin levels. Have you had them checked - you said you had plenty of iron. I'm curious, my ferretin plunged suddendly into 7. Could your level have dropped? Anything below 50 is bad news . The fatigue, daytime sleepiness, and nonrestorative sleep that hits a person with low ferretin is not a pretty sight. Be aware of these symptoms if yours reappears.
Non-restorative sleep is a great drain on the body and mind.

I posted on this thread in May, the RLS & PLM's weren't too bad at that time. By the time I reached mid June, I had 846 during a sleep study. Averaged 120 PLM's per hour.

On going depression is a struggle to treat. I know many people who have depression in various forms. The ones I know who appear to handle this mean conditon well do try to work with it as you plan. It is kinda' like RLS and PLM's they do what they want, when they want.

You sound like a practical person who is well aware of the aspects of your life. Congratulations on that, and I hope your depression becomes manageable. I wish the best for you.

Jan

WearyOne · Post by **WearyOne** » Sat Aug 15, 2009 10:14 am

Hi, BlueSky! Glad to hear your RLS is improving. I've never been diagnosed with PLM, but I've had bouts of RLS that come and go for many, many years--sometimes only in my left leg when I'm trying to sleep, other times in all four limbs even when a awake. Yes, RLS can occur in your arms, too! A neurologist once gave me samples of Requip to try, but I just didn't want to start another prescription med. I did find Hyland's Restful Legs helpful (found in health stores, some pharmacies). I take it after the symptoms start and it really helps. I've also found a heating pad helps.

Hope it continues to improve for you!

Pam

DannyP · Post by **DannyP** » Sat Aug 15, 2009 10:46 am

I, too was told that I had Mild RLS by my Sleep Dr. and was put on Requip which helpped a lot and I also am not mucg for taking too many Drugs so when the RLS got better I stopped the Requip and Now I take 2 oz's of Apple Cider Vinegar and a tsp on Honey at night before bed and have had No more problems with the RLS.

Restless Legs Syndrome - sudden onset

Restless Legs Syndrome - sudden onset

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Re: Restless Legs Syndrome - sudden onset

Re: Restless Legs Syndrome - sudden onset

Re: Restless Legs Syndrome - sudden onset

Re: Restless Legs Syndrome - sudden onset

Re: Restless Legs Syndrome - sudden onset

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Re: Restless Legs Syndrome - sudden onset

Re: Restless Legs Syndrome - sudden onset

Re: Restless Legs Syndrome - sudden onset

Re: Restless Legs Syndrome - sudden onset

Re: Restless Legs Syndrome - sudden onset

Re: Restless Legs Syndrome - sudden onset

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