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Fibro? restless leg? insomnia??

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Posted 7/29/2008 2:52 PM (GMT 0)
Good Morning everyone,

 

I have a question. Lately, I have been experiencing a tensing up feeling, usually hits in the evening around 8pm.  I have to keep clenching and unclenching my legs, they feel like an overwound toy?  I dont really know how to explain it.  When I go to bed, it continues, and it is impossible to go to sleep.  I can't seem to keep my legs from having to move constantly.  Is this what they call Restless Leg Syndrom???  I am not on any new meds, I tried the melatonin and had no outstanding results as far as sleeping goes...but this leg thing has been going on for a while now....very much prior to trying the sleep aid.

Is restless leg part of fibro? For those of you who have this, is there any relief at all?  I am going on 9 days of absolutely horrible sleep and it's really getting to me...I start feeling like there is something new going on with my health, then of course the fibro flares..etc etc etc sad

 

Thank you in advance for any help on this

 

Gentle hugs

Diane

 

Posted 7/29/2008 4:45 PM (GMT 0)
Diane, restless legs is a symptom of fibro...are you surprised?  sad    Have you tried just walking around the house a little?  I know that sometimes I get fidgety and have to get up and move around.  I feel like I have to stretch my legs as taut as I can, too.  (I'm usually clenching my teeth together at the same time.)  I almost feel like I could scream.  But, if I walk around and find something different to do that will occupy my mind, it seems to go away. 

 

If this doesn't work, see your doctor.  There is medication to help with this.  I know others have this problem on this forum and will be along soon to help you.

 

Sherrine

Posted 7/29/2008 4:52 PM (GMT 0)

Diane,

I have fibro and restless legs.  Luckily, it only flares up occasionally but when it does it can be very uncomfortable.  I have spent the night in my rocking chair, using my feet to push off the floor and many nights pacing the floor to find relief.  I am luck it goes away after a few days.  You should talk with your doctor, there are good medicines for restless legs.

I hope you can get some relief soon!

Meggie

Posted 7/29/2008 5:08 PM (GMT 0)

Diane,

I have FM & restless leg syndrome along with it. When my symptoms get bad, I take Quinine caps prescribed by my doctor. Usually if I'm overactive during the day they are worse. I've tried the meds for restless leg and eventually had to change for other reasons, but just take a Quinine when it's bad and it helps.

kaymac

Posted 7/29/2008 5:17 PM (GMT 0)

Thank you Sherrine, Meggie and kaymac

I am not surprised that it is apart of fibro.  I am going to try walking this afternoon, even if just for 10 min.  My problem is that by mid afternoon and on, I go downhill and have problems walking at all.  I will try walking the floors if it happens again tonite, it will be reminiscent of early motherhood!  I will try the rocking chair too...(never even thought of that)  This has been going on EVERY night for about 9 days now...what a terrible ordeal this is...this fibro thing just keeps getting bigger it seems

SHerrine,

Yes..forgot to add the clenching of teeth thingy.  Last night while we watched a movie...Robert says out of the blue " are you grinding your teeth?"  tongue tongue   and I was, and didnt even know...I was focused more on the antsy, restless feelings in my legs.

I will go see the doctor if I dont get a break in this episode, I have had it before, but it never lasted this long, or was this intense.

Thanks again, Diane

 

Posted 7/29/2008 5:28 PM (GMT 0)
The medication for that is called mirapex. I tried it, but it made me worse. But that doesn't mean that it wont work for you. There is another one but I can't remember the name, it starts with an 'r'.

I hope that you get relief soon Diane, it is not any fun when you can't hold your legs still. Some times I feel like I want to run so hard that they can't move anymore. I have heard that walking helps. I myself haven't had this problem in a long time. I shouldn't have said that though, with my luck it will come back.

best wishes to you,
luv and hugs, Karen...
Posted 7/29/2008 6:46 PM (GMT 0)
My leg issues have been going on 11 months. I don't seem to describe the creepy crawling or the urge to move. For me its a deep aching pain and also begins later in the day and every night wakes me up. I stretch, I walk, I take warm baths, I use heat, I use topical creams sad sad sad . I will try the quinine and see if that works. When I move my legs I do get relief.  The leg pain is the worst for me.

Hope u all feel better

Kimb

Posted 7/29/2008 8:00 PM (GMT 0)
I have had severe RLS for about 15 yrs now.  it was one of the first symptoms I had with the fms. I have to take medication daily for the rls or I pay for it and get zero sleep.  and of course, the less sleep you get, the worse your fms is. 

I did take that new prescription for a while(you see the commercials on tv, but I can't remember the name), but really couldn't afford it even though it did help me.  I went back to taking Sinemet, 2 pills every evening before bed.  if I take the pills early enough I don't have any problems, my legs are still.  if I am late taking my pills, and the RLS is already acting up, taking the pills really doesn't help me much.  I have to take them before the feelings start. 

I did try some homeopathic type things that supposedly help with rls, but they did nothing for me except take money out of my wallet.  prescription meds is the only thing that has helped me deal with the rls.  I would rather have more fms pain any day then to have to deal with the RLS.  I can sleep when I have pain, usually.  I can't sleep with rls.

it's an awful feeling to be so exhausted you can't keep your eyes open, but unable to sleep because of all the intense feelings in your legs.  it is more then uncomfortable.  it can totally screw up your whole life because of that lack of sleep.  I do find soaking in a warm bath before bed can help with the intensitity of it.  my husband knows if I am on the couch or in the tub in the middle of the night, my rls has been flaring. 

Posted 7/29/2008 8:22 PM (GMT 0)
Diane, I've only experienced a little of that a few times. Can't imagine every night for 9 days. If it doesn't go away soon I hope you call the doc.

 

Kellie, have you tried getting help to pay for your meds???

 

I hope the restless legs stop for all of you.

 

luv and hugs

Marlee

Posted 7/29/2008 8:31 PM (GMT 0)
hi marlee...I haven't sought out help in a long time.  when I was in therapy my therapist gave me lots of samples, which is how I was able to take the Mirapex (thanks for the person who triggered my memory).  once I was released from therapy I went back to the Sinemet because it was a fraction of the price.  then walmart started their $4 plan, and that helped  with all my med costs too.  right now the only prescriptions I am taking are the Sinemet and for tramadol.  so my med costs are a fraction of what they used to be. 
Posted 7/29/2008 8:32 PM (GMT 0)
I had my first bout of rls last year about this time as I was flying home from Honolulu. I don't mind flying, but talk about an excruciating 13 hour flight!! I finally woke up my sister-in-law (an RN and fibromite), told her what was going on and she said "oh, sounds like rls!", and went back to sleep. Gee, thanks :) My doctor put me on Sinemet, but I have rls infrequently, so I don't take it often.

I think the other drug you all are thinking of is Requip. My aunt takes that for rls and she says it's a godsend.
Posted 7/29/2008 9:03 PM (GMT 0)
ah, thank you, you are correct, it is Requip, not Mirapex that I took.  love that fibro fog!

I just got back from vacation myself.  9 hour flights from AK to NM are killer on the legs and RLS.  I take sinemet before I get on board.  forced to sit still is just a big ole invite for the RLS to move in and make you miserable.

Posted 7/29/2008 9:05 PM (GMT 0)
When I'm traveling on long flights, I not only do the stretching exercises that are in Fibro 101, but I also get up and walk in the aisle.  They do allow that...especially on long flights like yours.

 

Sherrine

Posted 7/29/2008 9:53 PM (GMT 0)
Had I known at the time what RLS was or what it felt like, I would have been tap dancing in the aisle to get some relief :) I couldn't figure out why it felt like my legs wanted to take a walk and thought it was because I was overtired. I know better now!
Posted 7/29/2008 10:29 PM (GMT 0)
That was a big complaint when I wasn't feeling all that great last month. I love to do digital scrapbooking, but I coudln't sit at the computer. My body felt so tense, and the ache in my legs got worse. I didn't realize it might be rls. I thought with rls you got spasms that moved your legs.

It sounds horrible. I hope you get relief soon Diane!
Posted 7/29/2008 11:27 PM (GMT 0)
I have a mix of symptoms.  some times it is "just" an ache. (not belittling the ache, it's awful!!!) sometimes my legs tremble. sometimes all I can do is get up and walk around.  they also will kick out on their own accord.  I have spent nights walking the floor crying out of frustration because I am so exhausted...all of the symptoms are extremely uncomfortable.

Posted 7/30/2008 11:20 AM (GMT 0)

One word for you MAGNESIUM.  I have suffered from RLS for about 9 years, it started when I was pregnant with my youngest.  I started taking magnesium for it about 4 years ago, and I rarely have a problem with it anymore.  The only time it flairs up is when I am low on magnesium.

You can get a magnesium supplement for a low price just about anywhere that sells vitamins.  Better yet, a calcium/magnesium combo is best.  I actually take a cheapo mag. capsule, and take a Tums along with it. 

I have a friend who was having trouble with back spasms.  I gave her magnesium, and she was amazed at how much better she felt the next day.  I don't know the scientifical explanation about why it works, but it does.

Melatonin won't help RLS, but it does help with sleep.  And we all know how important sleep is!

Posted 7/30/2008 1:29 PM (GMT 0)
Thank you soooooooo much for all of your help!!

 

I have printed out this page to show to my doctor.  I am going to see my family doc instead of the rheumy, because as I had mentioned before, my rheumy is not very compassionate and would probably say what he always says " nothing I can give ya"

I'm getting desperate for sure, last night I had no symptoms, and was extremely tired, went to bed, and then it started all over again sad    Suffered it out for 1 1/2 hours...got up, took 9 mg melatonin, did some walking around and used the rocking chair like someone had said.  I lay in bed again for a long time still, but eventually slept.  I feel like there is something wrong with me.  Dont feel good at all.  Maybe it's just the fatigue, not sure, but havent felt right for days now.

 

Thanks so much for you support, I will update you when I get to see my doc

 

Hugs

Diane

Posted 7/30/2008 9:09 PM (GMT 0)

the magnesium hasn't helped my rls at all.  I started taking the malic acid and magnesium about 6 weeks ago now, and I haven't noticed any change in my rls.  I am feeling less pain from the fms, and not as tired, but my rls is still bad. 

maybe it doesn't work if you are taking malic acid with it?

Posted 7/30/2008 10:27 PM (GMT 0)
Well Di I could use the hammer tonight to give you some restful sleep but I snuck it into Sherrine's bedroom not long ago to replace her rubber one. SSSHHHHHHH don't tell her, I'm waiting for her to use it on herself.

 

Be better.

 

Love Marlee

 

 

Posted 7/31/2008 10:18 AM (GMT 0)

Shhhhhhhh Sherrine need not know ya took it, just sneak it back after you bop me with it.  tongue  

welll..it is just after 6am, been up since 4:30ish, Rob made me eat some veg soup last night...then I took my last 3 xanax...and I think I slept from about 10pm - 3am getting up only once. I figure I probably got at least 5 hours sleep, but now the fibro pain is bad, which of course I was expecting.

Tomorrow morning I have apptmt with family doctor, and I'm trying not to get my hopes up too high, but will make a list of all I have learned as far as meds go, maybe Ican get her to increase the xanax..currently taking .25 mg twice a day, obviously that dose is too low.  I figure she will probably know more about treatment for fibro and ra than my rheumy does, because of her husband being dx earlier this year with r/a and fibro.

Sorry I havent been around much lately, I just feel so awful.  Will make more of an effort today to distract myself from my misery. 

Have a good morning

Hugs, Diane

Posted 7/31/2008 11:28 AM (GMT 0)
good luck tomorrow diane. I only got a few hours of sleep myself, it's 3:30am here. I had a hard time getting to sleep in the first place, and then only slept about 4 hours. tomorrow/today is going to be a long day.
Posted 7/31/2008 12:43 PM (GMT 0)
I must not have hit you hard enough. devil

 

I hope the doc does something for you this morning.

 

luv and hugs

Marlee

Posted 7/31/2008 1:04 PM (GMT 0)

Kelliek, how much magnesium are you taking?  The Malic acid won't affect it, so don't worry about that. 

You might need to take more magnesium, or try a combo mag/calcium supplement.  Calcium and magnesium work together.

I hope it helps you as much as it helped me!  Take care!

Posted 7/31/2008 11:33 PM (GMT 0)
I have RLS really bad and the doctor gave me Requip and that has been a lifesaver for me. I usually have to take it by 4:oo pm as my legs get so bad.

I am new here, just joined and I hope you all have abetter day than today.
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