Can't take much more of this

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Can't take much more of this

Postby Elliott » Thu May 09, 2013 3:06 am

Hi, everyone. As you know, I'm new to this board and I'm desperate for help.

I'm a 43 year old female who only started getting RLS after I began taking anti-depressants (Effexor, which I stopped and now, Cymbalta). Over the course of the past few years, my RLS has gotten worse, although I've been able to keep some kind of handle on it until now.

For me, it's a matter of my legs (and my arms occasionally) that want to stay up and party all night - especially when I'm bone tired. In the past two weeks, I've managed to get less 10 hours of sleep total. I had a late night of working the Sunday before last and didn't get to bed until midnight. Since then, it's become a snowball effect...I get more tired every day and, because of that, my RLS kicks in every night. I've avoided "bad" foods hours before bedtime. I've tried Ibuprofin....which actually works quite well for me when I'm having a mild attack. I've taken OTC meds to get "restful legs". Believe it or not, that helped me get a single good night of sleep...but hasn't worked since. Not even a little. I have Lorazapam that I take for anxiety - that's hit or miss because it can leave me like I am right now...exhausted in the extreme, but totally unable to get to sleep.

I feel trapped and exhausted and I'm at the end of my rope. IS there anything on the planet that can make this stop? Ideally, getting off of the Cymbalta will help....and that's a process that I'm working on with a super-slow taper schedule....but I guess what I'm looking for is for someone to offer me something that I haven't been able to find in the Google jungle. So much information out there, but almost no guidance. :cry:

Elliott

I appreciate anyone's input. And I apologize for any typos...I'm working on 20 minutes of sleep since last night at 11pm :x
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Re: Can't take much more of this

Postby ViewsAskew » Thu May 09, 2013 4:02 am

I feel you tiredness! And have been there and it is NOT fun!

Stopping the Cymbalta may or may not affect it. You may just have it - it progresses for many of us, unfortunately. So, best place to start is with the following:

1. Make an appt ASAP with doctor and have bloodwork done. You want both hemoglobin and serum ferritin.
2. Be VERY careful with OTC things - dipenhydramine is often in OTC sleep preparations and it makes WED/RLS worse in most cases.
3. Sounds like you're ready to stop the Cymbalta. And, while it may help, you won't know for quite awhile since you're doing a slow taper. You have to decide if you want to use prescription drugs or try non-prescription methods.

There are not many non-prescription things that we know a lot about. There are a few to try, but you're really on your own in terms of dosing (especially because they are not regulated). We also don't have any studies, so there's not much assurance regarding if things work for more than a few isolated people. Many people choose to go this route for other reasons, though. Check out the non-pharm section and read the recent posts about kratom, poppy-seed tea, l-tyrosine, amino acids, and d-ribose for drugs and supplements you can take that do not currently require a prescription. Hot baths, hot/cold baths, massage, the foot treader bed solution, and similar things may help you cope, too.

If you decide to go the prescription route, you might want to start with the anti-seizure category until you get your blood work results. Lyrica, gabapentin, and Horizant (there is a shortage now, so not likely to start there), all help many. If your ferritin is at least 100, the vast majority of people have success with Neurpro, ropinerole, or pramipexole.

To learn more about the options, the bloodwork, etc, the WED Foundation has many great articles and brochures. Take the link in my signature and you will find links in that post to many of them.
Ann - Take what you need, leave the rest

Managing Your RLS

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Re: Can't take much more of this

Postby Polar Bear » Thu May 09, 2013 9:30 am

Ann's excellent post give you the way to go. If you decide to try the prescribed medication route then I hope your GP is WED aware or at the very least is willing to learn and work through this with you and the link in my signature provides a good document for treatment discussion.
Please keep us informed of how you are getting along.
http://www.willis-ekbom.org/about-rls-wed/publications
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Re: Can't take much more of this

Postby Elliott » Thu May 09, 2013 11:48 am

Thank you so much for your information, I'll call my doctor today :)

I do have one other question for you:

I know that there are things that can make WED/RLS worse and I do my best to avoid them. Does anyone know if symptoms can increase when you have PMS? My assumption was that it made it worse for me personally because I tend to get more fatigued during that time. But now I'm wondering if it's a known trigger for women in general.
Elliott
 
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Re: Can't take much more of this

Postby Polar Bear » Thu May 09, 2013 3:59 pm

My understanding is that the hormonal cycle can have an effect on the WED symptoms, but as always everyone is different and for some ladies it doesn't make any difference.
http://www.willis-ekbom.org/about-rls-wed/publications
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Re: Can't take much more of this

Postby ViewsAskew » Thu May 09, 2013 7:30 pm

Elliott wrote:Thank you so much for your information, I'll call my doctor today :)

I do have one other question for you:

I know that there are things that can make WED/RLS worse and I do my best to avoid them. Does anyone know if symptoms can increase when you have PMS? My assumption was that it made it worse for me personally because I tend to get more fatigued during that time. But now I'm wondering if it's a known trigger for women in general.


I never used to notice it, but I sure do now. For me, it's about 10-12 total days. 6-7 before and during.
Ann - Take what you need, leave the rest

Managing Your RLS

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.
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Re: Can't take much more of this

Postby badnights » Fri May 10, 2013 6:02 am

I also get worse WED/RLS symptoms for 4-5 days, before and sometimes into the first day or so of my period. It's not every period for me; some are fine. It's not uncommon for women to notice a connection, though perhaps the timing is different for some. The worsening probably has the same cause that makes WED/RLS very common among pregnant women, though no one knows what that cause is. Women who get it during pregnancy may never get it at any other time, but some of them see it re-appear later in life.

It is possible to try different anti-depressants. Some might not have such an effect as others. Keep that in mind if you ever need to use them again.
Beth
AUGMENTATION http://www.willis-ekbom.org/document.doc?id=2324
viewtopic.php?f=5&t=6532&p=61601#p61601
Discussion Board moderator's posts do not represent the opinion of the WED Foundation & are not medical advice.
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Re: Can't take much more of this

Postby M&M510 » Sat Nov 16, 2013 6:20 am

Regard's to your questions about RLS during menstrual period. I don't know if medically if it makes it worst, but I do know a week before my cycle is to start. My energy is non existence, and my RLS symptoms are extreme until my cycles is over. I started taking a multivitamin w/iron to help. Going to sleep on a regular schedule has help, I also started a regular daily exercise regimen. You really have to monitor what your body's limit without stimulating the RLS & making it worst. I've also removed all caffeine from my diet. I'm on a more healthier diet. I also bought myself a Chi Swinger machine to help with my circulation. It like a machine that helps with leg movement (exercise) without you physically moving your leg constantly and minus the fatigue. I only use it in the day time & afternoon. Using it at night wakes up the RLS. The machine can hurt your back a little if you don't cushion your body with a mat. I also take a shower & do some stretching prior to going to sleep. I currently not taking any medication, and trying to deal with the RLS on my own. So far I doing OK, but I don't know how my body would react on my next cycles. I don't know if that will work for everyone, but it has help me so far.
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Re: Can't take much more of this

Postby badnights » Mon Dec 02, 2013 8:25 am

The tricks you use are all good ones. (Except I don't what a Chi Swinger is)
Other things that can help right before bed, or if you get woken up by it, is doing leg lifts - lie on your back and raise one leg about 6 inches, and hold for 20 long seconds, raise it to about 30 degrees for 20 seconds, 60 degrees for 20 seconds, then repeat with the other leg.

Or, stand on your toes and bend your knees (do a squat), as low as you can stand it; hold for one minute.You need good balance. Repeat if necessary . Then go to bed immediately.

Also, when you go to bed, I find it helps to have a pile of pillows so that I can lie on my stomach, with my legs bent and spread apart (like a frog), and feet bent, even toes bent, arms curled under me/the pillows and bent, so I am getting stretches in all those muscles, also I can keep a bit of tension in my legs, as if I'm about to push off; this can keep the symptoms at bay long enough to fall asleep.

Hopefully you can hold off using medication for some time yet, and if you use it, maybe you can restrict it to the period days.
Beth
AUGMENTATION http://www.willis-ekbom.org/document.doc?id=2324
viewtopic.php?f=5&t=6532&p=61601#p61601
Discussion Board moderator's posts do not represent the opinion of the WED Foundation & are not medical advice.
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Re: Can't take much more of this

Postby ViewsAskew » Mon Dec 02, 2013 10:27 pm

badnights wrote:Other things that can help right before bed, or if you get woken up by it, is doing leg lifts - lie on your back and raise one leg about 6 inches, and hold for 20 long seconds, raise it to about 30 degrees for 20 seconds, 60 degrees for 20 seconds, then repeat with the other leg.


I've been using this for awhile and have recently changed it to something that works better for me. I think these work particularly well for people with sensations in their thighs. I don't have sensations in my calves, so not sure it if helps for those.

I've started lifting my leg just a few inches - like 3 degrees. Hold for 20-30 seconds. Then move it up only another degree, very slowly. Because you're barely moving it, you have much more resistance to the movement than if you move it a lot. Hold, repeat. For me, goal it to get to the point the quad muscle is exhausted and almost shaking.

Sometimes I have to "wake" up first. I get up, open my eyes, walk around for a few minutes, then go back to bed and try it. That act of alerting myself, then doing the exercise (with eyes open), can sometimes handle worse symptoms. And, when still not working, I stretch my hamstrings by lifting my leg high and gently pulling it as far as I can without hurting it. Then I do side leg lifts, and last, and I stretch out my hips by stretching my leg first over my body to one side, hold, then over to the other side.

If all of that doesn't work, then I know I just have to get up and can't fall back to sleep.
Ann - Take what you need, leave the rest

Managing Your RLS

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