Replies to This Discussion

Permalink Reply by Mary Callahan on January 31, 2011 at 3:43pm

Judy, thanks, I do prefer to check the nutritional deficiencies first as I don't usually tolerate most medications. I am going to follow thru on the low ferritin levels and see how and if treating them will help. I have had the PLMS for well over 2 years that I know of, just didn't know the movements had a name. I kept asking my doctors about it, but none of them ever paid any attention. I was also complaining of leg cramps at the same time. They would only check my blood levels. And never connected the low ferritin to RLS. But they weren't sleep doctors either. 

I have just started cpap this past December 3rd. And actually some of the nights the PLMS has actually been worse than ever before. And the starting at 3:30pm leg pain/dull ache, etc seems to have just started in the last few months. 

But at least now I know another reason why I have such a hard time sleeping and waking refreshed. Sort of helps putting more puzzle pieces together that makes more sense.

 

Do you know if treating iron deficiencies in RLS, can also help the PLMS? Or does treating the PLMS with some sort of medication would help the RLS?  Not sure how the 2 are connected. Thanks!

Judy said:

 AND my experience has been that regardless the level of RLS/PMLs the majority of sleep doctors, if OSA was also detected, is to script CPAP and wait to see if CPAP therapy reduces or eliminates RLS/PLMs. My understanding is that is because the leg movements/jerks COULD be the result of sleep disturbances from apneas, hypopneas or even respiratory efforts as a cause. Certainly I would consider checking via my doctor for various nutritional deficiencies before resorting to meds w/possible side effects of their own.

• ▶ Reply

Permalink Reply by Judy on January 31, 2011 at 4:33pm

To be truthful, I haven't checked into the PLM/RLS situation much or any too deeply. Requip was scriped at one point. But that was before being switched to a bi-level. Given I have Crohn's disease I don't "jump" on starting a med unless I have to and at that point in time I wasn't convinced that was the way for me to go. Just as my sleep improves and smooths out something else crops up to throw a wrench in the works and sleep goes to heck in a handbasket again. The latest is A fib and meds for that. *sigh* Appears the A fib is under control and tapering off one of the A fib meds - a med that often interferes w/sleep and the gut.

 

IF I remember correctly, potassium, iron, magnesium are three items that a deficiency can aggravate or cause leg cramps, etc. but that is IF I remember correctly. Hell, try a bar of Ivory soap under your sheets at your feet.

• ▶ Reply

Permalink Reply by 99 on January 31, 2011 at 5:16pm

i know garlic removes iron from the body, if take both they should be at opposite ends of the day
Mary Callahan said:

Judy, thanks, I do prefer to check the nutritional deficiencies first as I don't usually tolerate most medications. I am going to follow thru on the low ferritin levels and see how and if treating them will help. I have had the PLMS for well over 2 years that I know of, just didn't know the movements had a name. I kept asking my doctors about it, but none of them ever paid any attention. I was also complaining of leg cramps at the same time. They would only check my blood levels. And never connected the low ferritin to RLS. But they weren't sleep doctors either. 

I have just started cpap this past December 3rd. And actually some of the nights the PLMS has actually been worse than ever before. And the starting at 3:30pm leg pain/dull ache, etc seems to have just started in the last few months. 

But at least now I know another reason why I have such a hard time sleeping and waking refreshed. Sort of helps putting more puzzle pieces together that makes more sense.

 

Do you know if treating iron deficiencies in RLS, can also help the PLMS? Or does treating the PLMS with some sort of medication would help the RLS?  Not sure how the 2 are connected. Thanks!

Judy said:

 AND my experience has been that regardless the level of RLS/PMLs the majority of sleep doctors, if OSA was also detected, is to script CPAP and wait to see if CPAP therapy reduces or eliminates RLS/PLMs. My understanding is that is because the leg movements/jerks COULD be the result of sleep disturbances from apneas, hypopneas or even respiratory efforts as a cause. Certainly I would consider checking via my doctor for various nutritional deficiencies before resorting to meds w/possible side effects of their own.

• ▶ Reply

Permalink Reply by Kay Day on February 1, 2011 at 1:23pm

Hi Mary,

In addition to sleep apnea, I have severe RLS and PLMs. I have been an RLS Foundation Support Group Leader for 6 years.

 

Here are three web sites that provide lots of information about both conditions:

www.rls.org, click on Support Groups, click on Find a Group or Contact, and enter your state or province. If there is not a support group or a contact in your area, check the surrounding states.

www.wemove.org, scroll down the list on the left side of the page to RLS, click on it, and you'll find lots of information there.

www.rlshelp.org, the web site of  the Southern California RLS Educational Support Group. Their Medical Advisor is Dr. Mark Buchfuhrer, who is a member of the RLS Foundation Medical Advisory Board.  

 

That should keep you busy for a few hours! And distraction is one of the techniques I use so that I take less medication during the day.

 

Life-style changes can, but do not always, help alleviate the intensity of the RLS and PLMs.

1)    If you consume caffeine (including chocolate), gradually decrease over a 3-4 week period until you’re off caffeine completely. It may take an additional 2-3 weeks to completely get it out of your body and notice any decrease in your symptoms.

 

2)    Start good sleep hygiene. The RLS Foundation has a brochure you can print for free under Publications on their web site.

 

3)    Stop all antihistamines you may be taking. All of them aggravate RLS and PLMs.

 

4)    Check all medications and supplements you are taking to see if any of them aggravate RLS and PLMs. Read all the fine print on the info sheet that came with the medication and research supplements on the internet.

 

5)    Work on decreasing your stress. We all have stress, and it greatly aggravates RLS and PLMs.

 

6)    Exercise moderately (at least 4 hours prior to bedtime). Too little or too much exercise aggravates RLS and PLMs.

 

7)    Find a doctor familiar with the treatment of RLS and PLMs or who is willing to read the “Medical Bulletin” from the RLS Foundation about treatment and work with you on finding a solution to alleviating your symptoms.

 

I fired one of my sleep medicine doctors because he would not increase my medication. According to RLS research, 0.75 mg of my medication is the optimum dose for 95% of the people who have RLS. He wouldn’t increase my dose, even though  my symptoms were breaking through about 6 hours after I had taken it. I found another doctor who was not familiar with RLS treatment, but he was willing to learn. Over a one year period we worked together to find the right medications and the right doses to alleviate my symptoms. I take a half dose at 4 to 6 p.m., depending on how my legs feel, and a full dose at bedtime. Hooray, I can sleep at night. I don’t flail around and hit my husband in the face or nearly kick him out of bed! After several years of sleeping in separate bedrooms, we sleep in the same bed now. That’s a real bonus!

 

Good luck in finding some solutions to your RLS and PLMs. In many cases, the symptoms can be decreased or eliminated with the proper treatment.

• ▶ Reply

Permalink Reply by Rooster on February 1, 2011 at 2:24pm

Excellent post Kay Day! Thank you.

 

About the antihistamines, my doctor said the nonsedating types are OK. What information do you have on that?

• ▶ Reply

Permalink Reply by Mary Callahan on February 1, 2011 at 2:35pm

Thanks so much Kay for all the info! You said it would keep me busy for hours, I think from the quick look I took, it could be days!  My sleep doctor is suggesting the iron infusion route since my ferritin levels are below 10. And he is trying clonazepam as well, since I have really bad insomnia as well as sleep apnea. Since I keep a close watch on my numbers, I will know if the clonazepam is hurting the sleep apnea.

But I hope to do my 'research' as well, so I can understand what it going on. I like to give blood, but now see that I should not be doing that any longer. And the thought of giving up chocolate, Yikes!  Thanks again for all your suggestions! 

Kay Day said:

Hi Mary,

In addition to sleep apnea, I have severe RLS and PLMs. I have been an RLS Foundation Support Group Leader for 6 years.

 

Here are three web sites that provide lots of information about both conditions:

www.rls.org, click on Support Groups, click on Find a Group or Contact, and enter your state or province. If there is not a support group or a contact in your area, check the surrounding states.

www.wemove.org, scroll down the list on the left side of the page to RLS, click on it, and you'll find lots of information there.

www.rlshelp.org, the web site of  the Southern California RLS Educational Support Group. Their Medical Advisor is Dr. Mark Buchfuhrer, who is a member of the RLS Foundation Medical Advisory Board.  

 

That should keep you busy for a few hours! And distraction is one of the techniques I use so that I take less medication during the day.

 

 

• ▶ Reply

Permalink Reply by Kay Day on February 1, 2011 at 7:44pm

Thank you, Rooster.

 

I am always wary of blanket statements like "the nonsedating types are OK." Everybody reacts to medication differently. As to the nonsedating types of antihistamines, the general concensus is that most people with RLS and/or PLMs can't take them. However, you won't know until you try. And if you can't, you'll  know usually within an hour because your legs (or which ever body parts have RLS and/or PLMs) will start dancing, jumping, jerking, have ants crawling in them, cramping, pain, or however your RLS/PLMs manifest themselves. I would carefully check the fine print in every medication and supplement I were taking before taking even a nonsedating antihistamine. There could be a interaction between them. And you can go to the www.rlshelp.org and check their up-to-date list of medications.

Rooster said:

Excellent post Kay Day! Thank you.

 

About the antihistamines, my doctor said the nonsedating types are OK. What information do you have on that?

• ▶ Reply

▶ Reply to Discussion

• ‹ Previous
• 1
• 2
• Next ›
• Page