Restless Leg Syndrome (RLS)

[zeeclass]

In the past few years I've developed RLS.

I did some research and communicated online with a doctor who had written about RLS. He suggested that I try taking extra iron. My Ferritin level has always been on the low side of normal, so I figured it couldn't hurt.

I know that iron can be constipating and can upset your stomach so I searched for one that might be easier to take. I settled on Feosol with Bifera. I took it for a month, and had no bad side effects from it. My RLS got much better! Now I barely have it at all!

I also began to notice that if I had caffeine or alcohol, it would make the RLS worse. I usually don't drink any caffeine and I rarely drink alcohol, so when I do have these substances, I really feel it. Over the summer I was in Fiji and tried a small bit of of Kava at the resort where we were staying. Wow, that made the RLS terrible -- the worst ever! I will never drink Kava again!

Recently I finally saw my sleep doctor to discuss this, among other things. She recommended that I take extra iron. I showed her the Feosol that I took. She looked at the label said that it was good and that one pill a day was definitely the recommended dose. She said that nowadays they don't like to give people other drugs (Neurontin, etc) because the side effects just make things worse in general for patients. She said that iron seems to work best. She suggested "pulsing it" depending on my symptoms. For example, take it for a few weeks, then stop taking it and see how I feel. She also said that they are finding that people with RLS should take iron despite whatever their Ferritin level is -- that apparently the Ferritin level isn't necessarily a good indicator.

We talked about side effects of having too much iron. I'm post-menopausal and I don't have any problems with bleeding or anemia, so it's not something I should take every single day for months on end.

I'm getting my Ferritin level checked again this month, so it will be interesting whether it went up.

All I know is that, at least for me, taking the iron has made a huge difference. I really like the Feosol. It doesn't upset my stomach or cause constipation. I just have to be sure not to take it within 4 hours of taking calcium or of eating a calcium-rich food (because calcium interferes with iron absorption).

[SewTired]

I have had no solution for RLS. The iron helped for awhile and then not at all AND I ended up with high iron levels so had to quit. Magnesium and zinc also helped for awhile and then did not. Currently taking low dosage of gabapentin. Doesn't eliminate it, but I'm able to get 4 hours of sleep in a row now several nights a week.

I agree with your doctor for finding a less medical option. Diabetes and weight both exacerbate the condition, but do not cause it, at least in my case. Both my sisters developed the problem before I did (they are younger than me) and all of us had it long before there were any abnormal blood sugars (and youngest does not have abnormal blood sugar). I have found that if I do a 10 minute leg workout a few hours before bed, that it helps. Difficult for me because I have a permanent leg injury, but I worked out some exercises with a physical therapist and that SEEMS to be helping. Just throwing that out there as another option for you.

http://www.ace-pt.org/2016/03/10/ace-ph ... -syndrome/

I don't necessarily agree with this guy's assumptions, but he has some good suggestions as well. The main reasons I don't agree is his assumption that RLS has one cause. The doctor's I've talked to said that RLS is clearly multi-causal which is why one thing may work great for one person and not at all for another.
http://allthingspt.com/2012/03/06/restl ... l-therapy/

Also, pay attention to what conditions seems to be present when your legs first start giving you trouble. For my sisters, their legs are cold. Putting on warm snuggly pants seems to make a difference in stopping the RLS. In my case, my legs get really hot. I recently found those gel pillows cool my legs and reduce my RLS quite a bit. So, keep looking for solutions.

[Sheffey]

I agree with your doctor for finding a less medical option.

Ferrous sulfate supplementation for RLS is a well known medical treatment - https://www.ncbi.nlm.nih.gov/pubmed/17566122

There is nothing "less medical" about iron supplementation. In fact, it should only be done in consultation with a doctor, because too high of a serum ferritin level causes damage to health.

[mkarns]

I take two gabapentin capsules before bed each night.

It helps, but lately I've been experiencing RLS midway through the night.....

Only started when I started using my CPAP machine.

Before that the medicine each night took care of any RLS suffering.

[SewTired]

I take two gabapentin capsules before bed each night.
It helps, but lately I've been experiencing RLS midway through the night.....
Only started when I started using my CPAP machine.
Before that the medicine each night took care of any RLS suffering.

My RLS also increased after starting CPAP. I'm not willing, as yet, to blame the cpap. Haven't had a chance to look at data about the edema someone was asking about in another thread. That said, even if it IS caused by CPAP, I'm not willing to give up the cpap at least until I get a pacemaker. I feel terrible if I don't get AT LEAST the minimum 4 hours and that's just after one night. So, it could be a case that a needed treatment causes an unwanted side effect that you just have to live with.

[Crazy Legs]

Hi,

I have insane RLS, I was on Requip for years and it helped but it also started making me sick to my stomach. Tried sleeping pills and OTC remedies and nothing worked until I tried cannabis before bed. It doesn't stop the crazy legs but it just doesn't bother me now. Think that's why I adapted so well with the CPAP, makes it easy to disassociate with what's happening around, to, on, and in me...

By the time it wears off I'm fast asleep and wake up feeling refreshed and no throwing up from pills. Win-win

Di

[kteague]

Unless it's been formally ruled out, deeming all leg discomfort as RLS may be missing a periodic limb movement component. My take on the increase in symptoms speaks to periodic limb movements, and I feel that worsening symptoms on CPAP is explained by the concept of masking. PLMs occur during sleep, particularly non REM sleep. With frequent arousals from sleep apnea, the limb movements have fewer opportunities to manifest. Once the sleep apnea is treated, there is more consolidation of sleep, allowing the limb movements more opportunity to fully manifest. I'm thinking the disorder doesn't worsen, but rather, the degree of severity is revealed. This does not mean CPAP caused the problem. It merely pulled the curtain back on what was already there.

Here's some links to discussion of masking. FYI, this can also work in the reverse. I was first diagnosed with PLMD, though multiple doctors were convinced I had OSA but just couldn't catch it in the studies. Once my legs were treated and quieted down, the OSA was able to manifest. I feel the best way to see how bad limb movements are after CPAP treatment and to determine if they are disrupting sleep enough to merit treatment is a lab study while using the CPAP at the prescribed therapeutic pressure. Another baseline study without CPAP is worthless - had multiple doctors insist on that and it was a total waste.

How all this relates to RLS with no PLMD I couldn't say.

https://www.ncbi.nlm.nih.gov/labs/articles/14572125/
https://www.ncbi.nlm.nih.gov/pubmed/22105450
https://www.colwiz.com/public/publicati ... y_pressure.

[Bobby269]

On the night of my sleep study. I had what they called RLS. I did not sleep well that night and I had terrible nocturia. I never had RLS prior to that night. My Doctor had my blood tested and my B12 was low. I received injections for a few months. For me low B12 made me feel very weak. Since the injections started I have never had the problem again.
I still have to take 1/2 of a B12 pill each morning.

Edited to add link.

http://www.b12patch.com/blog/tag/restless-leg-syndrome/