Newbie still exploring

[CoachLisaB]

Hi there! I don't have a diagnosis but have experienced restless legs on and off for years. Last night I had the worst bout ever, preventing me from going to sleep for five hours. Earlier in the day, I had taken Claritin D, which contains pseudoephedrine, which I think may have created this scenario.

I'm seeing my GP next month for my annual physical and will be bringing it up to her. I will say that I don't have a good sleep routine, although I do go to bed at around the same time every night. So I'm guessing that getting off the devices and getting myself into a calming space might help. I'm also finally finding some sleep music that helps my general insomnia (post-menopausal, so that's part of it, too).

I don't drink caffeine after 12 noon, don't smoke and, while I do drink alcohol, also try to keep that earlier in the evening. I know there are about a million tweaks I could try. I also don't exercise as much as I should, but I could easy get on my stationary bike for 30 minutes a day.

Looking forward to learning about all of the solutions that have worked for people here. Also wondering if this is even my diagnosis!

[stjohnh]

Hi CoachLisaB. I'm glad you found us, though sorry about your troubles. You almost certainly have RLS, your description fits well. The problem you had with the Claritin-D was more likely the claritin portion, which is an antihistamine. They are known to kick off RLS symptoms.

When you see your doctor, be aware that nearly all GPs will recommend you start with a dopamine agonist such as Requip, Mirapex, pramipexole, or similar. Unfortunately, these drugs work very well at the start, but have a common and fatal flaw. They, after somewhere between a few weeks and a few years, usually result in augmentation. Augmentaion is a serious problem in which RLS symptoms worsen in spite of higher doses of the drug. Better to start with a drug like gabapentin, which while not as good at controlling symptoms, doesn't have the augmentation problem. Even better, get IV Iron infusions if you qualify.

RLS is caused by BID (Brain Iron Deficiency). Many people with RLS can have their symptoms markedly reduced or even eliminated with IV Iron treatments. This is the only treatment that gets at the basis for RLS (low brain iron). It has almost no side effects. The International Restless Legs Syndrome Study Group has elevated IV Iron treatment to first line therapy. This means that IV Iron is one of the first treatments doctors should try, not one of the last (as has been done for many years). If you can get your doc to prescribe IV Iron treatment, that is the way you should go. Unfortunately this is fairly new information and most docs, even those that frequently treat RLS, are not aware of it. Note that the blood test doctors usually do to check for low iron (ferritin test) only checks for low BLOOD iron, there is no test available for checking for low BRAIN iron. Oral iron usually doesn't provide a high enough blood level increase to help, folks need IV Iron infusions. Here is a link to the recommendations:

https://reader.elsevier.com/reader/sd/p ... 0812205250

[Rustsmith]

CoachLisa, glad you found us but sorry that you needed to.

There are a couple of tricks that many of us use on nights like you had last night (other than walking the neighborhood for hours). The first one is to soak your legs in a tub of very hot water. The water needs to be as hot as you can stand. For some reason, this seems to calm the nerves long enough for you to get back into bed and fall asleep before the sensations return. Others find that cold water soaks work, but obviously these are not as pleasant. And if you don't have a tub, a hot shower directed onto your legs, neck or the back of the head can also work, but not as well as soaking.

The other trick is to use mental distraction. This can be done by playing suduko, doing a crossword or reading a very good book that pulls you into the plot so that you forget about your legs. Pretty soon, your legs are calm and you can go back to bed.

[stjohnh]

Corrected guidelines link:
https://www.sciencedirect.com/science/a ... via%3Dihub

[CoachLisaB]

Hi CoachLisaB. I'm glad you found us, though sorry about your troubles. You almost certainly have RLS, your description fits well. The problem you had with the Claritin-D was more likely the claritin portion, which is an antihistamine. They are known to kick off RLS symptoms.

When you see your doctor, be aware that nearly all GPs will recommend you start with a dopamine agonist such as Requip, Mirapex, pramipexole, or similar. Unfortunately, these drugs work very well at the start, but have a common and fatal flaw. They, after somewhere between a few weeks and a few years, usually result in augmentation.

Thank you! Yes, I'm seeing a lot here about augmentation. Good to watch out for it. My doctor actually rarely prescribes drugs on first account of a problem. Unfortunately or fortunately, she's all about lifestyle changes and will likely get on my case to exercise more (or *some*). But I do want to go in somewhat informed, so the iron information is really good to know and that's the kind of thing she'd probably be open to more than drugs.

[CoachLisaB]

CoachLisa, glad you found us but sorry that you needed to.

There are a couple of tricks that many of us use on nights like you had last night (other than walking the neighborhood for hours). The first one is to soak your legs in a tub of very hot water. The water needs to be as hot as you can stand. For some reason, this seems to calm the nerves long enough for you to get back into bed and fall asleep before the sensations return. Others find that cold water soaks work, but obviously these are not as pleasant. And if you don't have a tub, a hot shower directed onto your legs, neck or the back of the head can also work, but not as well as soaking.

The other trick is to use mental distraction. This can be done by playing suduko, doing a crossword or reading a very good book that pulls you into the plot so that you forget about your legs. Pretty soon, your legs are calm and you can go back to bed.

Thank you, Steve. I would be tempted to try ice first as I have lots of ice packs from breaking my leg and foot last year! And it seems less disruptive than having to get into a bath in the middle of the night. I'm curious: would a hot pad or heated blanket have the same effect as a hot bath? Do people try that as well?

As someone who has also suffered from panic attacks, I know all about distraction! I do have a word search book next to my bed, and that's probably a good option for when I'm anxious about not sleeping.

[CoachLisaB]

Corrected guidelines link:
https://www.sciencedirect.com/science/a ... via%3Dihub

[Rustsmith]

would a hot pad or heated blanket have ... hot bath?

A heating pad or blanket helps, but is not as effective. You don't get as much heat into (or out of) your legs as quickly and the heating effect is limited to the spots where the blanket or pad is in contact. With hot water, the water contacts 100% of the skin surface all the way around your legs.

However, an electric blanket does help some. I sleep with one on my legs year round.I sounds a bit crazy to have the air conditioner on and sleeping with an electric blanket, but that is what I do and the blanket helps just not enough when my RLS decides it want to show me who is boss.

[Yankiwi]

More distraction hints: When my legs were really bad, before finding my current cocktail, I worked on jigsaw puzzles. Standing, stretching and walking a little while finding the pieces helped and passed the time in the middle of the night.
Now my legs are not as painful but still wake me up several times every night. After reading for a while I listen to a few Judge Judy cases on my iPad while doing an on line jigsaw puzzle on my phone. Blue screen does not seem to affect me.