Restless Legs Syndrome (RLS) Discussion Board

Night #2 on 600mg gabapentin.
Symptoms are a little worse than yesterday night, perhaps because of the extremely stressful day I had. I was unable to eat today as well, which may have an impact on symptoms. Lost 10 lbs so far since things got bad.
Awake and twitching tonite with awful sensations.

Having some trouble focusing my eyes tonight. Not sure if it is exhaustion or gabapentin side effects.

My husband is losing patience with me. He says I am blowing things way out of proportion. This sure is an isolating disease.

So sorry to hear of husband's response. It doesn't help at home, but know that we understand. With your husband, you might have success if you ask him to think about how he'd do if something that really bothered him - tickling, itching, hiccups, a certain kind of music or anything that drives him crazy - happened to him every time he relaxed, sat down, or tried to sleep and he could NOT get it to stop. I hope he eventually gets it.

Side effects, initially, can be very problematic. If you can hang in there (and I know time is not on your side), chances are good it will get better.

Jen wrote:Ooh that sounds promising! I will try to find an acupuncturist right away.
On Monday if I have not gotten help yet I will try another hospital system.

When nothing else is working, it's worth trying anything. Acupuncture made mine worse. My point in saying this isn't to deflate you (though it likely did), but to moderate your reactions. The hardest thing for many of us is the highs of new hope and the lows of failed options. I found that if I didn't temper both of them that I was an emotional wreck.

There are so many things that work for a minority of us - but you read about them (and I've tried likely 50 or more of them) and you can't help but be both envious and hopeful that you, too, will find that relief.

One of our members gets regular relief with a TENS unit. If you have one, try it - I bought a machine for $30 on ebay. It didn't help my RLS/WED, but I use it for trigger points, so I'm happy.

Diet helps a small percentage of our members. Gluten free, sugar free, dairy free. Many theories as to why.

Reducing inflammation helps some people.

Wraps, stockings, things that are tight on the legs - works for a larger minority that most things, I think based on responses.

Vitamin D - if you are low, try it. It's implicated.

Magnesium, vitamin B family, vitamin e - in the past, many people suggested these work. It seems most likely that they work only when you are low in them in the first place, but they aren't that expensive.

Marijuana has a good chance of helping, but getting the right strain is important, and that can be difficult to do. if you are not in a MM state, this is also fraught with other issues.

The good news about all these options is that they keep you busy trying - and that can keep you happier than when you have nothing to try!

Thank you so much.

Btw I had the "hiccups" conversation with my spouse and it really helped!

A number of us control our symptoms with kratom, which is an o opioid-like herb. You can search for the word on this site, and see all of the info about it. Good luck to you. I'm sorry you're having such a horrible time. The good thing about kratom is that it is legal in most places, and you don't need a prescription for it. You can order it from the internet.

I SLEPT LAST NIGHT!
Third night at 600mg gabapentin.
My husband said I was thrashing all night but the discomfort must have been absent or low enough to allow me to remain asleep.
Super dizzy this morning.

Hoping it wasn't just a passing out incident from lack of sleep and instead the first of many genuine restful sleeps.
Still waiting for my 2016 appointment with the sleep lab. Definitely going to follow up despite what appears like enough relief to function.

Interesting about kratom. Many years ago I bought a bottle of concentrate and tried a few different dosage levels recreationally. Made me a little nauseous at higher doses but I wouldn't hesitate to try it again if I need to for this.
Glad people who need it can still get it!

People who seem to know a lot about kratom advise against using the concentrates. Using the powdered leaf form is reportedly safer.. And you probably do need to buy it off the internet. There are a number of sites that sell good quality kratom. You could search reddit for suggestions. I get mine from Velvet Soul. To find it on that site you need to search for "red leaf" in the search box, and the different varieties will come up. I prefer Red Leaf Borneo. It seems to have the best pain-relieving and sedating properties.

Thanks for the tip!

Oh, one other thing. You probably got nauseous because you took too much. Start small--a gram (about 1/2 tsp)--and then go up slowly if you need to. People on reddit talk about using much bigger doses but they are using kratom to get high, not for pain relief. Using an unnecessarily high dose just raises your tolerance much faster and doesn't help much with pain (or RLS) relief.

Jen wrote:Thank you so much.

Btw I had the "hiccups" conversation with my spouse and it really helped!

Jen wrote:I SLEPT LAST NIGHT!

I am so happy to be alive!
When I joined this forum I figured I had about two weeks left to live before I either died from exhaustion or chose to end my own life due to the agonizing sensations that tormented me for 9-10 hours every single night.
I couldn't get any doctor to take me seriously.
You guys gave me the will to carry on, and let me know that help was out there.
Thank you
Thank you
Thank you

Of course I write this while I sit in the evening and my legs are jerking all over the place. But the sensations are bearable on the gabapentin for now and I have hope that there are many options to try.

Indeed .