Restless Leg Syndrome

Thanks for sharing your experiences with restless legs. I know that while it is good to have a firm diagnosis about your condition (at least it was for me), it is also disconcerting to not be able to sit still or fall asleep. In fact, in my case, my symptoms have progressed & worsened over the years & it interferes with my life significantly. I have struggled with mine for about the last 30 years; but, I hasten to add that at first the symptoms were minor and only occurred when I was tired and in a place where I couldn’t go to sleep (like a meeting, concert, had company, etc.). So, while uncomfortable, they did not occur daily. My restless legs manifest a bit different than yours, in that as they have worsened over time, right now the feeling is akin to being shot full of adrenaline and/or almost as if I’ve been electrified from my inner core all the way outward to my outer limbs. So, my whole body Is then unable to sit or lay still...I was unable to sit in a car for longer
than 5-10 min., be in a meeting, etc. Presently, without medication, I’m unable to sleep at night, and am only able to falll asleep at about 5:00 am for an hour or two & rest of night I am walking, walking & even jogging or running since the symptoms are so severe, I try any & everything to get some relief.
I know this all sounds so dire, but it hasn’t been just suffering all those years. What I’ve found is that different medications work for a while, and they do alleviate the symptoms. The two medications that were most successful for me in the past are: Gabapentin & Requip. I’ve also tried extra magnesium, B vitamins, some sleeping medications, & like you Klonopin,but also Ativan, & Compazine. Requip worked for nine years, but then I started needing to increase the dosage. At first it was every three months but over the course of a year it became every two weeks. Each time I increased I had pretty negative side effects, which were severe headaches, nausea, vomiting,dizziness, and sometimes fainting. Once those symptoms started to decrease a bit, so did the effectiveness of the drug. So it became a vicious cycle of increasing dosage and feeling horrible the next day. Then, I sought advice from Mayo Sleep Center. They gave me lots of helpful information including the low iron connection with the restless legs. I too am now taking iron to alleviate that, however, even when my iron is higher and in the range it should be, I still have restless legs. I also learned that the medication I was taking (Celebrex)for depression aggravate my restless legs, so at my Sleep Center doctor’s recommendation, I switched to Wellbutrin, which is reported to be the only one that seems to not do that. I also take a small amount of Klonopin in the morning, .25 mg ( I cut a .5 mg tablet in half since .25 is not a dosage that it normally comes in. ). I also have fibromyalgia, and also saw the doctors at Mayo in that department also. I learned that for me, I am sensitive to many medications, and that tends to be somewhat the norm for people with Fibro. Many medications such as the anti-anxiety ones I listed, sleeping & pain meds, and even some antibiotics will make my restless legs much, much worse. The worst one I have ever taken is Trazodone, and after taking one pill, I was up for literally two days straight. I’ve also found when I list those drugs as ones that I’m sensitive to on forms from medical facilities (in the space for allergies & sensitivities), not all doctors, nurses or hospitals take it seriously. I’ve run into this when I’ve had surgeries. So, I’ve needed to be firm about what I can & cannot take. Initially, at Mayo, they gave me Gabapentin, which worked for a while, but not to the extent that it completely eliminated my symptoms at night. So the dosage was increased over a period of 3 to 6 months. At one point I was taking 1800 mg, but it affected my memory and my thinking was so fuzzy that we stopped that. I would sometimes even forget what people have told me in the middle of conversations with them.
Currently, since the restless legs can begin for me as early as three or 4:00 PM, I take one 400 milligram tablet of gabapentin at 4:00 pm & that keeps them from starting the jitteriness. I’ve also just started taking a new medication called Neupro which is a transdermal patch. I’ve been taking it for about 2 1/2 months now and I’m able to sleep 4 to 6 hours per night, which is wonderful. I also take 1-2 Gabapentin @100 mg each if I waken in night. This is the most I’ve slept in five years.
I also have learned I need to stop using any caffeine or any alcohol after 3:00 pm....if I have any at all, it doesn’t necessarily start restlessness right away, but by 6:00 or 7:00, it becomes pretty severe & lasts through the night.
This narrative got really long, but I wanted to share some symptoms with you in the event that yours worsen or you have similar ones. As you know, not everyone has the same reactions & symptoms, so perhaps yours won’t be the same as mine...but maybe some of same meds will work. I also wanted to make sure to convey a sense of hope that there is a medication that can work for you, but sometimes it takes trying different things to find it. Also, when I sleep more hours nightly, I feel like a different woman the next day. Not having enough sleep affects both physical and emotional well-being. So, If you don’t get enough sleep and feel unable to cope with life very well the next day, or your body aches & you have no energy, there is a reason for that.
Lastly, I believe that my restless legs were inherited, since my father had symptoms also. However, he died at the age of 60 years old. That was in 1979, and at that time, no one had recognized restless legs as a “real condition.” I remember him pacing the floor at night, especially during harvest season when he was driving tractor and a combine until late at night. So, I think his symptoms worsened when he was overtired also. I also think, although that’s been so long ago, and she didn’t talk about it much, that my paternal grandmother also had restless legs. She didn’t call them restless legs, but she talked about walking the floor and not being able to sleep at night.
I think this is a good forum to share our symptoms, but also a sense of hope with what has worked and Not worked for each of us. I know that for me, many people (including the first neurologist I saw in the 1990s) who have sleep apnea or insomnia have tried to compare their symptoms to mine as being are similar. And, they think believe if I used s CPAP machine, I’d do better. However their leg movements while sleeping at night are not the same. I’ve had a total of four hours sleep studies over the past 10 to 15 years and none of them have indicated that my oxygen levels dropped like those with sleep apnea. So, sometimes people will sympathize with you and offer what has worked for them as the cure all for you also, but it isn’t always the case. While I appreciate their concern, I also am sometimes frustrated by their belief that this is the answer for me also. Restless legs are so much more complicated than that easy answer.
I hope this helps....If any of my story, long as it is, raises questions about your situation and how you’re feeling I’ll be glad to post anything that might help you. Good luck.

@suecreader Sorry about all your conditions you have to do what works for you I found things that work for me but that doesn't mean it will work for everyone I apologize if you took it the wrong way

Oh no, I was not at all objecting to anything you have posted or said. . . . in fact, what you've shared has been helpful to me. Instead, if I've said something in the above post that sounded like I differed from you, that is not at all what I meant to impart. It seems my issues with restless legs and then fibro have gone on so long that I can get lost in the telling, and perhaps I inadvertently shared some past experience or present opinion that seemed at odds with yours. I did not intend that at all. I think shared wisdom is wonderful - that is why having this forum to bounce ideas off each other and share hope and experiences is so great. I notice that you've done that with many other people besides me. I do recall you saying you enjoyed helping other people, and believe me you are.

I was tested for restless leg syndrome. My dr asked if I was taking antihistamines ( which I took on and off). For me-every time I took BENADRYL my legs would get 'restless' and my muscles would tighten and cramp up. By not taking it I was fine. Odd huh!! Lynn

Interesting Lynn! This happens to me too when I take Benadryl.....many people don’t believe that it isn’t helpful for me since it makes them drowsy. I think it might go back to the fact that we are all so different, and some of us are sensitive to certain drugs and others are not. This is what makes dealing with RLS so confusing and complex, at least for me.

I have had severe restless leg syndrome for 30 plus years. I’m taking Parkinson’s pills and gabapentin for nerve pain. Neither drug is working any more I’m at the point that I hate going to bed, it also is severe when I sit or lay on couch. Has any one tried stem cell therapy for treatment? Thanks for replies

There has got to be a nerve (that is worthless) they can snip and make RLS go away. I fight this everyday and getting aggravated as over the years it just keeps getting worse, like the neurologist stated. I am contemplating a pain stimulator, as I have other aches too. I really doubt it works. I am also checking into Mayo’s RLS study. Desperately wanting help!

@suecreader @lynnkay1956 Benedryl and drugs containing that chemical such as the PM drugs absolutely get my legs kicking and feet flapping. I understand this is Periodic Involuntary Limb Movement (PILM) which is connected to RLS but it is definitely different and very weird.

Thanks for that information & validation degarden-girl. I’ve read about periodic involuntary limb movement, And I always forget to ask my doctor if I also have that in addition to restless legs or if it is indeed PILM. Thanks for the reminder.