Restless leg syndrome (RLS) is a neurological condition that causes someone to have an irresistible urge to move their legs (In some cases their arms as well). Despite the fact that some people, including doctors, do not acknowledge it as a real condition, it is.
In my family we have what is called Primary RLS. Basically that means the people in my family have RLS that is not caused by an injury or a medication. The people in my family that we know for sure have it or had it are my great-grandmother, my grandfather, my mother, my brother, possibly my son, myself, and my daughter has started exhibiting some symptoms.
Some symptoms of RLS are:
- A strong urge (for me it is a horrible and irresistible urge) to move your legs (for some people it can include their arms). The need to move your legs is often accompanied by extremely uncomfortable sensations, like feeling as if there are bugs crawling around in your legs, feeling as if you are being stuck with pins and needles (much different than having your foot fall asleep feeling), pulling, tugging or and/or gnawing.
- The symptoms are usually worse at night or when you are resting. Some people find that they have symptoms when they are required to sit for long periods, like in a car. Symptoms are usually worse the more sleepy you are.
- Your RLS symptoms get better with movement. Either they go away for a short period of time or they are reduced. The relief usually begins shortly after your legs (or arms) become active, and will usually last the duration of the activity.
RLS can make it so you have an extremely difficult time falling asleep and/or staying asleep. Lack of sleep is one of the chief complaints by people with this disorder. The lack of sleep caused by this disorder can have a huge negative impact on your physical and mental health.
When my RLS symptoms are out of control, it really affects my mental health, as well as my sleep and how I feel physically. Just the symptoms alone are enough to affect my mental health because they feel so bad. In fact, the final thing that pushed me into the act of suicide was the thought that since my husband and I had lost our health insurance I would not be able to obtain the medication I need to keep my symptoms controlled.
To me, the misunderstanding about how badly RLS can affect someone can be equated to the misunderstanding about people with mental health issues. It is a horrible disorder than eats away at your life. For me and my family, it is nothing like it is portrayed in the TV commercials where it is only slightly annoying. My mother has probably not had a good night’s sleep in years because her symptoms are so bad. Her medications for it do not alleviate all of her symptoms. I am caught in a catch 22 type of situation. The medications I need to treat my depression make the symptoms worse, which means I have had to increase my dose of RLS medication twice in the last year. My brother sometimes gets symptoms in his arms as well as his usual ones in his legs.
People who have Primary RLS cannot look forward to a time when their symptoms might go away, like people whose RLS is solely caused by a medication or injury can. Instead, our symptoms almost always get worse as we get older. Because so few doctors really understand how insidious this illness can be, they are often at a loss on how to treat us. Often for us to get any relief from our symptoms, we have to take a higher dose of the RLS medications than is normally given out, and this tends to make most doctors a little wary about prescribing those higher doses.
I hate RLS with a passion. I hate how it makes my arms and legs feel. I hate how it takes away my sleep. I hate how I see it affecting my mother. I hate the fact that my children most likely have it. I hate how it turns the simple act of taking a nap into a huge deal. I hate that it often keeps me and my husband from sleeping in the same bed.
an ex of mine complained of these symptoms and i went through them with him long before they had come up with a name and anagram for this. if i understand it correctly, it may be related to parkinson's disease in some way because the same drugs used on parkinson's patients are used on RLS patients. my father was misdiagnosed with parkinson's (FIRST in 50 wrong DX's) and was terribly affected by the medication he received.
however, my ex, probably would have been so well for having taken it. i've experienced what they talk about in the commercials. last night, because i've had two bad falls in as many weeks, i kept having the "falling-wake up-catch yourself" dream. i mean about 10 times. the only thing that could lull me back into tortured sleep was shaking a foot off the side of the bed. sometimes my legs bother me for no reason. sometimes i seem to have absolutely no blood circulation to my hands or feet and wake over and over again to sleeping limbs.
i have no doubt that the symptoms you describe are real and i have seen a person go through them in tremendous pain sometimes and annoying discomfort at others.
i can't imagine the pharmacological stuff involved with treating depression, anxiety and RLS. it seems like you're doing really well… other than the staph. i mean really, overall.
My recent post crash landing
Life with RLS is a cycle of explaning to everyone why you cannot sit and eat a meal, sit,sleep or even travel and as far as going to bed like a normal person ..forget it.I have been on a long list of drugs.I had the first symtoms at 9 years old and it is in every part,very extreme!.About a year ago I discovered this;Lye on your stomach,rest your elbows on the bed and your chin on your hands.Pull forward and backward.It seems to pull the spine apart.Immediately there is releif.God Bless and a bit of quietness in the body and mind~
an ex of mine complained of these symptoms and i went through them with him long before they had come up with a name and anagram for this. if i understand it correctly, it may be related to parkinson's disease in some way because the same drugs used on parkinson's patients are used on RLS patients. my father was misdiagnosed with parkinson's (FIRST in 50 wrong DX's) and was terribly affected by the medication he received.
however, my ex, probably would have been so well for having taken it. i've experienced what they talk about in the commercials. last night, because i've had two bad falls in as many weeks, i kept having the "falling-wake up-catch yourself" dream. i mean about 10 times. the only thing that could lull me back into tortured sleep was shaking a foot off the side of the bed. sometimes my legs bother me for no reason. sometimes i seem to have absolutely no blood circulation to my hands or feet and wake over and over again to sleeping limbs.
i have no doubt that the symptoms you describe are real and i have seen a person go through them in tremendous pain sometimes and annoying discomfort at others.
i can't imagine the pharmacological stuff involved with treating depression, anxiety and RLS. it seems like you're doing really well… other than the staph. i mean really, overall.
My recent post crash landing
As of now, the experts do not think that parkinson's disease and RLS are related, who knows what they may say in a few years. It is a dopamine issue (I believe parkinson's is as well). Basically, the dopamine in someone who has primary RLS does not come out in the proper amounts and it causes these symptoms, like the nerves in your body cannot quiet down when it is time for you to rest of sleep. The same drugs do work, I currently take mirapex for my RLS. My mother's is so bad that in addition to mirapex she is also having to take methadone to even get the tiniest bit of relief from her symptoms, however, her symptoms never completely go away.
The RLS is part of the reason it took so many months to find the proper medication mix for me. When I took Geodon, I was on it less than a week before I had to quit taking it because it caused my symptoms to be so bad. The diabetes does not help either, many anti-depressants raise blood sugar. The steroids I have to take for my breathing sometimes can actually cause depression or make it worse. It is all a delicate balance.
I feel like over all I am doing well. Even when I have had to be hospitalized for my asthma, mentally I have been able to handle it better than I would have in the past.
As of now, the experts do not think that parkinson's disease and RLS are related, who knows what they may say in a few years. It is a dopamine issue (I believe parkinson's is as well). Basically, the dopamine in someone who has primary RLS does not come out in the proper amounts and it causes these symptoms, like the nerves in your body cannot quiet down when it is time for you to rest of sleep. The same drugs do work, I currently take mirapex for my RLS. My mother's is so bad that in addition to mirapex she is also having to take methadone to even get the tiniest bit of relief from her symptoms, however, her symptoms never completely go away.
The RLS is part of the reason it took so many months to find the proper medication mix for me. When I took Geodon, I was on it less than a week before I had to quit taking it because it caused my symptoms to be so bad. The diabetes does not help either, many anti-depressants raise blood sugar. The steroids I have to take for my breathing sometimes can actually cause depression or make it worse. It is all a delicate balance.
I feel like over all I am doing well. Even when I have had to be hospitalized for my asthma, mentally I have been able to handle it better than I would have in the past.
When I first asked my doctor about getting treatment for my RLS, she told me that you can not get it in your arms. We then looked on the internet and sure enough, in extreme cases you can also get it in your arms. I have taked Clonazepam for yrs with good control of symptoms. Now doctors are always saying, it’s dangerous to be on benzos and also be in recovering for drugs and alcohol. So far I have taken Requip and Mirapex without any success. I was put on Geodon for bipolar 2 and it help me get a good night sleep for the first time in 30 yrs, if I can get past the RLS symptoms before falling asleep. My mood is also stable. It is very frustrating when doctors look at you like RLS is a walk in the park, when related to Bipolar or relapsing on alcohol or drugs. I suffer from Bipolar 2, Addictive Personality, Impulsivity and RLS. I wouldn/t wish anyone of these conditions on my worse enemy. I’m happy to have found this website. You make me feel like I’m not alone. Please publish this.
Does anyone out there have another answer to RLS besides the ones I have already tried? Medication that works for me is Clonazepam but because it is similar to alcohol and the risk for relaping on alcohol is greater, it is not advised I stay on it. Plus Clonazepam can also be addicting in itself. This is a drug we are trying to get me off of. The stary part is I’m not even off the Clonazepam comp;etely and I am also on Mirape,x but I am still having major RLS symptoms. I have tried Requip, Magnesium and all the home remedy suggestions. Please help!!!!!!!!!!!!!!!!
Above typos to March 1, 2011 6:24 pm entry,
1. I have taken Clonazepam
2. Geodon has helped me get a good nights sleep
Sorry