LightChucker
Enlightened
Many doctors have never even heard of - let alone know how to treat - "Restless Legs Syndrome" (RLS) and "Periodic Limb Movement Disorder" (PLMD).
Of all the medical problems I struggle with, these two scare me the most.
Categorically, these are "movement disorders". They can make life a living hell for those who are afflicted. Also suffering, are the people who live with and sleep with those who are afflicted. After all, if your bed-partner is kicking, jerking, or moving it is unlikely that you will be able to get to sleep until their attack has abated. Statistically, one tenth (10%) of the members of CPF suffer from one or both of these conditions.
RLS:
The victim is attacked with an overwhelming, excruciating compulsion to move. This affects large muscle groups such as thighs, calves, shoulders, etc. The muscles do not jerk, but they literally DEMAND to be moved! It is usually described as feeling like worms are crawling in the muscles. The only way to relieve this feeling is to move. So horrible is this feeling that sitting in a car or plane or theater can be "unthinkable". Going to sleep – or staying asleep – can be impossible. Some people must walk continuously without ever sleeping.
PLMD:
This movement disorder is different from RLS in that you do not have any urge to move. Instead, the muscle suddenly jerks – sometimes violently enough to throw the person to the ground. Almost everyone has had the experience where their stomach muscles suddenly jerk just as they were about to fall asleep. Well, PLMD is like that – only much worse.
I experienced my first RLS attack at about surgery #7 for the detached retina of my left eye. I didn't even know there was a name for it. Then, I was reading an article in a "Sleep Apnea" group when someone described the symptoms I was having and called it Restless Legs Syndrome. That was fortunate for me, because I discovered that I was not alone and that there were doctors out there that could treat it.
Thanks to the internet, you can quickly educate yourself on both the symptoms and the treatments available. The problem is that most doctors know nothing about these diseases or how to treat them. So, you find yourself in the position where you know more than your doctor. That is both good and bad. (We all know about doctors and their fragile egos.) RLS and PLMD are different for each patient – what works for you may not work for me. In fact, some treatments will actually make them worse – known as "augmentation". For example, Levadopa is known to cause augmentation in 80% of patients. I literally fired my first doctor simply because he prescribed that stuff for my RLS. That is an example of where I knew more than the doctor. I was fortunate to have caught this before the augmentation had set in. I immediately started looking for a different doctor. I went through 5 doctors before I found the one I am using now.
Here is one of many surprises I had. Have you ever heard of "ferritin"? It is one of the ways they measure your body's iron level. I have never had a doctor ask for the test to be performed. I had to ask the doctor to have the test performed. My first test returned 35. My doctor said that was normal. He was WRONG! He did not know that for RLS patients, 50 is the minimum. I have read where many people have fixed their RLS by simply raising their ferritin count.
Of all the medical problems I have, RLS and PLMD scare me the most. At this moment, my symptoms are in remission, but it scares me to think about how bad they could become. If I had them as bad as some people I have read about, I would not trust myself in a room with a loaded gun.
I am still looking for other solutions and remedies. Sooo, do you have symptoms of RLS or PLMD? Then, please share what works for you here.
Chuck
Of all the medical problems I struggle with, these two scare me the most.
Categorically, these are "movement disorders". They can make life a living hell for those who are afflicted. Also suffering, are the people who live with and sleep with those who are afflicted. After all, if your bed-partner is kicking, jerking, or moving it is unlikely that you will be able to get to sleep until their attack has abated. Statistically, one tenth (10%) of the members of CPF suffer from one or both of these conditions.
RLS:
The victim is attacked with an overwhelming, excruciating compulsion to move. This affects large muscle groups such as thighs, calves, shoulders, etc. The muscles do not jerk, but they literally DEMAND to be moved! It is usually described as feeling like worms are crawling in the muscles. The only way to relieve this feeling is to move. So horrible is this feeling that sitting in a car or plane or theater can be "unthinkable". Going to sleep – or staying asleep – can be impossible. Some people must walk continuously without ever sleeping.
PLMD:
This movement disorder is different from RLS in that you do not have any urge to move. Instead, the muscle suddenly jerks – sometimes violently enough to throw the person to the ground. Almost everyone has had the experience where their stomach muscles suddenly jerk just as they were about to fall asleep. Well, PLMD is like that – only much worse.
I experienced my first RLS attack at about surgery #7 for the detached retina of my left eye. I didn't even know there was a name for it. Then, I was reading an article in a "Sleep Apnea" group when someone described the symptoms I was having and called it Restless Legs Syndrome. That was fortunate for me, because I discovered that I was not alone and that there were doctors out there that could treat it.
Thanks to the internet, you can quickly educate yourself on both the symptoms and the treatments available. The problem is that most doctors know nothing about these diseases or how to treat them. So, you find yourself in the position where you know more than your doctor. That is both good and bad. (We all know about doctors and their fragile egos.) RLS and PLMD are different for each patient – what works for you may not work for me. In fact, some treatments will actually make them worse – known as "augmentation". For example, Levadopa is known to cause augmentation in 80% of patients. I literally fired my first doctor simply because he prescribed that stuff for my RLS. That is an example of where I knew more than the doctor. I was fortunate to have caught this before the augmentation had set in. I immediately started looking for a different doctor. I went through 5 doctors before I found the one I am using now.
Here is one of many surprises I had. Have you ever heard of "ferritin"? It is one of the ways they measure your body's iron level. I have never had a doctor ask for the test to be performed. I had to ask the doctor to have the test performed. My first test returned 35. My doctor said that was normal. He was WRONG! He did not know that for RLS patients, 50 is the minimum. I have read where many people have fixed their RLS by simply raising their ferritin count.
Of all the medical problems I have, RLS and PLMD scare me the most. At this moment, my symptoms are in remission, but it scares me to think about how bad they could become. If I had them as bad as some people I have read about, I would not trust myself in a room with a loaded gun.
I am still looking for other solutions and remedies. Sooo, do you have symptoms of RLS or PLMD? Then, please share what works for you here.
Chuck
