Looking back now my RLS first started in my mid-twenties, when very occasionally (usually after a heavy weekend) I would notice this peculiar discomfort in my calves. At the time I would dismiss it, take myself to bed and sleep it off.
It was around the age of 36 that, for no apparent reason, RLS kicked in hard. Suddenly, night after night, I found myself dragged from the point of blissful sleep by this maddening crawling sensation in my left calf. Of course I had no idea what to make of it and it must have been at least a year before the internet finally led me to self-diagnose.
Since then (now age 44) the RLS has become steadily worse to the point where I experience symptoms every night severe enough to keep me awake until 4am. I now find myself considering for the first time whether to approach my doctor for medication.
However the impression I get from the postings on this site is that there are very few people who have fundamentally improved the quality of their life by taking drugs. Is this true or just a false perception? Are the majority of people who start drugs ultimately satisfied with that decision or do they wish they had just 'lived' with it?
I know that every case is different etc, etc but it would really be helpful to know if there are people out there who feel that, on balance, going onto medication was the right decision.
in search of optimism...
Welcome Guzz
Welcome to you Guzz,
I'm happy to see that your already into the habit of making a difference here. A poll on your first post.........
LOVE IT.
I am a lifer RLSer, 40 years now. I was severe as a child, then again at the age of 30. I suffer with pain, can itch myself bloody, and in ten years found few things that offer lasting, total relief. I have tried many medicationsand doctors, before finding a doctor that has a working knowledge of RLS. For two years we tried handfuls of medications that either did not work or some that worked for a short time. Some medications made me worst or the side effects were not worth it. Leaving me with a body that was eating itself due to sleep deprivation, chronic pain, and general hopelessness. It took me almost 2 years of trial and error to find what helps me. It's not always an easy fix, it can be work to find what's right for you. Just this Aug. - Sept. I was able to discover a medication that did work for me.
What I now have, is a medication that is working to the point that I can handle the symptoms. They have not left me completely and I can still have out right attacks......an attack where walking like I'm a hundred year old woman is a good day.
Medications can be hard on your body. It may take time to find what will work for you. I think most of us here would prefer not to take medications, but the flipside of that is QUALITY OF LIFE. In search of QUALITY OF LIFE, I choose medications. I'm sleeping better, my body is healing, my mind is finding itself through the fog. I feel that I control the RLS now, not the reverse. Before my new medication, RLS controlled my life, my family's, my friends.........I was hopeless things would ever change. That I would even be around another five years. I use non-pharm things as well as medication and I'm so much better off now than I was for YEARS.
You are the only one that can say whether your ready for medication or not. I think your quality of life will speak louder than anything else. It's truely trial and error. We are all different, so what works for me, may not for you. Maybe I need one pill, where you might need a "cocktail". If non-pharm things work to help you maintain your Quality of life, go for it. If you feel it's time to supplement your body with medication, do that too.
I have decided to become my own Gatekeeper, not the doctor. I have and continue to educate myself about this disorder. I know better than anyone how my body feels and reacts to different things. I can be the driver of this vessel, as being a passenger was not working.
If you secide to seek help from a Doctor, arm yourself with an education about RLS. It's your best defense. Make sure you have a good working relationship with your doctor, you'll need it. Never assume because a doctor says they heard of RLS that they know how to treat it. Not trying to being mean here, just that you need to be prepared. Below is a link of the RLS Algorithm........a RLS handbook of diagnosis and treatments. Print one off for yourself and your doctor.
http://www.mayo.edu/proceedings/2004/jul/7907crc.pdf
So sorry you had to find us this way, but so darn glad your here now. I think your first post was bloody awesome.
I'm happy to see that your already into the habit of making a difference here. A poll on your first post.........
LOVE IT.
I am a lifer RLSer, 40 years now. I was severe as a child, then again at the age of 30. I suffer with pain, can itch myself bloody, and in ten years found few things that offer lasting, total relief. I have tried many medicationsand doctors, before finding a doctor that has a working knowledge of RLS. For two years we tried handfuls of medications that either did not work or some that worked for a short time. Some medications made me worst or the side effects were not worth it. Leaving me with a body that was eating itself due to sleep deprivation, chronic pain, and general hopelessness. It took me almost 2 years of trial and error to find what helps me. It's not always an easy fix, it can be work to find what's right for you. Just this Aug. - Sept. I was able to discover a medication that did work for me.
What I now have, is a medication that is working to the point that I can handle the symptoms. They have not left me completely and I can still have out right attacks......an attack where walking like I'm a hundred year old woman is a good day.
Medications can be hard on your body. It may take time to find what will work for you. I think most of us here would prefer not to take medications, but the flipside of that is QUALITY OF LIFE. In search of QUALITY OF LIFE, I choose medications. I'm sleeping better, my body is healing, my mind is finding itself through the fog. I feel that I control the RLS now, not the reverse. Before my new medication, RLS controlled my life, my family's, my friends.........I was hopeless things would ever change. That I would even be around another five years. I use non-pharm things as well as medication and I'm so much better off now than I was for YEARS.
You are the only one that can say whether your ready for medication or not. I think your quality of life will speak louder than anything else. It's truely trial and error. We are all different, so what works for me, may not for you. Maybe I need one pill, where you might need a "cocktail". If non-pharm things work to help you maintain your Quality of life, go for it. If you feel it's time to supplement your body with medication, do that too.
I have decided to become my own Gatekeeper, not the doctor. I have and continue to educate myself about this disorder. I know better than anyone how my body feels and reacts to different things. I can be the driver of this vessel, as being a passenger was not working.
If you secide to seek help from a Doctor, arm yourself with an education about RLS. It's your best defense. Make sure you have a good working relationship with your doctor, you'll need it. Never assume because a doctor says they heard of RLS that they know how to treat it. Not trying to being mean here, just that you need to be prepared. Below is a link of the RLS Algorithm........a RLS handbook of diagnosis and treatments. Print one off for yourself and your doctor.
http://www.mayo.edu/proceedings/2004/jul/7907crc.pdf
So sorry you had to find us this way, but so darn glad your here now. I think your first post was bloody awesome.
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ViewsAskew
- Moderator
- Posts: 16585
- Joined: Thu Oct 28, 2004 6:37 am
- Location: Los Angeles
A third option
How about adding an option, "It was both good and bad"? When I started meds, I was a zombie. Couldn't work. Slept 13 hours and was still exhausted (I was primarily a PLMDer). Meds gave me my life back. But the meds I took had side effects that caused other problems. A more knowledgeable doctor would have seen that more quickly and switched me to something else. Now I know more. The side effects are not permanent. They have reversed as I went off the meds. Still have to find a new med to work on the PLMs, but I wouldn't go back and trade in those 18 months where the meds worked, the side effects were manageable, and I was able to hike in the Sierra Nevadas, start a new business, and get my life back.
Welcome!
Ann
Welcome!
Ann
WELCOME GUZZ!
Hi, it's Jan
Welcome! I see you've already been welcomed by the wonderful Becat and Ann--two of our best members! I'll just add my two cent's worth on your question. BTW, I'm impressed with your poll already!!! You're going to be an asset, I'm sure.
I have been on meds for about 15 years (have had RLS for approx. 20). I know a lot of people choose different methods to help fight RLS. However, with me it was quality of life. To make a long story short, I have been so bad that I couldn't even sit in a chair at my home for more than 5-10 min. without needing to get up and walk around. I went for YEARS with very little sleep--and what sleep I did get was not restorative. So, to function at all, I had to take medication.
Whether or not to take medication is such an individual choice. I admire people who seem to be able to handle it without medicinal help, but I was not one of them.
Again, welcome to our family! We're glad you're here.
Jan
Welcome! I see you've already been welcomed by the wonderful Becat and Ann--two of our best members! I'll just add my two cent's worth on your question. BTW, I'm impressed with your poll already!!! You're going to be an asset, I'm sure.
I have been on meds for about 15 years (have had RLS for approx. 20). I know a lot of people choose different methods to help fight RLS. However, with me it was quality of life. To make a long story short, I have been so bad that I couldn't even sit in a chair at my home for more than 5-10 min. without needing to get up and walk around. I went for YEARS with very little sleep--and what sleep I did get was not restorative. So, to function at all, I had to take medication.
Whether or not to take medication is such an individual choice. I admire people who seem to be able to handle it without medicinal help, but I was not one of them.
Again, welcome to our family! We're glad you're here.
Jan
No one is alone who had friends.
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Rubyslipper
- Posts: 992
- Joined: Wed Mar 24, 2004 2:53 am
- Location: Missouri
I was able to function for many years without meds. I had a few bad nights every couple of months, and it was hard to function the next day. Five years ago it became bad enough that I needed help. Three years ago I realized that what I was taking was quite probably making it worse. So I went the rounds of several doctors. It wasn't until two years ago that I got the right ones for me and I take them faithfully. Quality of life means so much. There are still things I do to help out on the bad nights when the meds aren't working. Hot tea, hot baths, just giving up and walking for awhile. The meds usually don't work when I mess up; I take them way too late, drink alcohol (although that doesn't bother me much), have caffeine or a really stressful day. Lately I think I need to discuss with my doctor either an increase on the meds or to try something different. Anyway, I'm glad you posted the poll. One thing we need to remember, it's different for all of us. What works for one, may not for another. But we share ideas and try to help out anyway we can.