Would a Restless Leg Support Group help you????

Created by Simple Minds on Jun 8, 2009

14 votes

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Since: Feb 09

Suffolk, VA

#1 Jun 8, 2009
If you currently suffer with Restless Syndrome please let me know. I'm looking into starting a RLS support group in Suffolk but I'm not real sure how many actually know that they are suffering from RLS. I'm currently a member of the RLS Foundation and they are willing to help me get this group off the ground. In the mean time I'm looking for other people like myself who suffer from this condition. Check your answer in this poll and let me know your thoughts on this subject. Alot of people are suffering from this condition and either don't realize that this is what they have or they have not found a DR. who can treat them properly. I have some answers and some help for you.
Jan

Suffolk, VA

#2 Jun 11, 2009
I have been diagnosed with RLS since the late 80's. Sleep studies indicate movement of the legs at around 190/hour. The sensations moved into my forearms about five years ago and I have heard talk about changing the name from Restless Leg Syndrome to Restless Limb Syndrome. I also suffer from Periodic Leg Movement. The difference is in the neurological cycle (every 30 seconds versus every 6-10 seconds for RLS and more sudden, powerful jerks versus the less powerful moving of thelegs with RLS). I have been treated with Mirapex, fairly successfully) for a number of years now.

Since: Feb 09

Suffolk, VA

#3 Jun 11, 2009
Jan wrote:
I have been diagnosed with RLS since the late 80's. Sleep studies indicate movement of the legs at around 190/hour. The sensations moved into my forearms about five years ago and I have heard talk about changing the name from Restless Leg Syndrome to Restless Limb Syndrome. I also suffer from Periodic Leg Movement. The difference is in the neurological cycle (every 30 seconds versus every 6-10 seconds for RLS and more sudden, powerful jerks versus the less powerful moving of thelegs with RLS). I have been treated with Mirapex, fairly successfully) for a number of years now.
Wow sound as if you have it as bad as I do. I was diagnosed with it about 4 years ago. Started out once or twice a month for me then moved to a few times a week to every night. Mine also goes into my arms when it gets out of control in my legs. I have tried every medication out there for RLS and none of it has worked for me. We came to the conclusion that I was the kind of make up that would only respond to pain killers. My dr. put me on Hydrocodine 750mg one at bed time which worked great until by body built up a tolerance. Then he put me on Ativan to help when it stopped working in the middle of the night. After two years of my dr. increasing the hydrocodine to two tabs a night along with taking the ativan I ended up with a dependency to these two medications and started to feel bad during the day. At that point he sent me to an addiction specialist who placed me on a medication (not methadone) that helped me combat the dependency that I had to these medications. During that time we found that I had no signs of RLS at anytime not at night and not during the day. We have now been able to get this medication approved through my INS. company for me to continue taking it for the RLS. It has been a life saver for me. I'm not currently working with a few MD's from the Mayo Clinic to get clinical trials of this med and other RLSers so that it can be an approved medication for us to take in extream cases like mine. At one point my dr. was going to put me on methadone! I passed on that. Alot of RLSers take Methadone for this condition that have very complex cases. I'm now working with the RLS Foundation to start up a support group here in Suffolk. There are alot of Neuro Drs. in our area who do not know what they are doing regarding this condition. I would like to form a group of us that can go up against these MDs to get the proper education to them and educate them on our condition and what meds are being taken for it that actually do help when all else fails.
Have you ever visited the Foundation website? There is a wealth of information on it. The discussion board is a wonderful tool to use. Its somewhat like this board but only people with RLS are on there. There are many topics that are useful to us and you get a birds eye view from someone who has RLS. www.rls.org . Check it out if you have not already.
Its wonderful that your medication works for you. keep in mind that normally over time it will get worse and for some people their meds stop working. You will gain much education from this website.
Even though you take Mirapex do you still have issues with the RLS?
Mia

Belton, SC

#4 Jan 22, 2011
I take ultram for my RLS now and it's great. Have you started a group yet?
Simple Minds

Suffolk, VA

#5 Jan 25, 2011
Mia wrote:
I take ultram for my RLS now and it's great. Have you started a group yet?
I'm working on it. It's not as easy as I had thought to get one up and running.

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