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-   -   30+ years of RLS (http://www.healthboards.com/boards/restless-leg-syndrome/932776-30-years-rls.html)

ddill 12-23-2012 04:15 PM

30+ years of RLS
 
I first noticed a problem with m y legs in my 20's and it has gotten progressively worse. I tried several different meds and finally found that mirapex works for me. My RLS is now progressing to other body parts (mostly arms). Does anyone else have RLS in body parts other than legs?

junebugzz 12-26-2012 07:49 AM

Re: 30+ years of RLS
 
[QUOTE=ddill;5108159]I first noticed a problem with m y legs in my 20's and it has gotten progressively worse. I tried several different meds and finally found that mirapex works for me. My RLS is now progressing to other body parts (mostly arms). Does anyone else have RLS in body parts other than legs?[/QUOTE]

YES! I've had RLS as many yrs as you have,I'm 58 in Jan. It has taken over my body. Its the worse kind of Torture, everywhere on your body enveloped in the most almost unexplainable agony. How do you define RLS? Its so hard to explain to someone. I also am on Mirapex. At first I took it at bedtime now the dr. has me takeing three aday, the last one at bedtime. It had become a Constant day and night torture for me that did take over all my body, Not just my legs like the disease is said to be..Restless LEG Syndrome. NO, it can Everywhere on your body. The only relief i use to get was MOVE...if you for one second stop, RLS> i will try to explain the feelings throughout my body..of course the feeling that you can not sit still,,,duh..jerking all over from something inside of me crawling,twisting, hitting all my nerves and sending my teeth to grinding, my mind thinking i can't go on with this feeling inside, I thank God for Mirapex and my life back. Taking three a day has literally Changed my life and ability to get more sleep. I also have Fibromyalgia lupus and the list goes on..w/b Donna:angel:

junebugzz 12-26-2012 07:51 AM

Re: 30+ years of RLS
 
[QUOTE=junebugzz;5108956]YES! I've had RLS as many yrs as you have,I'm 58 in Jan. It has taken over my body. Its the worse kind of Torture, everywhere on your body enveloped in the most almost unexplainable agony. How do you define RLS? Its so hard to explain to someone. I also am on Mirapex. At first I took it at bedtime now the dr. has me takeing three aday, the last one at bedtime. It had become a Constant day and night torture for me that did take over all my body, Not just my legs like the disease is said to be..Restless LEG Syndrome. NO, it can Everywhere on your body. The only relief i use to get was MOVE...if you for one second stop, RLS> i will try to explain the feelings throughout my body..of course the feeling that you can not sit still,,,duh..jerking all over from something inside of me crawling,twisting, hitting all my nerves and sending my teeth to grinding, my mind thinking i can't go on with this feeling inside, I thank God for Mirapex and my life back. Taking three a day has literally Changed my life and ability to get more sleep. I also have Fibromyalgia lupus and the list goes on..w/b Donna:angel:[/QUOTE]

I wanted to add this runs in families but is more severe in some people than others.

ddill 12-26-2012 01:16 PM

Re: 30+ years of RLS
 
I had fibromyalgia when I was working but retired in 2005 and am much better now. of course the RL continues to worsen each year. I agree that it is very difficult to describe the feeling but I like your definition of torture. Aren't drugs wonderful!

junebugzz 12-28-2012 07:03 AM

Re: 30+ years of RLS
 
[QUOTE=ddill;5109057]I had fibromyalgia when I was working but retired in 2005 and am much better now. of course the RL continues to worsen each year. I agree that it is very difficult to describe the feeling but I like your definition of torture. Aren't drugs wonderful![/QUOTE]

Yes drugs are wonderful when you find the right drug for your condition. I wished we could tell EVERYONE go to the dr and get yourself some RLS medicine if you have RLS. And let your dr. know if what they give you completely works for you are if it just works some, because some people need more of Mirapex and some people need less. My dr. told me if I get where the three mirapex aday aren't doing the job then she will increase the strength of my mirapex..thats so wonderful to know a dr. cares enough to work with you on your dose whenever it is needed. Hope you had a very Merry Christmas, and Happy New Year to u too! Donna

ddill 12-29-2012 07:13 AM

Re: 30+ years of RLS
 
I have an older sister who lives on the other side of the country but both of us are affected by the RLS. My middle sister does not have the RLS though.

Something else--do your legs jerk for no reason at all? Even when the meds are working and the legs are ok they are known to just jerk. I've never thought much about it until my husband and I were discussing an upcoming surgery on my ankle and was wondering if my leg would jerk during the surgery. :confused

junebugzz 01-03-2013 03:59 PM

Re: 30+ years of RLS
 
[QUOTE=ddill;5110066]I have an older sister who lives on the other side of the country but both of us are affected by the RLS. My middle sister does not have the RLS though.

Something else--do your legs jerk for no reason at all? Even when the meds are working and the legs are ok they are known to just jerk. I've never thought much about it until my husband and I were discussing an upcoming surgery on my ankle and was wondering if my leg would jerk during the surgery. :confused[/QUOTE]

Yes, I really have RLS in my whole body and i will jerk all over sometime. My husband says I jerk in my sleep alot. I look like a puppet on a string when I get to jerking sometimes. My dad has RLS and a ton of my cousins and some other family members.

ddill 01-03-2013 05:32 PM

Re: 30+ years of RLS
 
I never thought of it as a puppet on a string but yeah, that is a good description. My other problem is that my legs ache. Don't know why but they just ache from hip to toe.

cinder 01-14-2013 05:49 AM

Re: 30+ years of RLS
 
Hi Ddill

Just checking in to see how you are doing? I didn't want to lose touch with you. Only 2 more weeks. I am doing good. Got my hard cast on last week. I return in 3 more weeks. Please keep in touch. Thinking about you.

ddill 01-14-2013 02:42 PM

Re: 30+ years of RLS
 
Cinder - So glad to hear from you! and you are doing well? that is great. I got a call from the hospital for preadmission but nothing else. Trying to keep busy but the waiting is driving me nuts. I still have 17 days left. How are you getting around? crutches? knee walker? I have a zillion questions for you. btw do you also have rls? i'm concerned whether it will affect the surgery...

cinder 01-15-2013 06:15 AM

Re: 30+ years of RLS
 
Hi ddill

I didnt want to lose touch with you since we can support each other. You are getting there and I can assist you in any way I can. Take care and and do some things for yourself like get a pedicure and shop and anything you enjoy. Pedicures feel good on your legs and help with circulation which is good before the surgery.

ddill 01-15-2013 12:29 PM

Re: 30+ years of RLS
 
Did you get a pedicure before surgery? I'm thinking they won't like painted toes??

Exmouth 08-22-2013 08:43 AM

Re: 30+ years of RLS
 
[QUOTE=ddill;5110066]I have an older sister who lives on the other side of the country but both of us are affected by the RLS. My middle sister does not have the RLS though.

Something else--do your legs jerk for no reason at all? Even when the meds are working and the legs are ok they are known to just jerk. I've never thought much about it until my husband and I were discussing an upcoming surgery on my ankle and was wondering if my leg would jerk during the surgery. :confused[/QUOTE]

I have had surgery on my right foot. 8 years later I still have pain 24x7. The Dr. said he had to strap my legs down during surgery. Plus I think my foot still hurts because my foot would jerk from RLS, while I was still in a cast. Good luck.

Damian46 08-28-2013 04:51 AM

Re: 30+ years of RLS
 
It's very odd the way RLS changes as the years go by. For me it use to be isolated to just both of my legs, now it's my left leg and arm. I'm finding also at times when it's really starting to kick in my arm will randomly move. And not just a small twitch, It will actually swing out on it's own. Thankfully so far a relatively small does of requip is working for me. But at night when I'm trying to relax with my wife an watch TV it starts kicking in really bad (Usually around 8pm). If she lays over on me while watching TV it gets worse fast. I think it's an added feeling of being closed in that does it. When we go to bed she can't snuggle up to me for the same reason but in the morning, no problems. Very odd condition.

ddill 08-28-2013 07:26 AM

Re: 30+ years of RLS
 
I agree w/Damian that I am unable to lay close to my husband and relax w/o everything immediately aching. Requip didn't work for me but everyone needs to find the particular drug that works for them. Mirapex works for me but had to increase to four a day and the problem with that is it makes me sleepy--even when driving!!!


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