I am a 68 year old w/f that has been trying to deal with my severe RLS since I have been 15! I Rembrandt my first couple attacks. I come from a family of 8 girls and remembering.feeling some crazy feeling in my right leg! My 93 yr old mother and all my sisters have the dreaded RLS feelings in my leg.we are all very close and freq exchange info but not until about 20 yrs ago. I always knew when my mother was pregnant with my younger sisters by seeing either my grandmother RN or the doctor arrive every Saturday morning
for my mother’s weekly iron shot.she always had low iron but those levels level would fall to the floor.through the floor when she was pregnant!.For ten years, I from 2005-2016 , was infused every 2/-3 weeks when I suffered with low iron! ( That thought was heavenly to lay on the couch and watch the soaps but it turned out that I was total exhausted to do anything! )🥺☹️ I never had severe RLS attacks during that time, either. I also treated with anemia for 10 yrs mother get her iron shot every week while she was pregnant and with 7 sisters and herself, that was a lot of Iron shots she got! We suffered with what we called our “funny leg feeling”. Mom would walk the floors and caring one of my sisters just to trying to come out RLS attacks. iMy grandmothers on both sides never had systems! They never hadit but all the sistersand mother had it. I started with maybe 1 times a month, last maybe 15-20 minutes and be the time I walked a few mins, it was gone!,
As I grew the attacks was-was more freq to 3-5 times month! But it wasn’t discussed until a camping trips with all the sisters. In the early 90’s we started a journal on out attacks! We all called it something different. I would watch my sisters get up and walk the length of the cabin trying to get rid of it! About 15 yrs ago I went from a few a month( as like my sisters) head back to bed after 10-15 mins! Well, I am not to sure if I won the prize just like the horses at the race track, I was off running!
I have it now and starts as a little tingling in my my left leg, I hav in in both leg and both legs and although I would technically have no pain from the RLS attacks but with a disability over 30 years ago with sciatica and femoral nerve damage so the pain came in while kicking . It feels like a shot of electrical. What lasted then has least 1 every 2 days, lasting from 15 mins to most recently 3 hour attacks! What scares me is the sharp increase in length of attack, severety, all hours of day and night and I started to get uncontrollable upper body movements that exhaustesbwe for hours. At times I would set out of the bed and onto the floor so I didn’t hurt myself during those violent attacks. I have 2 studies with the university of Pennme . Some people experience some different! One of the people ask about caffeine and chocolate and even a bottle of Pepsi or a chocolate bar will guarantee me an attack usually with in 12 hours!! I have a neurologist for 30 yrs and for the first time in y life I cried for 3 hours straight! I would think and cry because I don’t like going
it! control, I recall when I would feel this tingling in my ankle and I am off again! My worst times have been for the last 3 years and when I feel that tingling I figure I have a good 5 mins to get to my bedroom so if I need him, I can wake my husband! During one very severe attack, I looked at my husband as my attack progress, I would see that helpless look in his eyes cause he realized that him had no idea how to help me. He would throw me some pillows cause he would feel helpless! And he is right, if I can’t control my attacks then he had no idea how!
I know what they are but that is it! They say to get in the shower during these severe my attack never really help but my bathroom flor was shiny from all the water I splashed on the floor. What used to be the nighttime attacks but I have them morning and .afternoon because I was tired! My most severe attacks. Sometimes the attack comes morning, noon, night any where from 30 to an hour. I Over the years I have written down every thought before, during and after my attacks and still can’t control itI can’t put my finger on it!After 40 years of marriage, my husband and I joke about the bad ones because if we didn’t we would never stop crying!
As a child we all were healthy, common childhood diseases we no problems! My mother had polio during her 3rd baby but no sever problems! Over the last 2-3 years
I also take medication CARBIDOPA, fast acting carbo. And the best part is, I have tried everything but passing by the nurse called me in and gave me samples of he drug called HORIZANT and with a lot of tweaking and daily checking, I can say it is works wonders! But if I miss one pill I know that I will have those feeling! I am tired and if I push, I know that them tinging in my feet! For most of my life I could never know which leg will start, but since of have found by mistak.
This disorder will drive the best of them crazy.I know this because,” I have been living this for a very long time! them cause aI live it every day! I only wish more doctors and hospital people would read up on it and. Do not want meds.