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Hi, I have suffered with RLS since i can remember, some...

Posted , 10 users are following.

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Guest

Hi,

I have suffered with RLS since i can remember, some of my earliest memories as a child are of RLS.

Over the years i have complained of this condition to many Drs and specialists, i have had xrays and blood tests, most Drs or specialists laughed me off, one even said it was spiritual.

After one very bad night, i was near suicidal, i went to see my Dr and told him if he did not look into it and take me serious i would sit on a train line and wait to have my legs chopped of. He did take me seriously and over the next few years i tried many many medications, all of which had no effect on the RLS.

I then tried Cabaser, this actualy did make a difference but the side effects were so bad that after a year or so i stopped taking them, durring this time i became agrophobic .

The reason for this was that the Cabaser made me feel like i was constantly shaking inside, i would have to hold on to something solid to steady myself even though outwardly i was not shaking.

RLS destroyed my childhood, my schooling and my youth.

As i get older , im 41 now the RLS is getting worse and effects my hips aswell as my knees.

I was signed of work for a while and with some Prozac and being able to rest when i absolutely needed to things were not to bad, i had no stress and managed quite well.

I was assesed for incapacity benefit and the Drs laughed me away , they were totaly dismisive and did not understand how badly this condition has effected my whole life, i would say it has ruined my life.

Every partnership i have had has failed, twitching in bed, seperate beds, staying up all night and mood swings saw that all relationships ended quickly.

Every girlfriend i have had has asked me after the first night of sleeping together what was i doing all night, they all thought i was masterbating but i was infact just twitching and stretching my legs.

I hate this condition and at times i have been suicidal.

Anyway i am at the moment appealing against the desission not to allow me incapacity benefit but it is realy hard becouse i am infact mobile and have no problems walking, the Drs do not seem to understand that my problem is sleep related.

I am at my whits end, i can not go back to the grind and worry of having to get up every morning at a certain time, if i have not slept all night getting up for work is real problem.

Every job i have had has only lasted about 3 months before i am sacked for arriving late or taking days of to sleep.

What does one do, to be honest having had a life of disturbed sleep i am now looking forward to the Big Sleep.

In the past i have tried many ways to relieve the anguish for want of a better word, i have tried cold treatments, warm treatments, oils, creams, changes in diet, exercise, pills, you name it ive tried it.

I have tried to sleep with my legs raised to stop blood flow, i have beaten my knees with a rubber mallet and pieces of wood, i have stretched in such ways that i have given myself groin strain.

All give very temporary relief, but the feeling always comes back shortly after.

I wish my legs were painful, i could live with that , but this feeling is just too much sometimes.

I put myself in painful positions to override the feelings in my knees, the pain is better than the feeling, after a while the pain turns to numbness which is a great relief but it soon wares of and its back to the horrible feeling and needing to move my legs even though i have just hurt them in the process of trying to find some relief.

This is a living hell and most people i talk to about it simply do not understand, even the Drs and Specialists.

Where does one go from here ?

I feel the Big Sleep is the only real answer but i would like to continue to live, saying that to end it all would be just as good.

Sorry to write such a downer of a letter, it is the first i have wrote on the subject to any website or forum.

thanks for reading, and i hope no1 else suffers this nasty desease as badly as i do, if you do then i fully understand how it effects your life, i wish people could understand how it has and continues to effect mine.

[i:e1ffeecbaa]This message was automatically imported from the original Patient Experience[/i:e1ffeecbaa]

1 like, 18 replies

18 Replies

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  • Sasssey
    Sasssey Guest

    Posted

    I have also suffered with RLS for 30 years.  It is miserable and I understand how you feel.  I guess that yours is worse then mine as I was able to get enough sleep to get up and work.  I was born and raised in Florida and lived there most of my life.  I moved to Arizona  in 2000 .. The Dr. I was seeing put me on ( Clonazepam ) Is helps sleep and is also given for other things.  She told me that her father had this and his Dr. Put him on Clonazepam and it worked for him.  I tried it and it worked for me for quite a while.  After 5 years I moved to Texas.. I still took the pills but they didn't seem to work as well.. then I had a break from RLS for the entire time I lived in Texas and I could not tell you why.  I lived in Texas for 9 years.  After that my husband retired and we moved to Florida.  My restless legs are worse then they ever have been.  The pills don't work anymore.  I tried some liquid gel that is used for muscle aches and pains.. It is called Flexall.  That is what I use now every single night !!  It works for me most of the time.  I thought I would let you know.. you can try the Flexall first.. I have to put it all over my legs.  You can usually buy it at a drug store or on line.  I have been buying mine on line now. I use alot of it.

    Good luck and I really understand what you said about people not understanding what it feels like.  I can tell you for sure people don't understand because I can't even explain what it feels like.. it is just miserable..

    Good luck and please try one of these or both.

     

  • shirley07472
    shirley07472 Guest

    Posted

    your comments were one of the first I read and I truly understand how you feel.

    Your comment about the pain is true as most people have experienced pain as it hurts but the sensation that one feels with RLS is hard to describe but it is not pain.

    When I experienced rls as a child it  was pain that I felt at that time.

    My husband has suggested several times that I look to have my legs amputated and I always blow him off but lately there are times maybe it wouldn't be as bad as feeling these nightly movements.

    Due to my limited sleep I was unable to do my job adequately and decided to quit the work force and take the time to relax and get the sleep I have been missing.

    Unfortunately I need to keep busy or the sensations in my legs start up earlier.

    Your Dr. sounds like  dick ask him to refer you to  sleep clinic as that is how I was diagnosed  or seek another opinion from a physician that will listen to you. 

    RLS does change your life s I hesitate going on road trips as once my legs strt up they are hard to control and unfortunately I become irritable .

    Your experiences you have described are very similar to mine.

    Keep the faith and keep on your doctor. Remember the squeeky wheel gets the crease.

     

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