Feeling your pain

First post ever, severe symptoms, nearly dropped dead heartattack at 50yrs,bypass surgery 8yrs. post op. Diagnosed then with rls Tried Myrapex ,worked initially, cried when could sit still for first time in decaded,yes decades Suffered unknowingly,didnt know what I had. Effects every aspect of my life. Sleep,mood, motorskills , life.Every evening is preperation for battle to mabey snactch 2 or 3 hrs ,usually 4 to 6 a.m. then up and try and go to work. The mental drain is enormous. Taxing me to my limits. No choice but to try and carry on. Painter,ladders ,roofs etc. Fell 15 feet last yr. Lucky wasnt killed. Wish you all luck. Myrapex helps, 3 tabs at 6p.m. then nod all nite. Effects still on me as I drive to work.

10 Replies

oldestnewest
  • Welcome Minuts. You really have been through the mill. Many/most on here will relate to your experiences with RLS. And now you probably face being told that you should watch your consumption of mirapexin as it can start to effectively 'feed' the RLS symptoms after a while.

    It is worth reading around the site. There are loads of suggestions and lots of information but more than anything else it is great to be in a place where everyone understands the frustrations and misery of living with RLS. There is no way you should settle for 2 or 3 hours sleep a night, particularly if you are working. Inform yourself of the options and go back to your G.P. or consultant and insist on a more meaningful engagement and additional/alternative treatment.

  • Dr's,they don't callit "practicing "medicine for nothing. Its like trying to describe a horrible traffic accident,in one ear and out the other but if they saw it themselfs (our suffering) quaking,shaking,goin mad mabye they would have a better understanding of how debilitating this disease acually is. You try and explain but...Thanks for the input,be well, as possible.

  • "practicing"; I love it.

    I wouldn't wish permanent RLS on anyone but I have often said that I would like some of the health 'professionals' I have come across to experience 3 or 4 RLS nights. It might focus their minds somewhat

  • My currant Dr. (changed after previous Dr. just kept giving me anything and everything, guineapig style) was on oxy,tramadol lyrica (caused. psycotic reaction ended up in e.r.) along with my heart meds which don't have side effects I was taking a HANDFULL of stuff everday out of desperation. Pramepixole gives me predictable relife,couldn't imagine doing without. So now just that and heart meds. Funny but being able to just sit still is sometimes enough. Not sleeping is easy compared to full blown symtoms. We endure.So I tell new guy to verse himself on rls before I come in. I arrive hopefull and ask him what he knew about my case and his plan of action.Buisness as usual, try this try that . I toldhim no new meds, no more guineapig. Valium, xanax trying to control my anxiety from lack of sleep,desperation etc. Stopped them all. Was a walking zombie.Still suffering but in a bit of routine that is better than was. Managing - term used very loosely!

  • It's amazing how this condition can make you grateful for small mercies like being able to sit still. I hope you continue to get relief with your current regime. Be careful about increasing the pramipexole too much. It can turn on you - treat it with caution. I hope you get many years relief. It worked for me - I was very happy on it - but then it stopped working and everything turned bad for a while.

  • Thanks foryour kind words, I'm pretty sure I my bad days of the past have leveled out but was pretty far out there.We shall see.

  • Its a rotten situation. I have RLS for 50 years and I have near complete relief of symptoms by following a diet. The diet has been developed by scientists at Monash University Search this forum for FODMAP and read all about it.

    Definately check with your Dr to ensure it wont upset your heart condition.

    Diet works miracles for some and nothing for others so I hope you are in the lucky group.

    Good Luck

    If I can help in any way get back to me

    Let us all know if it works for you

    Cheers

    Graham

  • Hi,sending from US of A Sounds like you all live across the pond. Thanks for listening. You are what you eat. Ill lookit over and talk to the Doc Good to get all the info we can. Constant evaluation every week to see whats working and why. Hard to keep cuurant when your mind isn't clicking on all cylinders.

  • The diet has also worked for me. Just remember, if you are going to test it, I highly recommend buying the low fodmap app by Monash university (about $8 AU). It basically lists all the foods as either safe (green light), moderate (orange light) and risky (red light). It also says how much of something you can have in one meal and overall explains what the low fodmap diet is. It seems like more and more people are starting to try the diet, so if you have any questions, there are people on this forum including myself who will help you.

  • Hi minuts

    I'm in Australia. Home of the FODMAP diet but I recommend you try it because it worked for me and some others.

    Its easy to do and if you are in reasonable health you can start tomorrow and you might find an improvement by next week! Maybe by 1 August. Read up on it on this forum

You may also like...