My RLS is now ca 45 years old

My RLS is now ca 45 years old

My name is Kolbrun and was diagnosed with Epilepsy 50 years ago. Around the same time my neurologist found out what was irritating my legs and arms was RLS .

Now my clock is 23:00. My legs are killing me, I feel like I have pain in my bones. So there is nothing left but walk around, listen to audiobooks and knitt in between. My epilepsy was cut away,a small beneign tumour , 15 years ago, there still some rests left and the last time I was without sleep for 2 or 3 nights I got a seizure- I become confused .

I hope we all get some sleep this night-4 hours isn't too bad.

Good night

Kolbrun

12 Replies

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  • It is myself again

    just to let you know that i magaer tosleep from 01:00 all the way through 02:30

    My whol left side hurts so I am walkabouting the house once again with my knittingNow I feel like I could not take another minute of this.

    I will get my electric blanket, ans sit on it I find that it helps with the heat

    Hope that you have all slept sagely and sound.

    Kolla

  • Hi, i dont understand too much about epilepsy. Are you taking any medications for your RLS or anything else. I tok get alot of that pain that feels deep in my bones altho i know its not, its just part of the pain that some of us get along with the RLS.

  • Elise yes I am still taking medication for what is left of the epilepsy.just one kind though.

    Two kinds for my RLS Soffril and rivotril

    Steroids for my poly myalgia and giant cell arthritis

    Amilin on and for my insomnia.

    I have one neurologist for my head another for my RLS. One reumotologist takes care of PMR and the GCC a fourth one looks after my eyes. And yet another one looks after my

    heart.

    All the best

    Kolla

    P

  • Hi, I have been on a trip for the last 8 days, so looking around to see who has shown up. :)

    Are you spellling Soffril right? I pretty much can say what any med is, but am wondering if you are misspelling the generic for Mirapexin? I see no meds on your list that could cause your RLS to be worse. When I was on and off steroids, had less RLS, but we are all different. Good idea to keep a diary of when it comes on; you have quite a list of thns to keep track of; I feel your pain, trust me. :) I had grand mal seizures up until the age of about 26, and they stopped. Have lesions on the left side of my brain, but have not had a seizure in centuries (seems like) it. Your epilepsy med could/might help with your RLS and or nerve pain. That class of meds sometimes helps, but you have been taking them for a long time, so chances are it sounds like they are not heling RS, but good insurance against the sizures. Had one in the middle of a movie theatre once during the movie. arrrggghhhhhhh!

    I et what you are dealing with, with glad your seizures are so much improved!! rlshelp.org has a great treatment page, and you can write to the RLS expert neurologist there, or look at the treatment page, with support groups and really good links to go to that have reputable information. also, books. Not pushing his bookds at ll, he is an advisor to the RLS Foundation's board in the US, and his are the best that he co wrote with other experts that have led RLS research for years.

    Most of us are at different levels of severity of RLS and a mess here, so don't feel alone. we're all in it together. :)

  • Dear nightdancer

    From reading your text I relize that you know what it is all about. You are right there is an extra f in my spelling, Sofril and it is a generic for pramiplex.

    My most famous grand mal was comming out of the terminal building at Keflavik airport ,comming from Paris.

    The next thing I knew was 24 hours later and paralysed on my left side, but it came back in a few days. I was rather fond of my epilesy.

    Thank you for pointing out other places to get help. I must say that I am very pleased with my RLS expert. And having had "longterm" illlnesses for 50 years I do not feel alone with any of my 6 diagnoes ICD-10.

    But it is good to meet others that have some sort of ability that is not so common since you have met the same or similar attitude from people that do not know anything about your condition but keep giving good advice.

    I hope that you understand my English. I know it is not all that good.

    all the best

    kolla

  • I asked what meds you were taking, as some medications can make RLS worse. But i dont know anything about the ones you are taking, apart from the RLS ones. Someone else might know more about them.. I am not saying what you are taking is making it worse. It was just a thought..

  • Hi

    Thank you for your concern. I know that you have to be extra careful if you are taking medication for different ailments. Some medicine do not go together. I have been there. Once I spent a week in hospital while the medicine settled into their right place, Now I recognise the symptoms. All thr best

    Kolla

  • Hi Has anyone ever heard of Tiagabin causing RLS. I know it can be used to treat it, but I'm convinced it is was started mine.

  • I feel not so isolated knowing that there are others out there suffering severe RLS like I am. I was wondering what foods to avoid aparet from the obvious like caffeine? I can no longer work with it and it has got worse over the years.

  • dear peterk

    I have been looking at this with food and my condition. What I have found out is the food is best the nearer to the original the healthier it is.

    There is a .diat called Paleo or Caveman diet I like reading. We have tried some of it. paleocookbook.com will give you an idea.It is either start walking around or

    knitting.

    No I have decided to go to bed and be pleased about that I can sleep and how lucy I am to go out for a walk tomorrow.

    Thank you for listening to my complaints

    kolla

  • Dear Kolla

    Thanks for your message. I do know about walking but over exercise makes mine much worse. I don't think I would be any good at knitting! I read the comments regarding how bad your symptoms are. Thanks ever so much for your answer and the diet details. PeterK

  • Hi there

    I agree with you about exercise, never overdo it. My problem is to know when I have overdone it. But it is important, I think to have something to occupy yourself while having a bad time with your RLS. I got an iPad for my birthday last summer, I play a lot with it and the laptop as well. Listen to audiobooks is something I do as well.

    All the best to you

    Kolla

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