After 20+ years of suffering RLS being on all types of medication, sleepless nights etc, ive just done my 4th night without any medication and no symptoms. A few of you will remember my horrendous journey. Still waiting on my DBS surgery. I fell badly 2 weeks ago, injured my left leg and side. In agony but just torn tissue damage to my knee but pain has gone into my back and left hip. But RLS is slightly there but its gone. Not needing any medication. I was on 4mg roprinol but taking 8mg and gabapenton 1000 x 3 a day, duloxetine and anything i could get my hands on. Been on and did cold turkey on premipexole, diazapan. Progabline,u name it ive been on it. I dont recommend falling and i hope im not jinxing things but i cant believe RLS is not effecting me for 4 days and nights. Not in my arms hands, no compulsive jerks, nothing. I think i have a trapped nerve with the fall but as you all know RLS is horrendous and whatever damage ive done its gone, well its manageble.
I had an horrendous time leading up to my fall, awake for 3 or 4 nights, not being able to sit stand walk etc without the kick outs and jerks 24 hours a day. Wen we say we dont sleep we all know we mean not a second. Had extreme fatigue with painkillers making me so tired and no sleep. Not knowing whst day it is as i was out of it with brain fog, side effects of mefication.
I am praying to god that its gone. Honest its effected my me every day and night for 20+ years. I csnt honestly believe it.
Has anyone experienced this? I was on maximum tablets i could take. My gp saix there wasnt a diff route to go on as i tried everything. Bad Reactions to chlozapan . Please if you can read previous posts ive posted as honestly, like aĺl of you my journey has been absolutly terrible. I would not wish this on my worst enemy.
I would gladly hop around for rest of my life just taking paracetomol and iburofen with leg hip and back pain.
Yes the last four nights ive had to move my leg to get to sleep but thing thats habit forming. The pain in top of my leg is like ive done a massive work out at the gym. No RLS though in any other joint. At first it only ever effected one limb at a time but it slowly increased to both legs arms even my neck at any one time.
I really just dont understand it. I dont really want to as long as it stays away.
I feel like im gloating but im really not. Im just hoping thro my fall that someone may read this message and maybe and just maybe find some kind of research that muscle or even nerve damage may play a big part in recovery from RLS and discover a drug that may work.
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Banjo1
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I was. I was on double what is recommended. Honest plz look at my previous posts. Im waiting for DBS surgery also. Im only taking iburofen and paracetomol for the pain from my fall and putting iburofen gel on my left leg hip n back. My partner has said hes not getting disturbed too during the night which was a major concern with him. I really really am praying its not just short term
What I find interesting is that ibuprofen usually makes RLS worse and you are not reacting to it, even off all your meds. I’d be climbing the walls. Makes me wonder if you were diagnosed correctly to begin with, or if you had something else. My RLS started about 10 yrs ago after a knee replacement. Never had it before that.
Almost unbelievable. I am so happy for you and I hope with you that it last. I can really understand that you say you gladly live with the muscle pain as long as the RLS stays away.
Enjoy and recuperate. It may not last, but I really hope it does. And if the RLS returns, I hope you can quell the symptoms with far less and far lower dose meds. Btw, how is your iron?
That's very interesting. RLS is linked to our nervous system and it sounds like your fall may have "tweaked" the pathways (I'm not a doctor and so I'm only guessing). I've got a bad back and have been wondering for a while if there's any link. It would be great to hear from others who may have experienced something similar.
A fascinating post. Here again is some evidence that rls might be related to muscle/ body damage rather than a genetic disease. If there was enough evidence researchers might begin to look there rather than directly targeting the brain. This in turn might help to develop non drug therapies.
I know the agony of RLS and I can’t begin to tell you how happy I am for you. I hope you stay symptom free. I really do. Miracles do happen so this may be one 😁👍. I am symptom free on and off but I manage it without meds and I will keep going like this for as long as I can. Personally, I find stress, sugar and processed foods (pizza especially) trigger the RLS without a fail. I love pizza and chocolate so every now and then I decide that a good pigout on pizza and chocolate is worth the pain 😂
I've heard of more people experiencing strong relief from RLS after an accident or surgery. Even the symptoms disappear. Personally, I think a strong recovery response in the body starts with high endorphins and dopamine levels. It would be so nice if the effect was permanent. That would be a really great reset! I pray for you that the enlightenment may continue!!
I would be grateful if you could avoid posting in Dutch. We can of course use google translate but I note that you have replied excellently in English in other threads. Many thanks.
Thank you River58 for your understanding and for your kind words. Thank you also for editing your post written in Dutch too. It really is appreciated. 👍😀
Hi Banjo1,I am in a similar situation as you are. I have RLS, and I had a bad car accident, ten days ago. No broken bones, but severe bruising and swelling, especially of my lower left leg. I have quite a bit of pain in that leg, as well as my chest (from the seat belt).
Since I had the accident, I have had no RLS symptoms. I have been taking Pramipexole, but have barely been using it since the accident. I wonder if my brain has been distracted from the RLS because of my injuries, that my body is concentrating on the edema. I know that RLS is a nervous system disorder, and I can't explain the respite, but I'll take it. The pain isn't as bad as the RLS.
I hope, for both of us, that the RLS doesn't return, but I think it's temporary, until we heal. All the best to you.
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This RLS is a real bitch! Can I say that?
Has anyone had rls change to something else?
This might be it I believe?
2 months of RLS and Alpha Lipoic Acid worked last night
