Evening all
Long time member, very few posts. Sorry, it's a confidence thing. Does anyone ever have the urge when the RLS is really bad to hurt yourself? It just used to be my legs I constantly hit over and over, now I find myself hitting myself across the face, and slapping my head really hard. Thank you for reading x
I've thought of killing myself over the RLS but I'm not a big fan of pain so not hurting.
What does the hurting do for you? Is it distraction or a release of tension? Could it be, a bit like scratching something itchy, are you replacing one sensation with another to cancel it out?
I can't say hitting your head would be wise, maybe you could plunge your hands into ice cold water - holding them there or exercising until you ache and drop might be better for you than your current technique. An elastic band round the wrist given a good old tug can cause an almighty sting and again less damaging than hitting your head/face.
Take care.
Thank you Raffs, I would say it's out of pure frustration that I do it. It's been going on for many years now, I'm a person who always tries to help people have some sort of answer for them and words of comfort, and I hate not being able to help myself. I will try something else to distract me. Thank you again x
It's a very common thing to want to hurt yourself with RLS something anything to stop the pain .I just walk and walk in my house and take extra meds I can be like that for hours ,and sometimes more and more I have full body RLS and that's when the pain is beyond belief .Be careful with you're head it's precious .xx😇
Hi Matrix, thank you. I also do laps around my kitchen, much to my dogs displeasure, when she sees me she has that look, oh no crazy lady here again disturbing my sleep lol. So sorry you have full body RLS, I don't think I would be able to cope at all with that. I promise I am going to try and divert myself from hitting by doing other things. Thank you again x
You're welcome and I do hope you can stop but I totally understand where you're coming from . It's not all the time full but that is happening more often .I have had some nights when I have pondered cutting limbs off ( not really but sometimes I would do nearly anything to stop the pain ) but knowing my luck I would have that where people feel real pain in the limbs that are missing . Take care hope you get some rest tonight . I walk from end of hall into kitchen then lounge around coffee table and back to hall .etc etc .and that can carry on for hours , I'm feeling legs getting restless now and achy xx😇
I think many of us get into that situation- as previously stated- it's a distraction matter.
What medications are you on for the rls? Perhaps they need changing if they aren't working any more.
There are solutions to rls and it shouldn't be necessary to go through what you are without doing something about it.
Let us know what you are on and your history- there is a wealth of experience here only too willing to help you. Most of us have , and are , travelling a road similar to what you're on now.
There are reliefs and strategies available.
Good luck.
Hi Madlegs, thank you. I was on ropinerole for many years, then they stopped working, so I have been on the lowest dose pramipexol for about nearly 12 months now, was ok at first, but now it is getting quite bad again. About 5 months ago I was prescribed gabapentin for my back problems and was told this should help with my RLS too.
So if I see my doctor I don't think he will do anything about it. I am going to try do something else when I want to hit myself. Thank you again x
Hi maybe you could add in an opiate painkiller such as Codeine or Tramadol. You could also be having augmentation from the Pramipexole x
Hi Hugorune, I really feel for you, it sounds awful. I do think that you may have to persuade your GP to change your medication. I am on 2 mg Neupropatch and 1 Clonazipam at night which works for me. When it still gets bad for me, 2 co-codamol help me get to sleep. However, with all our meds we still need to be aware of our TRIGGERS!!! We all react to certain medications, sweeteners etc. Have you thought of trying out a Fodmap diet and slowly introducing foods to see what your triggers are. I cannot eat strawberries, apples, grapes, raisins, peaches and nectarines without getting severe RLS inspite of my medication. I am also carful with spicy food, onions and garlic. For most people sugar is a big one. At the RLS AGM we were shown exercises to increase our muscles, because increasing muscle strength increases dopamine. Also we had a lecture from a GP. When you visit your GP, it would be helpful to show him printed pages from the RLS website about the condition and the various medications to try out. When one stops working, we should try another one. When that stops working, try something else. Also check out your iron levels. My thoughts go out to you and hope things will improve for you!
Sorry for late reply, had a stressful few days. Thank you Fay, I have an appointment at the end of the week so I will go in armed with information. I am on slimming world at the moment so not really a lot of sugar (if any) I have because of this been eating more fruit, think I will leave out the new fruit and see what happens. Thank you again x
Hi Hugo, good luck. Fay
When I was first diagnosed at the age of 48, the specialist looked at me after reading my Quality of Life statement and said, 'How old were you when you first considered ..... '?
There was no need for him to finish the question. I instinctively knew exactly what he was asking.
My answer. I was 12, but at that age, in the early sixties, I thought the only way to do it was with a gun and where would I be able to get a gun.
You're not alone. I'm sure many of us have been down that road at one point in time. Take care xx
Hi Phogan, I was on my way to bed when I caught your post about your Quality of Life statement. Please tell me more about this. I've never heard anyone being asked about this in the states and it's a subject that's been on my mind. Not about hurting myself but about making my own VERY CLEAR decisions when my time comes.This past weekend I saw a lady on public television talking about this very subject. Her name is Hattie Bryant and she has written a book: "I'LL HAVE IT MY WAY". I sent in my donation and ordered her packet. She explains how to go about not getting caught up in hospitals and too much medical care at the end of life. She calls it having a peaceful death without all the fancy care that is often unnecessary. And how to set up legal paperwork in order that our final wishes are followed. There are legal documents available but often they are very vague ; she believes we have to be very concrete about our wishes. I can't wait to receive her bookand dvd's. As I get older this becomes important to me. It's very interesting to hear of such a conversation that is so ignored in the US. Tell me more. Also, in another vein, I agree with your statement about feeling sorry for the person we were posting about earlier. As I'm fairly new to the site I'm still trying to figure out the posting rules. And what do we do if we are asked to delete a post? Don't hurry to respond tonight if you are tired. I'm going to sit in my shower now, try to sleep and will look for your response tom morning. Thanks for helping me with my posting experiences. Also happy to hear from anyone else with advice. Thanks, Burma. (burmag)
No nighttime here it's 12:30pm about to go have lunch.
I think you may have misunderstood my meaning of quality of life statement. It's a statement concerning how rls has affected my life. I wrote 5 foolscap pages and once I began typing I couldn't stop, it just flowed out.
The first two pages was how it affected my childhood and how it was still affecting my life.
The next page was titled MY description of RLS. Next page title was FALLS (once again MY
Hi, Phogan, Sorry I misunderstood.I still think your post helped me bring up information that as an older person I should be dealing with more and more. As I get older and possibly sicker, I don't want nursing homes and others defining my quality of life. This is very important to me. One of the things I am in the process of doing is leaving my body to Emory University..(Its a very involved process re paperwork) I'm not big on funerals and all the trappings. I'll be gone (hopefully to better places) and if someone can learn from me after I'm gone I'm fine with that. And if someone can use any organs, et al, they are welcome to those too. Take care, Burma (really am going to bed now!!!)
Sorry for late reply I have had a stressful few days. Thank you Phogan, take care as well x
Sorry 'bout that ... more hurry less speed!
MY description. The final page title was Medications.
Apologies for any misunderstanding. My excuse .... Aussies sometimes have difficultieswith explaining themselves correctly. 😐
Hi again Burmag. I too had never heard of quality of life statements,
When I was diagnosed, I jumped on the net and searched and researched. Came across a Californian website. I joined and was immediately asked to forward mine.
My whatttt?
I was sent an excerpt of one. I started typing and couldn't stop. 'So that's why I thought like this, so that's why I did that, so that's why I feel this way. OMG OMG".
Somebody once asked me if they could read it and I couldn't find a copy. My BFF found it on her pc.
I was only halfway thru the first page and I had tears running down my face. I'd forgotten most of it. My friend looked at me and said, 'You never had a chance did you"?
Now I have no idea where any copies are. I know my specialist has it on file. I'll photocopy when I see him.
CONGRATS TO ALL OF US FOR SURVIVING. AND I'LL HAZARD A GUESS THAT MANY OF US HAVE EXCELLED.
Constantly, when the pain was in my calf. I would bounce it over a hard edge hundreds of times. But it felt so good compared to the RLS. I've punched it, and even beaten it with a hammer.
Maybe it is a distraction, but the pain feels good for a short time, and then the RLS feeling returns, so i start again.
Probably would make no sense whatsoever to someone who hasn't suffered with RLS.
Hi Hitechwreck, sorry for late reply, stressful few days. Thank you, I know exactly what you mean. It frightens my husband when I start hitting my legs really hard, cant say he has ever got used to it. Thanks again x
I have heard of this, I don't do it but it's not uncommon. That doesn't mean it's good for you though. Wondering what else you've tried?
Hi Elles5, I do laps round my kitchen, sometimes ipad in hand reading for distraction, massage, bouncing on the edge of a step till my calf muscles scream with pain !! lying on the floor with my legs up against the wall, which is difficult because I had a total knee replacement two years ago and I have problems with bending and straightening. Thank you x
hugorune,
Yes, more times than I should (which should be never). Can I suggest something, though? I know that we are not rational when we hurt ourselves -- that we are unable to think about anything but the pain (emotional and/or physical). So what I'm about to suggest might be too hard to do, but do you think maybe you could recognize the thought "ok, I'm about to hurt myself" and step away from it? Could you maybe go distract yourself with something else -- anything else? Also, it might be good to have written down somewhere you can see it (like the fridge) that by hurting yourself you are leaving marks (some of which can be permanent depending on what you do) on your body. You'll also want to include how you feel after the fact. You'll want to write these down as an anticipatory rational conversation with yourself when you get to such a dark place, especially since we are not capable of such a thing when in it.
Hope this helps.
Stay strong,
Hi Jess, sorry for late reply stressful few days. Thank you. Since first posting this, I am trying really hard to distract myself, early days but hopefully I will get there, thanks for the suggestions, I will incorporate them into my night time routine. Thanks again x
I think it's a masking strategy. The brain focuses on the pain so the RLS is not registered. Fortunately my RLS never gets that bad but I often find myself rubbing my feet together in bed, or moving my arms to a cold area of the bed till it warms up, and then have to find another.
I've just started to deal with this RLS stuff. Research has indicated that an iron absorption is a common problem . Not necessarily a deficiency, due to the fact that tests for anemia don't show you are anemic, it's a matter for not being absorbed correctly. So I've been taking 65mg of iron and as of late, have not been having as many issues with RLS. Just thought I'd share what I've discovered for myself....good luck everyone!
Thank you V, I am thinking of checking with my doctor about iron at my next appointment. Thank you again x
Accessing Iron Infusion
Advice please 
Doctors unaware of low Ferritin effect 
Things have gone a bit crazy
Thank you!!
