RLS in hospital - my experiences

As I have the luxury of internet access for a very short while i thought i would share with you all my experiences of being in hospital with RLS. Last Monday 24th i was taken into hospital with a severe asthma attack, I have been asthmatic since birth, this is part of me, so I am used to it; what I was NOT used to was the suffering with RLS whilst laid up in bed, with no puff to move. This recent attack was my most serious for about 30 years, serious to the point where my oxygen levels were 1% away from me needing to be ventilated to breath - I was scared believe me. But this is not about the asthma; this is about the experience of being bedridden with RLS!

I was very surprised when a young junior doctor, actually acknowledged the condition, and spoke to me at length, wanting to know if I had any treatments for it or not, just the fact that he didn’t say ‘what ‘s that?’ was reassuring to begin with, later when the nurses came and introduced themselves (I was in the High Dependency Unit so had nurses on hand 24/7) to me, they actually took my concerns seriously, they tried their best to make me comfortable and actually LISTENED to what my needs were. One in particular had a few ideas of what might help and asked me about massaging my legs, extreme temperatures etc., and helped me to get as comfortable as possible.

I just wanted to share that from an RLS perspective, the stay could have been much worse, as it was, I had cool sheets, cold compresses, and as much as possible sitting up with my legs over the edge of the bed allowing me to swing my legs to and fro. Compared to my last stay 18 months ago, there was no ‘fight’ to get it recognised; there was a willingness to help. A very positive step I am sure you will agree!

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  • wow, i wish i had that experience , on my last visit to A&E i was not treated like that, in fact when i got very fidgety, and asked for the rail to be taken down, they did that and left me.I got of the trolley and stood to stretch my legs and try to calm the rls, the nurse came over "back on the trolley please" she said, i explained my problem, rls, she said "what" tutted and told me to get back on the trolley, walked away to the area where the nurses where, then they were peeping and giggling, i felt totally degraded and embarressed, i dread hospitals.

  • After so long I am so pleased I have found support and others who suffer like me. I have suffered with RLS for 46 years and its getting worse. I have had several occasions when I've been stuck in a hospital bed. All I can say is it was hell! I dread the thought of being immobile and unable to get up to relieve the pain. The first time was when I needed emergency surgery whilst on holiday in Spain. It was an absolute nightmare. I was taking pergolide at that time and the hospital wouldn't allow me to take it. No one could speak English so I was unable to describe to the nurses and doctors what was wrong. In the end I took my tablets without them knowing. I am taking Mirapexin now and a few months ago was taken by ambulance to A&E with a twisted gut. (Result of the surgery in Spain). I was in agony and had been sick for hours. As soon as I was put in the ambulance my legs started. Couldn't wait to stand up. When I was in the hospital I was hooked up with both arms with drips etc but just couldn't stay on the trolley. I stood up stamping my feet from 4 am until 9.30 am because I couldn't walk anywhere. My husband just watching me in dismay! The doctors and nurses just seemed to ignore my distress! I hate it! I've just found out that both of these drugs are supposed to be used short term. I've been on pergolide for 10 yrs and Mirapexin for 8. They are trying to wean me off them as I am suffering worse symptoms now. I also get it in my arms. It is certainly family related, my mother suffered with RLS and Dystonia, (spasmodic torticolis) a continuous involuntary neck movement. Her sister has that too. Not sure if there is any connection to RLS. Just hoping I don't inherit that too! I have always feel stupid when explaining to people what I suffer from. They just don't understand how dreadful it is.

  • oh gosh that is awful :'( I must have been very lucky with my draw of drs and nurses xxxx

  • Good to hear that your experience in hospital was great regarding your RLS. Shame that Jean's wasnt the same.

    My experience in hospital when i had to have treatment was ok too. I went for a colonoscopy and i told them i was on medication for RLS, they looked it up so they didnt give me anything which would upset my RLS, or the meds i was on at the time. I dont think they actually knew about RLS, but they took me seriously and thats what mattered.

  • it is a terrible shame, i did find in the past when I was in there were professionals who really were interested in the disease. My last hospitalisation was in April 2011 (?) so I would have still been Chair then I think ?????? And the ward sister actually suffered with RLS herself and was fighting her GP to take her seriously, she became a member and finally made a breakthrough with her Dr. So people will listen, we just need to be persistent, or irritating, or annoying, or never shut up, gas bags, whingers, moaners......... you get the picture ;) Hahaha

    I would love to be able to find out if RLS is taught as part of Neurological medicine at Med school - the med school is just around the back of the hospital I'm currently in - shall I go on an adventure?????? lol....... no I'd better not...... night dancer might tell me off I promised her and Niah177 that I would behave! ;)

  • I would like to know this too. I doubt Nightdancer would tell you off for making such a valid point.

  • Elisse did you find the page you were looking for, for the 'chat'?

  • Well, you would think Neuro's WOULD be taught ALL aspects of neurology, but from reading some peoples posts on here and other support groups which includes across the pond, neurologists seem to be hit and miss on what they known about RLS...you either get one who does, or hasnt a clue...

    I would say to you, sneak round to the Med school and take a peek and do some research, but your health is more important, so yes do as you are told and stay put. :)

    Yes, found the "missing" page, i thought it might be handy for others to use when they were awake in the night.. I f am am awake and up i rarely come on to my laptop, i am one of those that have a cuppa, do a bit of pacing then go back to bed and try again...with fingers crossed for sleep..

    Hope they let you out of the hospital soon. :)

  • Nice to know someone has been treated well in Hospital

    The only way they will get me in in future is if I know nothing about it .

  • same here oldtyke... :(

  • I had a a similar experience in hospital 3 years ago after an operation to remove a disc in my neck, that night my RLS went berserk and everytime I moved the bed squeaked and I think I kept everyone awake fidgeting, it was awful. Finally I got up feeling very drowsy but had to move the legs and was ordered back to bed by the nurse who had never heard of RLS and thought it was all in my mind.x

  • "took my concerns seriously, they tried their best to make me comfortable and actually LISTENED " Wow! what a unique treat. Considering the life-threatening situation you were in, you needed such a blessing. Even when they can't fix it, listening is so important. Kudos to the hospital staff! :-)

  • That's not so good news about asthma but it's really good news

    that staff was so supportive and cared enough to make you as

    comfortable as possible.

    I dislike what happened in April for you. It is for lack of education on

    the staff's part to ignore you when you needed the help and comfort.

    I'm surprised that so few nurses, doctors know about something

    that's affecting millions of people.

    I didn't know that being restless was a syndrome, I suffered for years

    without telling people. Only my husband, my mother, and I knew what

    hellish nights I had and we called it nervousness or anxiety...I was

    being treated for it by taking antidepressants...It didn't work in the least.

    I was locked in my bed with the side rails up for my last stay for 7 nights.

    Lucky for me, I was given morphine for my knee replacement.. I would

    have left the hospital otherwise.

  • Hi there Pink Ellie

    At the hospital you have met people who have an understanding of people and can show emphathy. Most people are good and decent. All of them mean well but do not know how to show it and say things that are not appropriate in the situation.

    We have friends from the Himalayas they gave my husband good advice and his asthma.

    Before breakfast take a bit of ginger root and chew it, if is too strong, put a little honey on, try it. As far as I know is it neurology that takes care of RLS. Now the time is 20:00 GMT.

    And my RSL is starting .

    Good luck

    Kolla

  • This is very rare but very good. I found out what seemed to help me best for my RLS when I was in hospital after surgery for suspected cancer. I was discharged with a wound infection and colapsed half way home. With that and the RLS I was driven to distraction being in bed. The wound infection was quite bad so they gave tramadol and oxycodone. It worked but it was discovered by accident that it helped my RLS. That is sometime ago. Now I am on oxycontin, tramadol, pregabalin and it looks like the tramadol will have to be raised. Baeing hospitalised or in a cast is everyone's nightmare. Hope you are OK now, including your RLS

  • why would they give you two lots of painkillers and no antibiotics for an infection??, both tramadol and oxycodone are painkillers, not antibiotics so cant see how they would cure an infection. and surely they would not send you home after they diagnose you with a wound infection from and op !!!,they wouldnt dare, they would be to scare of legal action .

  • the more i think about this the weirder it sounds, did you not complain,

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