OMG they've stopped my 3 morning dose it's now 2pm and I'm walking the ward they tried to do an ecg but the cables kept coming off because I couldn't keep still , relax relax they kept saying boy it's a good job I'm polite ! Couldn't do it in the end . Been trying to find a doctor or grab nurse in charge but to busy , offered me a paracetamol hah hah I could cry ! I'm gonna have to sign myself out
On phone to my wife virtually in tears if only they could understand
Ever seen a grown man cry
Smurff what hospital and department are you in? I have a good mind to give them a call.
Did you explain that you cannot stop taking DA’s like that, it has to be done gradually
Yes ! The information I obtained on here mentioned coming off slowly like heroin ! In fact I'd get more help if I was on heroin , tried umpteen times to get hold of nurse in charge , no joy until I went to nurses station and asked for a form to sign myself out , they soon came ? But trying to explain what its like and reducing meds was like talking to a brick wall THEY DO NOT UNDERSTAND , anyhow I told them I wanted to see a Dr, so still waiting , mind you been walking the walls , they came back to do another ECG, ( now we need a reading can you keep still this time ) I APOLOGISE TO ALL HEALTH STAFF AS THEY PUT UP WITH ENOUGH AS IT IS ! But that was the icing on the cake , NO I BLOODY CAN'T ! I'm talking to them as I'm rocking back n fore , you see this I said , this is what I have to put up with, I CANNOT HELP IT I CANNOT HELP IT ,please for goodness sake read up about it , what about a paracetamol, they asked ??? You couldn't make this up could you , still haven't heard off doctor , having to ring my daughter to bring a full Doset box in , ok I'll uses out of that but that's not the point , they will try n take box off me ( let em try ) if push comes to shove I will sign myself out , I know it s dangerous as I'm in with a fast heartbeat and breathlessness 128 per min n that's just sat down so what it goes up to when I'm RLS ING I judder to think , in fact I don't care ,
Smurff i just speechless how ignorant the hospital staff can be.And you right there probably would get more hep if you was on actual heroin.
I feel your pain and feel really helpless. And no you couldn’t make it up.
It’s quite distressing knowing what your going through, and you in a actual hospital.
Keep us posted. Nothing I can say will ease anything. Just stay strong.
Thank you
Smurff, I believe it’s only when your brain senses imbalance that it will release dopamine and quiet the RLS. So when you stand and walk your brain releases dopamine to balance you as you stand and coordinate movement as you walk. Though it’s terribly difficult, if you can manage to sit up on your knees while in bed (I’m sure the hospital staff will love that) that should relieve your RLS better than rocking. Sitting on the edge of your bed without using your hands and lifting one leg off the ground at a time may also help.
More than one person on here has reported a lessening of RLS symptoms after a few days in the hospital and despite no meds. In one case the person thought it may be due to the antibiotics they were given and in another case the person thought it was because they were on a clear liquid diet and eating practically nothing. So for whatever it’s worth, you may find that all this torture is resetting your receptors for the better if only it doesn’t fracture your personality in the process.
I personally would refuse to leave the hospital until you see the chief of neurology and they come up with a long term strategy for your RLS. This may include substituting some or all of the DA to buprenorphine or methadone. At the very least you should be transitioned to 3mg patches of Neupro or some such equivalent and never return to the Prami for the rest of your life. Once you’re home and on one of these other RLS drugs we on here will continue to torture you with other ideas for up-regulating your receptors.
The fun never ends.
Thank you so much so glad I found this site
Smurf get I touch with PALS Patient advice and liason service) Every hospital has one they liaise between you and the medical staff .Sometimes there phone number is at the entrance to the ward otherwise Google PALS for your hospital..They helped me alot when I was in hospital, had a meeting set up with Head nurse and Consultant within a couple of hours
Best sense of all. I've been thinking all day how to get an advocate service for Smurff.I hadn't realised there was already such in existence in UK.
Great idea.
I'm getting more incensed by the minute as I read this saga.
I rang then from my mobile from inside the toilet on the ward and within 2 hours all was resolved .Dreadful experience Smurf is going through
Best advice Pippins2 . Hope you have got in touch with them Smurff . Keep us posted
OMG that is awful, maybe criminal.......I wish you the best. For me, I'd checkout.
Sounds like torture. I don’t have any advice just lots of sympathy!
Omg, Smurf. I don’t live in the UK and have no real suggestions for obtaining help. I’m astonished that they are just ignoring your agony!!! My heart is breaking for you. Sending good vibes your way. Please keep us posted.
Stranger and stranger...Update from restlessstoz.
More failed medication attempts
My ways of coping, or not, with RLS
4th night in a row with no sleep!!!
My RLS symptoms are worse in the last month, will reducing ropinirole help the symptoms reduce?
