I'm a 66 year old guy , recently had surgery this is my experience, took my meds as normal in the morning Inc my pramipexol next dose due 8pm , taken into surgery 2pm , 2 hours later came round in recovery from anaesthetic still groggy , pipes n tubes from every orifice , only to have my legs suffering from the greatest urge ever to move , there's me trying to get up and off the bed which had the rails up , only to be told by nursing staff to just relax ! Just relax , I was desperate to move my legs and get off the bed it was torture and trying to explain to staff was impossible . Lie down , relax , you can't possibly get out of bed you've just had surgery they replied , OMG ! I HAVE TO , I HAVE TO ! I felt I was in a torture chamber no one was listening or understood , eventually after staff went I managed to work myself down to edge of bed and stand up , this after minutes from coming round from anaesthetic, I had a job to stand let alone move my legs , someone came round and put me back into bed but I made them put one side of bed rail down and Sat on edge of bed swinging my legs , it was frightening no one understood , was it something to do with the anaesthetic or what , but whatever, it was terrifying to me and possibly dangerous as being so groggy could have collapsed, but as you all know once those legs start that's it , please can medical staff understand what its like to have this dreaded syndrome, I'm not blaming anyone as staff were wonderfull but there is a percentage of people who have RLS and must have gone through this , my dad had this as well but I never knew the agony he must have gone through.
Terrifying hosp experience: I'm a 6... - Restless Legs Syn...
Terrifying hosp experience
When you have surgery they add in a anti nausea med they make RLS worse that’s what it sounds like had happened to you there is one anti nausea med that is RLS friendly called Zofran When having surgery ever again let them know you HAVE to have Zofran as your anti nausea med as all others will send your RLS crazy. So sorry you had to suffer with your RLS after surgery
Thank you very interesting , if only I'd known then
I completely understand! I have had similar experiences. Once in the hospital and once in dental office having surgery. For the dental surgery…second round, I took another tab of RLS med prior to the surgery and it worked out much better. People do not understand this dreadful problem we have!
Dear Smurff, I know exactly what you mean. I had a very similar experience. They said we are too busy we will get it for you later. LATER I said, you must be kidding .. I need it NOW! After trying desperately to explain and getting no where I actually pulled the tubes out and then took the IV stand for a walk down the corridor to where I had a locker with Pramipexol in it.
I think there must be a connection between RLS and the sedation one is given for the operation. Certainly it was a very strong burst of RLS. ..................................... Naturally, I got hell from the nursing staff but by that time I was too busy snorting pramexol to care.
It was not until recently that I realised the drugs used with general anaesthetic can aggravate RLS. Many years ago I had two knee replacements, with the first my RLS didn’t bother me at all and my symptoms didn’t occur until a few days after surgery, following the second operation my RLS kicked in soon after recovery . I have had a general anaesthetic in the last couple of months and I was fortunate enough to have an anaesthetist who is also a fellow sufferer who knew which drugs to use. Hopefully in time more and more professionals will become more aware of RLS.
I know exactly what you mean. My mother was admitted to hospital with a water infection which made her confused so she made no sense. I went to visit her to find a Hospital Care Assistant sitting either side of her bed 24 hrs a day because "she keeps trying to get out of bed" they told me. On further investigation I discovered that they had cancelled her RLS Meds (Ropinirole) as they didn't know what they were for.
I told them to reinstate them & she would be fine, but they refused - in the end I took some into her & administered them personally as they would not - bang! all normal again, well as far as RLS meds can be.
These health 'professionals' hadn't a clue.
I am worried if I need an Op what I'll be like as I am on Oxycodone & when I am supposed to be asleep, my brain still active & I feel awake. Let's hope the anesthetist can fix this ......
I am so sorry you had to endure this. My worst nightmare is what will happen if I need to go to hospital. I’m same age as you and in Australia.I walk around at home some nights from 8-midnight and can’t sit at all.
It’s so frustrating that nurses and some doctors aren’t more aware!
Do you have your rls under control at home with the pramipexole?
Oh no! If only you had known that most anti nausea meds aggravate RLS.It happened to me once.I asked for Zofran earlier this year and my legs were fine. God forbid you need more surgery.But if there is a next time you can avoid this.
So sorry to hear this. The anti emetic is to blame. Everyone with RLS should notify their GP surgery and their hospital that they have severe RLS and cannot tolerate sedating anti histamines and most anti nausea meds. I carry an alert sheet with me at all times because I'm terrified of what happened to you happening to me.If RLS were taught at medical school and during doctor training, this wouldn't happen.
Here's the list of bad meds and safe alternatives.
Thank you , didn't have a clue this was the cause
Sadly, nor do doctors. Every patient on DAs needs to notify their doctors about it because it's not taught at med schools or during anaesthesia/neurological/surgical training.GPs have no idea that raising serum ferritin helps the majority of RLS patients or that anti depressants trigger/worsen it. Sigh....
I had exactly the same experience, trying to get out of bed and almost fighting the nurses until they called the on-duty doctor who had never heard of RLS. I somehow got through the night and discharged myself first thing the next morning much against advice. But it was hell. I think we have to assume that none of the medical staff know about RLS and emphasise how excrutiating it is. I agree, it is absolute torture to be restrained and something I dread. I don't fly any more for the same reason, only travelling by train where I am free to walk up and down the carriages. Thank goodness everyone on this forum can sympathise and you know they have walked in your shoes!
I think ordinary people assume RLS is a slight aggravation of the legs and cannot understand all the fuss , but a normal attack is bad enough , but this attack , wow it was the mother of all attacks absolutely massive , and to be made to stay in one position it was like torture
I carry spare meds with me at all times, wherever I am. When travelling, I keep spares in my handbag, in a compartment in my purse, in my coat pocket - and if away from home over-night - a full day's dosage wrapped in tissue and pushed down into my bra. This may sound extreme, but once, long ago, I lost my luggage on a railway platform and all my meds were in the suitcase. As a result I had to abandon my trip and return home, starting again the next day (my suitcase was returnedtwo days later - it had been picked up by mistake).
My husband also carries spares in the car for me, just in case.
I guessed before going in for my surgery that there would likely be a problem so, giving all my meds in as required, I kept some back. Just as well, because the senior nurse disagreed that I needed another dose and said I must wait for the meds nurse to do her rounds. Well, b***** that! Since I'd just had a total knee replacement I wasn't about to succumb to the inevitable thrashing, stretching, cursing and screeching and trying to get out of bed, risking further injury, for the sake of a couple of tablets.
The message here is : BE PREPARED!!
Exactly first thing they do is confiscate your meds on admission , and lock them away in a cupboard , they say hospital policy, however my cousin who is a staff nurse informs me they have no right if you refuse , ok they will bring up patient safety etc but you are fully entitled to refuse ok they won't like it but you are fully entitled to refuse
When I had a gall bladder operation, I carried the respective Information leaflet with me. The nurses put it in my file and I told every doctor who came to my room about my Rls. Before the operation I talked to the anesthetist who told me he already knew and would be careful. And so it was. Maybe I was just lucky to deal with some knowing people. But same as Joolgs I habe always a information leaflet in my purse.
I was having my third child by epidural Caesarian section so I was on the bed and at one point I was trying to get off the bed with my legs they had a whole team of drs holding me on the bed they put me out for a while to calm me down .I remember how painful it was and still is .I recently slipped and seriously sprained my foot ,I have gone through nights of restless legs that I have been unable to walk (I usually walk for hours and hours at night when nothing help) to lie there moving my leg all night trapped so I understand how you feel I really do .I hope it never happens to you again .💕🥰
Wow that is awful, what a nightmare. I am so sorry you had to go through that. Noone understands this dreaded disease if they do not experience it themselves, not even the medical people, and they don't understand how horrible it is to not be able to get up and move your legs. They always think you're exaggerating. I have not experienced that with surgery yet, but if I am going into the hospital for any reason, I hide my RLS medication in my clothes because I have always had the fear of not being given it in time, and something like that happening. I don't care if they don't give me any of my other meds, but I can't go wo my roprinolol. This disease is just so exhausting and noone gets it. I hope you are feeling better at this time.
My worst was after knee replacement. When anaesthetic wore off, the nurse refused to give me my Methadone. The hospial didn;t carry it, it was my own bottle. My surgeon/specialist had given firm instructions to allow me to take as necessary. He even gave me his mobile to call 24/7 if problems. They refused to let me call him. I was crawling around the floor to get relief. That was the worst ever.
Join RLS.org and check out the Mayo Clinic protocol that they put together including information regarding meds that should not be administered to RLS sufferers. I had the same experience! It is such a poorly respected condition by medical professionals who are unfamiliar with the condition. I will talk with the patient representative ahead of time if I have to go under anesthesia as well as every physician who has anything to do with giving medications.
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