I had to have a colonoscopy recently and having had previous colonoscopies, I knew that my RLS legs were always a problem. I live in the USA and they use Propofol, which knocks me out but makes my Restless legs really bad.
So, I explained this to the Doctor and the anesthetic person. They said “It’s not going to be a problem.”
When I woke up my legs and arms felt like they had been in a boxing match, and hurt like crazy. The Doctor came to tell me the results. He said, “You have the worst case of Restless Legs Ever.” He had to laser off the polyps because they couldn’t keep me from moving. So no biopsy, no results.
I had warned them, and they still used Propofol.
Why won’t they listen to us?
RLS is a known medical condition here in the US. But obviously not understood !!
So sorry you had to go through that. I’m in the US, as well and after 20-years of RLS, I’ve yet to find a doctor that understands it. I’ve been on Ropinirole for about eight years, only to find out it interacts poorly with some of my other meds. You would think the prescribing physician would know about drug interactions. I’m starting Gabapentin now that my surgeon prescribed for my back. I have no refills and I know he won’t prescribe it for RLS. Going to a new GP this weeks with fingers crossed that she’ll give me a prescription. I’m going get spine surgery in two weeks and my biggest concern is this damn RLS. Can I lay still in bed on my back for recovery? I don’t think so, unless I knock myself out 🥴
Thanks for answering me and it sounds like you are having the same problems I have. My Primary Care doctor won’t prescribe any of the RLS drugs. I finally found a great neurologist who will prescribe for me. I’ve been on Pramipexole for years.
Sounds as though you are going through the same back issues that I am! I have spinal stenosis, with osteoporosis, and my spine collapsed on the spinal cord and have just had my Lumbar spine surgery a week ago. I was worried about my RLS too. I haven’t had any RLS or muscle spasms because they put me on OxyContin, large doses of Gabapentin and Valium. It’s working really well so far. But I know I will have to wean off as they won’t prescribe more than a week’s amount.
You don’t have to lie on your back, yes it hurts! They showed me how to lie on my side, with knees bent and ice packs on my back. Good luck with your surgery!
Hi again! That’s a coincidence that you just had lumbar surgery and I’m about to. Thanks for the heads up that you don’t have to lay on your back. When we’re you able to get up and start walking? I’m from NY, but retired to NC 10-years ago. Where are you located?
I was surprised, they had me walking around my room with a walker a few hours after surgery! PT came twice a day after that and walked with me. On discharge I was told to only walk to bathroom and kitchen with a walker for meals. Otherwise it’s no lifting, bending or twisting . It may be totally different for you as each surgeon has his own rules.
I have recently had major gastric surgery and the first night, the nurses thought I was having a seizure! They gave me Oxycotin and that certainly helped a lot. I wish you all the best and a speedy recovery.
• in reply to
Hi
I see that you've been prescribed both Oxycontin and Gabapentin which can both help help with RLD.
I can understand doctors reluctance to carry on prescribing Oxycontin for RLS, although some do. I can't understand why they can't carry on prescribing gabapentin for RLS Gabapentin is recommended for RLS.
I note also that your primary care doctir wouldn't prescribe medicatiobs recommended for RLS, which is ridiculous.
If you're still taking the pramipexole your neurologist prescribed, I suggest you read up about augmentation. (e.g. the pinned posts on this site) Any problems you may currently be having with RLS may be related to this and it will be due to pramipexole.
In which case it would be better to switch to gabapentin and/or oxycontin.
This is the list of meds that should not be given to RLS patients undergoing surgery. There is also a recommendation that morphine should be given during the op to prevent the kicking /movement that is inevitable. This list is available to members of the US RLS Foundation and they have extensive leaflets for professionals. It costs about $35 for a year's membership and it is well worth it if you can afford it. There are regular magazines with the latest news and research, webinars with top US RLS experts talking on relevant issues and a forum. It's not as good as our forum ( I'm British so obviously biased). This is what the leaflet for surgeons says about meds to avoid during surgery.
TABLE 3. SUBSTANCES THAT SHOULD
NOT BE GIVEN TO RLS PATIENTS
• Neuroleptic agents (butyrophenones, including
droperidol; phenothiazines)29
• Tricyclic, tetracyclic, or selective serotonin reuptake
inhibiting antidepressants (except as part of current
therapeutic regimen)
• Opioid antagonists (naloxone, naltrexone)
• Antiemetic agents with dopamine antagonist
properties (metoclopramide HCl, prochlorperazine,
promethazine HCl (Phenergan))30
• Antihistamines that cross the blood-brain barrier
(Benadryl in particular)
Hope this is useful and that you will be able to show the list to your medical team and direct them to the RLS foundation in the US. This is the link to the site but you may not see it if you are not a member.
This is great info, Joolsg. I’m going to print it out and give it to my surgeon. It is true than in the US it is very hard to find a doctor that understands RLS, not to mention getting a prescription for an opiate is impossible. When I read some of the posts here I am amazed to see the meds that are prescribed. It’s very different here. Thanks so much for the info!
Actually, the US has the best RLS doctors in the world. If you live near one of the RLS care centres you will definitely find a doctor who will prescribe low dose opioids. Methadone is the preferred drug of Dr Winkleman ( Boston) and Dr Ondo ( Texas). Johns Hopkins Hospital in Baltimore has great RLS doctors and Dr Buchfuhrer is in Redwood California.
Here in the UK we have to fight to get low dose opioids and the only way I managed to get them was by giving my MS neurologist all the research papers on low dose opioids and asking her to write to my GP. GPs mostly refuse them.
Methadone is an absolute no no. Yet it's cheap, well researched, effective and has the least risk of a "high" and therefore addiction.
Like all countries, however, most GPs and neurologists know absolutely nothing about it because it isn't taught at med School.
Until we all demonstrate in huge numbers, our legislature and medical profession will keep ignoring us. I know the US RLS foundation demonstrated in Washington last year and met with representatives, but not many people turned up.
We need to all be more vocal and visible to stop the medical profession treating us like we have an insignificant, minor ailment.
The name doesn't help and I know there have been many debates about this over the decades. The acronym WED for Willis Ekbom Disease has been trademarked for wedding magazines apparently and any search on computers for WED will take people straight to wedding articles- not very effective.
All good information. To add to this, many of us are now older with multiple ailments who don’t live near these cities. Most likely, many of us are on social security and don’t have the money or the means to travel across the country. In addition, RLS progresses with age. Twenty years ago, my RLS was very minor and not a problem. I’m guessing it wasn’t even recognized at the time. If I knew then what I know now I would definitely have been in Washington marching with the RLS foundation.
I’m very grateful for all the work that is currently being done in support of this debilitating disease. Hopefully, future generations will be able to walk into the doctors office and get treatment, just as they would for the flu.
As always, thank you for providing valuable information 💕
This is probably old news to many of us but low iron levels can contribute to RLS. The thing to remember is that your hemoglobin levels can be normal and yet you can be suffering from low iron levels. A ferritin test will provide the answer. My daughter was suffering from RLS. Her hemoglobin was at 11.0, just below normal but her ferritin level was 2, well below normal. She is now on a high dose of iron and her RLS symptoms have improved immensely.
I have had 3 colonoscopy procedures - all without anesthesia - it's uncomfortable, but not especially painful. Different doctors are better skilled with that scope.
Thanks for all the information and answers. Here in the US opiates and benzodiazepines have been tightly regulated by the government and other than after surgeries you cannot be prescribed them. The doctors are terrified of losing their licenses. The opioid crisis has caused any chronic pain patient to lose their pain meds or be put on a very low dose.
I would have to go to a pain clinic, which are far and few, and even then probably wouldn’t be prescribed opiates. It’s amazing how different things are in each country! I used to live in the UK for years too, and worked in the medical field for 19 years there.
I’m lucky that my neurologist will prescribe some meds. I normally take Tramadol or Ultram, and Klonopin.
No I didn’t ask why they didn’t listen to me, Most doctors would not appreciate the question, too afraid of being sued.
I live in the UK and take Pramipexole and I have to keep increasing the dosage but doctors just don’t seem to understand what we go through . Have tried others but nothing works really, I think many think it’s a joke but we all know it certainly isn’t
I have never thought to mention my RLS when I have had a colonoscopy and I have had many. I try though to have my colonoscopy first thing in the morning when my RLS is not as active.
Please don't put off a colonoscopy. The preparation is the worst. The procedure is easy. In most cases they give you something so that you are barely awake. On two of my colonoscopies they actually asked me what kind of music I liked, so I could listen to it during the process. I went country. On my first one, they found three pre-cancerous polyps. I am sure I would have had cancer by now if I had not had them removed. You never want to look back and say, "if only".
Pardon me for saying this -at the risk of putting the mockers on it -thankfully ive never been called for one -Knowing my luck saying that -I'll probably get called for one
Sara, i dont know your age, but women when they get to a certain age, cant remember the age, you get sent through the post a kit for you to take a sample of your stool to send to be examined. if they find anything wrong, then you will be sent to have a appointment for a colonoscopy.
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Oxycodone/Naloxone
Help in Oklahoma
Anyone here with RLS in arms-torso and mouth? Please reply!
Fidgety Female
