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My RLS nightmare after surgery

Posted: Wed May 06, 2015 12:18 am
by sanibelsusan19
Aloha,
I wanted to share my experience of what happened after my surgery in hopes that it may help others. I had a Hysterectomy, and after I asked them to give me my Requip. I don't know if I didn't keep it down, or didn't get it, but my legs started jumping, and would not stop for hours. I couldn't sleep and couldn't get any new medicine until the next time it was due. This was a nightmare that I would not wish on anyone. I would like to hear if anyone else has had this happen? Please be prepared if you have surgery that you get your RLS meds.
Sue

Re: My RLS nightmare after surgery

Posted: Wed May 06, 2015 1:37 am
by Yankiwi
I'm so sorry that happened to you. It's important that anyone having surgery impresses on the staff that they need their medication, without it it's hell. Also, tell the anesthesiologist that you could be sensitive to some anesthetics.
Years before I had any symptoms of RLS I had surgery. Something went wrong with the amount of anesthesia (but was rectified as the doctor was on the ball) and then when I was in the recovery room I couldn't lie still, especially my legs and the nurse berated me. The foundation has information on preparing for surgery.

Re: My RLS nightmare after surgery

Posted: Wed May 06, 2015 7:40 am
by ViewsAskew
That is such a horrible thing to happen - and when you likely couldn't get up at all!!!! Sometimes the pain meds can stop symptoms - too bad they didn't for you. Or maybe they reduced them some - if so, that was likely fortunate.

We don't hear of it happening too often, but you are not the first person to have had trouble. I think I went over it with my doctor about five times, including before the day of surgery. They had things underlined and highlighted (long ago for knee surgery). There are also medications that they should avoid giving us - they often give an antihistamine with the anesthesia - this can make many of us go crazy.

The Foundation has information about how to work with your doctors if you have surgery - what you cannot take, what you need. I think it's available only to Foundation members - along with many other articles and helpful documents you can use with your doctors.

I'm so sorry that happened to you - thank you for reminding us as it's something we should all think about and work with our doctors to make SURE they do not forget.

Re: My RLS nightmare after surgery

Posted: Wed May 06, 2015 2:18 pm
by sanibelsusan19
Thank you for the replies, and knowing I am NOT alone!!!
Sue

Re: My RLS nightmare after surgery

Posted: Fri Aug 02, 2019 10:24 pm
by suttmes69xx
I thought that I had my RLS under control. After taking oral iron for some time to raise my Ferritin level, my RLS was much better. That is until I recently went into the hospital for an endoscopy procedure. I was not allowed to take my PD medications before the procedure. When I woke up, my RLs was so severe and all over my body that I thought I would go crazy. I just wanted to crawl out of my skin. Brutal! Does anyone know if there is a type of anesthesia that doesn't exacerbate RLS?

Re: My RLS nightmare after surgery

Posted: Tue Aug 06, 2019 6:51 am
by ViewsAskew
suttmes69xx wrote:I thought that I had my RLS under control. After taking oral iron for some time to raise my Ferritin level, my RLS was much better. That is until I recently went into the hospital for an endoscopy procedure. I was not allowed to take my PD medications before the procedure. When I woke up, my RLs was so severe and all over my body that I thought I would go crazy. I just wanted to crawl out of my skin. Brutal! Does anyone know if there is a type of anesthesia that doesn't exacerbate RLS?


It likely is not related to the anesthesia, but that they often also give people dipenhydramine at the same time. That makes almost all of us crazy with RLS. If you are a member of the RLS Foundation, or if you join, they have a pamphlet you can take with you to your surgeon and it explains what they should (and should not) do. If your finances allow it, this is one of the many wonderful printed options that the Foundation offers that help us.

Re: My RLS nightmare after surgery

Posted: Tue Aug 06, 2019 1:41 pm
by Rustsmith
I had surgery on my hand about two years ago. I took the pamphlet that Ann mentions with me and when the anesthesiologist came in, I gave it to him and told him about my RLS. He read through it, said that he had not been planning to use any of the meds that were listed as causing problems and then asked to keep it. I immediately agreed so that he could avoid causing problems for anyone else.

Re: My RLS nightmare after surgery

Posted: Tue Aug 06, 2019 6:19 pm
by suttmes69xx
Thanks. I am a member of RLS Foundation. Is the pamphlet you are talking about Surgery and RLS? I didn't see where it specifically mentioned dipenhydramine ..

Re: My RLS nightmare after surgery

Posted: Tue Aug 06, 2019 7:28 pm
by Rustsmith
Diphenhydramine appears in the blue box on the second page in the list of substances to avoid. It also appears on their RLS Medic Alert card since it is probably the number one common problem when it comes RLS medication triggers.

Re: My RLS nightmare after surgery

Posted: Tue Aug 06, 2019 10:12 pm
by suttmes69xx
Thanks Steve

Re: My RLS nightmare after surgery

Posted: Thu Aug 22, 2019 4:21 am
by leggo_my_legs
I've had that reaction to anesthesia before. It's miserable.

Re: My RLS nightmare after surgery

Posted: Thu Aug 22, 2019 7:02 pm
by suttmes69xx
According to my doctor the anesthesia used was Propofol. I don't understand why that would cause my RLS to go crazy!!