My RLS nightmare after surgery

For everything and anything else not covered in the other WED/RLS sections.
sanibelsusan19
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Joined: Wed Apr 29, 2015 3:35 pm
Location: Hawaii

My RLS nightmare after surgery

Postby sanibelsusan19 » Wed May 06, 2015 12:18 am

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

Yankiwi
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Joined: Wed Sep 10, 2014 7:20 am
Location: West Coast, South Island, New Zealand

Re: My RLS nightmare after surgery

Postby Yankiwi » Wed May 06, 2015 1:37 am

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.

ViewsAskew
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Location: Los Angeles

Re: My RLS nightmare after surgery

Postby ViewsAskew » Wed May 06, 2015 7:40 am

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.
Ann - Take what you need, leave the rest

Managing Your RLS

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

sanibelsusan19
Posts: 2
Joined: Wed Apr 29, 2015 3:35 pm
Location: Hawaii

Re: My RLS nightmare after surgery

Postby sanibelsusan19 » Wed May 06, 2015 2:18 pm

Thank you for the replies, and knowing I am NOT alone!!!
Sue

suttmes69xx
Posts: 16
Joined: Thu Mar 16, 2017 8:23 pm

Re: My RLS nightmare after surgery

Postby suttmes69xx » Fri Aug 02, 2019 10:24 pm

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?
Shelly

ViewsAskew
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Re: My RLS nightmare after surgery

Postby ViewsAskew » Tue Aug 06, 2019 6:51 am

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.
Ann - Take what you need, leave the rest



Managing Your RLS



Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

Rustsmith
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Location: Pueblo, Colorado

Re: My RLS nightmare after surgery

Postby Rustsmith » Tue Aug 06, 2019 1:41 pm

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.
Steve

Augmentation Evaluation http://bb.rls.org/viewtopic.php?f=4&t=9005

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

suttmes69xx
Posts: 16
Joined: Thu Mar 16, 2017 8:23 pm

Re: My RLS nightmare after surgery

Postby suttmes69xx » Tue Aug 06, 2019 6:19 pm

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 ..

Rustsmith
Moderator
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Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Re: My RLS nightmare after surgery

Postby Rustsmith » Tue Aug 06, 2019 7:28 pm

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.
Steve

Augmentation Evaluation http://bb.rls.org/viewtopic.php?f=4&t=9005

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

suttmes69xx
Posts: 16
Joined: Thu Mar 16, 2017 8:23 pm

Re: My RLS nightmare after surgery

Postby suttmes69xx » Tue Aug 06, 2019 10:12 pm

Thanks Steve
Shelly


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