RLS in my whole body

For everything and anything else not covered in the other RLS/WED sections.
Booboobare
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Joined: Mon Jul 18, 2016 9:56 pm

RLS in my whole body

Postby Booboobare » Mon Sep 26, 2016 10:43 am

I am new on this site not sure if I have the right page. Would like to know if anybody else gets RLS in their upper body and arms it is real bad to have. I need to move around a lot when it's in my legs and in my torso and arms going to have surgery on my foot so it's going to be a big challenge. What does one do when they have restless legs I clean house in the middle of the night and that is all that seems to help besides my medications.

Polar Bear
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Location: N. Ireland

Re: What Severe RLS is Like

Postby Polar Bear » Mon Sep 26, 2016 12:36 pm

Booboobare - I have symptoms in my arms as well as legs, and yes it isn't good. No amount of waving my arms about really helps and I end up having to get up and walk about. Sometimes wonder how walking about helps with arm symptoms rather than waving them like a maniac, but it does.

What do I do in the middle of the night? I read while walking about, read while leaning against a wall and walking in one place - that doesn't work just as well. I do a few chores, Also too often I've found myself finding something to eat - avoid that one if you can !!

When you have your foot surgery it's possible that whatever temporary pain relief (opiod ?) they provide will go some way to relieving your RLS symptoms.

Perhaps if we knew some of your RLS history, are you taking any medication? Also have you had your ferritin serum level checked. That's a biggie, and you probably need to request that blood test from your doctor. Don't listen if GP says you are not anaemic, this test is with regard to stored iron and what is reaching your brain. You need to know your level, a level of 20 is ok for some folk, those of us with RLS want it up near 100.
Betty
http://www.willis-ekbom.org/about-rls-wed/publications
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

Rustsmith
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Re: RLS in my whole body

Postby Rustsmith » Mon Sep 26, 2016 4:41 pm

Booboobare, I have had RLS in my arms and torso for the last eight years. Although I have found ways to move that help, the motions are inconvenient, to say the least. So, my "treatment" when my meds are not working 100% and it hits my upper body rather than just legs is to get into the shower and turn the water as hot as I can stand it. I found that letting the water hit the back of my neck and head as well as occasionally "rinsing" each arm provides enough relief for me to climb back into bed and fall asleep. But the one thing that I have noticed is that I have to stand in the shower for long enough that I suspect my core temperature is rising above my "normal". I only start to get real relief when my entire body begins to feel so hot that I would be sweating if I wasn't standing in the shower.
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.

ViewsAskew
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Joined: Thu Oct 28, 2004 6:37 am
Location: Chicago

Re: RLS in my whole body

Postby ViewsAskew » Mon Sep 26, 2016 5:42 pm

I rarely get them in my arms now that I am no longer augmented. Are you, by chance, taking any medications now for your RLS/WED? Specifically a dopamine agonist such as ropinerole or pramipexole?
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.

Booboobare
Posts: 2
Joined: Mon Jul 18, 2016 9:56 pm

Re: RLS in my whole body

Postby Booboobare » Mon Sep 26, 2016 6:02 pm

Thanks for all of your replies they have been a big help. The shower sounds like a good plan I am taking miapex for my restless legs. Yes I thought about the pain pills do help a lot I'm trying to stay off the pain pills but I guess that's not going to be an option after surgery. Glad to find such a good site. My doctor has mentioned that I was anemic and then I might have to see a specialist about my iron so that was an eye-opener I will talk to her about that next time I go.
Thanks again sincerely Brenda

Polar Bear
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Location: N. Ireland

Re: RLS in my whole body

Postby Polar Bear » Mon Sep 26, 2016 6:41 pm

It is possible to have a normal blood reading i.e. not be anaemic and still be low on ferritin.
If your doctor has already mentioned that you are anaemic I'd be seeking a ferritin test sooner rather than later so that it can be dealt with.
Betty
http://www.willis-ekbom.org/about-rls-wed/publications
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

ViewsAskew
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Joined: Thu Oct 28, 2004 6:37 am
Location: Chicago

Re: RLS in my whole body

Postby ViewsAskew » Mon Sep 26, 2016 7:39 pm

Very important, booboo - immediately call doctor and make appointment! Your anemia could definitely make it worse. Also, and even more important, read about augmentation - there is a lot here on this site about it. It is something that happens when taking pramipexole - called Mirapex here in the US. Your symptoms may be because of the medication and your doctor is going to need to help you resolve that.

Click on this link to find more about augmentation. viewtopic.php?f=5&t=6532&p=61601#p61601
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.

badnights
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Re: RLS in my whole body

Postby badnights » Tue Sep 27, 2016 10:01 am

Low ferritin in the blood - levels below about 75 - have been linked to increased severity of RLS/WED, and also to increased risk of augmentation. Augmentation happens eventually to most people who take pramipexole, and it consists of a worsening of your symptoms, caused by the very medication that is supposed to help them. Many doctors simply prescribe more of the same medication, when the real solution is usually to get off the medication completely and try something else.

Getting off the medication involves yet more agony - the augmented symptoms get even worse during the withdrawal. But after that phase, which lasts for a few days to weeks after you stop taking the pramipexole, your symptoms settle down to a much more bearable state. You might even find that you no longer have symptoms in your arms. That the intensity is less, that they don't start up until later in the day.

So getting off the pramipexole is worth every little bit of agony involved. Especially considering that staying on it just worsens the problem. The link below my name, in every post I make, will lead you to a page where you can download a number of wonderful articles on augmentation and the importance of iron stores. It would be helpful for you to read some of these, at least skim through them even if you dont understand everything, and if possible, print copies to give to your doctor.

Regarding your surgery, I would recommend - my personal, non-medical opinion - if at all possible, delay the surgery til you are no longer anemic. The loss of blood during surgery can negatively impact your iron stores and make your WED/RLS go nuts. Also, substances put in the IV can make your RLS/WED go nuts, so it's ve yvery very important to inform everyone on the surgical team
- that you have a neurological disorder that is a movement disorder
- that it is worsened by certain medications administered by IV during surgery, so you MUST not be given any of those.
The RLS Foundation has made a pamphlet for patients who have WED/RLS and need surgery to give to each member of the surgical team. See http://willis-ekbom.org/member-portal/publications, scroll all the way down to the section called "Information for Healthcare Providers", to the very last one called Surgery and RLS. Download it and print at least 3 copies, and make sure before your surgery that the following people have a copy:
the anesthesiologist,
the surgeon,
the recovery nurse. Make sure a copy is in your chart, but also give these people a copy. The anesthesiologist is the most important one! talk to him or her about the information in the pamphlet, making sure he won't give you any of those substances that might set off the RLS, and making sure he knows that it will be dreadful for you if the RLS is set off, blood pressure might spike, and it might cause involuntary movements.

You should also get the pamphlet called called Surgery and RLS for the Patient
also perhaps Hospitalization Checklist for the Patient with RLS

We've just inundated you with lots of information, but you will find that it's your best weapon in fighting this disease. Good luck!
Beth - Wishing you all restful sleep tonight
WED/RLS AUGMENTATION:
viewtopic.php?f=5&t=6532&p=61601#p61601
Discussion Board Moderator's posts don't reflect the RLS Foundation's opinion & are not medical advice


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