RLS only in feet?

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emily
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RLS only in feet?

Postby emily » Fri Jul 28, 2017 5:44 pm

Hi,

I have been tentatively diagnosed with RLS and being referred to a neurologist. I have had the classic symptoms of RLS for about 5 months, but only in my feet. They are very hot, tingling and sometimes painful. Symptoms worsen when at rest and especially at night making sleep difficult. Moving my feet around make the symptoms go away for about a min and then they return. So far my legs are not affected. Can RLS start in the feet and then move up to the legs? Iron and hemaglobin levels have been checked and are normal.

stjohnh
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Re: RLS only in feet?

Postby stjohnh » Fri Jul 28, 2017 6:47 pm

Hi Emily, welcome to the restless legs bulletin board. You will find lots of helpful information and sympathetic folks here. Most people that do not have restless leg syndrome have a hard time understanding how difficult this disease is to deal with, hopefully yours is mild and will stay fairly mild. It sounds like you probably have restless leg syndrome, however it is not really classic. Classic restless leg syndrome is not painful. The fact that your symptoms are in your feet only, rather than your legs, is not particularly unusual for restless leg syndrome.

One of the most important things you can do is to get your ferritin checked. This is a test that measures the amount of iron in your body. People with restless leg syndrome need much more iron than most people and this is reflected in the need to have a ferritin of at least 75, preferably 100. This is much higher than the usual normal that doctors quote, frequently 20. When you see your new doctor be sure that you get your ferritin checked and find out what the actual number is.
Blessings,
Holland

ViewsAskew
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Re: RLS only in feet?

Postby ViewsAskew » Fri Jul 28, 2017 7:09 pm

Hi emily - sure can be only in the feet as Holland noted. So can peripheral neuropathy, which can easily be confused with RLS. We have had a few people here diagnosed with RLS initially, only to find out they had neuropathy. Not saying it is that! Just that a diagnosis of RLS is not always straight forward.

As Holland suggested, the serum ferritin test is very important and you must get the actual value, not, "Your results are fine."
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.

emily
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Joined: Fri Jul 28, 2017 4:55 pm

Re: RLS only in feet?

Postby emily » Fri Jul 28, 2017 8:47 pm

Thank-you for this information. I did not have ferritin checked, but these were my results: iron is low normal....

Iron: 16 umol/L (normal 11-34)

Iron Binding Capacity Unsaturated: 42 umol/L (normal 24-61)

Iron Saturation: 0.28 (normal 0.13-0.50)

stjohnh
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Location: Palo Alto, California

Re: RLS only in feet?

Postby stjohnh » Fri Jul 28, 2017 10:52 pm

Emily, these tests give some information about your iron status, but ferritin tells you how much is your total body iron. Ask to have your ferritin checked.
Blessings,
Holland

Polar Bear
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Re: RLS only in feet?

Postby Polar Bear » Sat Jul 29, 2017 11:24 am

Yes, Yes, Yes, It's the Ferritin test that is important.
Ferritin isn’t the same thing as iron in your body. Instead, ferritin is a protein that stores iron, releasing it when your body needs it.
Betty
http://www.willis-ekbom.org/about-rls-wed/publications
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badnights
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Re: RLS only in feet?

Postby badnights » Wed Aug 02, 2017 4:12 am

Do all of the symptoms go away - the hotness, the tingling, the pain - when you move your feet around, or only some of them?
Do you feel an urge to move the feet, separate from the fact that moving them reduces the symptoms?
When you say symptoms are worse at night, is that because you spend longer lying down at night, or do you feel it would be worse anyway? Can you lie down for an hour or two in the daytime without getting symptoms?

Hot is not typical WED/RLS, though tingling could be, & pain could be. Starting in the feet is not unheard of but is unusual for RLS/WED. The tentative diagnosis is probably based in large part on two factors: the fact that rest brings the symptoms on and movement relieves the symptoms at least as long as it is ongoing, and the fact that your symptoms are worse at night. However, the actual symptoms are somewhat atypical. You might have a neuropathy in addition to or instead of RLS/WED, especially if only some of the symptoms go away with movement, and if you don't feel an urge to move. Also, if lying still in the daytime brings on the same degree of symptoms, that might mean there is something going on other than - or in addition to - WED/RLS.

The neurologist should cover things like this. He/she may or may not, depending on his/her level of experience with RLS/WED.
Beth - Wishing you all restful sleep tonight
WED/RLS AUGMENTATION:
viewtopic.php?f=5&t=6532&p=61601#p61601
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fuz_mind
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Re: RLS only in feet?

Postby fuz_mind » Fri Aug 11, 2017 3:43 am

Polar Bear wrote:Yes, Yes, Yes, It's the Ferritin test that is important.
Ferritin isn’t the same thing as iron in your body. Instead, ferritin is a protein that stores iron, releasing it when your body needs it.


can I check if any one (or your doctors) uses more than just ferritin as a guide? I was watching the video by Prof Earley and he uses all 4 to determine one's iron status (fasting serum, ferritin, TIBC and % iron saturation).....

Rustsmith
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Re: RLS only in feet?

Postby Rustsmith » Fri Aug 11, 2017 11:43 am

When I was a patient of Dr Ondo in Houston he ordered blood tests that included all four of the tests that are mentioned in Dr Earley's video. I never saw the results of that set of tests, but at my next appointment Dr Ondo mentioned that my results were fine. I know that my ferritin levels had risen into the 300 levels at that time, so I didn't pursue the topic any further. At that time I was seriously into augmentation from DAs, so I am part of the group of RLS patients for whom increased serum iron levels do not help relieve my symptoms. My ferritin levels remain over 300 and I still experience times where my RLS is barely managed even though I am now on an opioid for my RLS and am no longer troubled with augmentation.
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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Re: RLS only in feet?

Postby ViewsAskew » Fri Aug 11, 2017 5:07 pm

fuz_mind wrote:
Polar Bear wrote:Yes, Yes, Yes, It's the Ferritin test that is important.
Ferritin isn’t the same thing as iron in your body. Instead, ferritin is a protein that stores iron, releasing it when your body needs it.


can I check if any one (or your doctors) uses more than just ferritin as a guide? I was watching the video by Prof Earley and he uses all 4 to determine one's iron status (fasting serum, ferritin, TIBC and % iron saturation).....


Dr B checked all four, too. Here is a quote that might help: "All patients with symptoms of restless legs syndrome (RLS) should be tested for iron deficiency. [3, 4] At a minimum, a ferritin level should be obtained. A complete iron panel, including iron levels, ferritin, transferrin saturation, and total iron binding capacity, is preferable because the ferritin level can be falsely elevated in acute inflammatory states." From http://emedicine.medscape.com/article/1188327-workup
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.

fuz_mind
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Joined: Sun Apr 23, 2017 4:27 pm

Re: RLS only in feet?

Postby fuz_mind » Sat Aug 12, 2017 9:53 am

Dr B checked all four, too. Here is a quote that might help: "All patients with symptoms of restless legs syndrome (RLS) should be tested for iron deficiency. [3, 4] At a minimum, a ferritin level should be obtained. A complete iron panel, including iron levels, ferritin, transferrin saturation, and total iron binding capacity, is preferable because the ferritin level can be falsely elevated in acute inflammatory states." From http://emedicine.medscape.com/article/1188327-workup[/quote]

thanks views! do you know if there Dr B uses any guide to the 4 indices? In his book, he mentioned % iron saturation at < 20%; i know general guide for ferritin > 100. what about the TIBC or serum iron? or are these 2 less important?

stjohnh
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Re: RLS only in feet?

Postby stjohnh » Sat Aug 12, 2017 2:19 pm

The ferritin is the primary test. The other 4 are used only to rule out a falsely elevated ferritin. In other words, if your ferritin is already low, the other tests don't add anything at all. If your ferritin is over a hundred or so, and you have some other problem causing an acute phase reaction, the other three tests can help make sure that the ferritin level is truly okay as opposed to falsely elevated.
Blessings,
Holland

badnights
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Re: RLS only in feet?

Postby badnights » Sun Aug 13, 2017 4:11 am

emily? are you still out there?
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

fuz_mind
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Re: RLS only in feet?

Postby fuz_mind » Thu Aug 17, 2017 4:47 pm

Rustsmith wrote:When I was a patient of Dr Ondo in Houston he ordered blood tests that included all four of the tests that are mentioned in Dr Earley's video. I never saw the results of that set of tests, but at my next appointment Dr Ondo mentioned that my results were fine. I know that my ferritin levels had risen into the 300 levels at that time, so I didn't pursue the topic any further. At that time I was seriously into augmentation from DAs, so I am part of the group of RLS patients for whom increased serum iron levels do not help relieve my symptoms. My ferritin levels remain over 300 and I still experience times where my RLS is barely managed even though I am now on an opioid for my RLS and am no longer troubled with augmentation.


oh steve! i totally missed your message. thanks for sharing your experience!

im in a dilemna abt my iron levels but will post it in a different thread.....


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