Newly Diagnosed

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Shar64
Posts: 3
Joined: Mon Oct 10, 2016 4:49 pm

Newly Diagnosed

Postby Shar64 » Mon Oct 10, 2016 6:02 pm

Hello, my name is Sharon and I am 52 years young.
I am happy to be on your board and wonder if you can all help me figure out if my symptoms are typical of RLS or not. I am overweight, and not very active. When I was reading about RLS, I saw often, "a need to move your legs", "can't stay in bed", "sleeplessness..." I couldn't believe that this description could possibly relate to the amount of pain my legs were going through at night. Not once, did I see a description, that said you have leg or foot (or both) cramps (for lack of a better word), that are so severe you "CAN'T" sit still and must get up and move in order to try to find any possible way to twist or turn your leg or foot to make the pain recede even just a little. Does this sound like what some of you go through? When my doctor initially mentioned RLS, I told her no that couldn't possibly be it because of what i had read, so I went back and read more and applied it to what I was experiencing and it made sense. I am used to pain, I have severe arthritis in my knees (no cartilage left), but the pain I am used to, I can suffer through and deal with. The pain in my legs at night has brought me to tears (very unlike me), and I am willing to try anything. I'm taking Iron, trying to drink more water and cut out caffeine, and I just started drinking tonic water for the Quinine. My doctor also has me taking a dose of Requip at bedtime and I have been doing this for about 2 weeks and so far, it hasn't helped much. I see other things online, but would love to hear from you. When I wake with this pain, it is usually in one leg, beneath my calf, and sometimes all the way down to my big toe. I can't straighten or move my leg certain ways without sending shooting pains through my leg. Sometimes I can find a way to bend my foot that will make the pain recede a bit, but most of the time I need to walk and pray that it stops soon. If I try to straighten my toes, it won't work. Sometimes the onset is when I wake up and stretch and it will kick in before I realize I am stretching... a big scream-worthy ...OUCH. I would love to hear suggestions, but more than that, I am wondering if some of you can describe what you go through with your legs if they are similar to my description or not. So sorry for the "long" post. I promise I will get less "wordy" in the future. Thanks very much in advance for your help!

ViewsAskew
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Posts: 14894
Joined: Thu Oct 28, 2004 6:37 am
Location: Chicago

Re: Newly Diagnosed

Postby ViewsAskew » Mon Oct 10, 2016 8:05 pm

I wish I could help more, Sharon. Some of us experience RLS as a painful thing and some of us do not. I do not.

Regardless of the pain, I think those with RLS have the following in common.

When we relax - such as to read a book or watch TV or snuggle with a pet (or person) - we find that there is an urge to move that is accompanied by an uncomfortable sensation. This urge is SO strong that we MUST move. We don't move so much from the sensation (although it is part of it) but because we simply MUST move.

When we move - walk, exercise, shake our legs, etc - both the urge and the sensation stop and we're OK again.

The urges and sensations are the strongest in the evening and early morning - so around 8 PM to 3 AM. Sometimes we only have them for a few minutes, other times it is for hours. And, sometimes it happens in the daytime. If I were to try to take a nap at 2 PM, for example, I'd get both the urge and the sensations.

When you mentioned the waking and stretching - that reminded me a LOT of leg cramps. I used to get those and they were very painful. Have you done any reading about them - here is a link http://www.webmd.com/sleep-disorders/tc ... overview#1 .
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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Re: Newly Diagnosed

Postby Rustsmith » Mon Oct 10, 2016 8:16 pm

Sharon, welcome to our discussion board.

First, it doesn't take very long reading various posts by our members to realize that we all experience variations on the theme around RLS. Some experience unusual feelings like insects on the skin (creepy crawlies), some describe cramp like feelings that are sort of akin to what you have described and some of us only have a sensation that can only be described as an overwhelming need to move.

Unfortunately, there is no test that a doctor can run to diagnose RLS. The diagnosis is done by determining the answers to a series of questions. A short form of these questions, the first 4 must all be answered by Yes are:
1. Is there an urge to move which is usually accompanied by an uncomfortable or unpleasant sensation?
2. Does this urge to move begin or worsen during periods of rest, such as lying down or sitting?
3. Is the urge and any accompanying discomfort relieved by moving around, such as walking or stretching?
4. Does all of this get worse during the evening or at night?
5. Is there any other condition that would explain these features? (obviously the answer here must be No).

Did your doctor perform a blood test to determine your ferritin level? Ferritin is often an indicator of iron problems. Normal for most people is anything over 20. For RLS patients the number should be over 50 to 70 (better over 100). If you are taking a dopamine agonist (like Requip), then the number should definitely be over 100. Unfortunately, it takes a number of weeks for iron pills to raise your ferritin if it is low. Also keep in mind that the iron pills are most effective if you take them with Vitamin C (at least 400mg) and take both of these on an empty stomach. This can cause stomach upset, but it helps the body adsorb the iron.

Finally, your description of your "cramps" describes an RLS symptom that hits me occasionally. For me, stretching used to work but is becoming less effective. These days, I usually hobble into the bathroom and fill the tub with water that is as hot as I can stand (which is quite hot!). I soak my legs for about 10 minutes. This relieves the cramping and allows me to get back into bed so that I can fall asleep before the RLS has a chance to hit again.
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.

Shar64
Posts: 3
Joined: Mon Oct 10, 2016 4:49 pm

Re: Newly Diagnosed

Postby Shar64 » Mon Oct 10, 2016 9:42 pm

ViewsAskew wrote:I wish I could help more, Sharon. Some of us experience RLS as a painful thing and some of us do not. I do not.

Regardless of the pain, I think those with RLS have the following in common.

When we relax - such as to read a book or watch TV or snuggle with a pet (or person) - we find that there is an urge to move that is accompanied by an uncomfortable sensation. This urge is SO strong that we MUST move. We don't move so much from the sensation (although it is part of it) but because we simply MUST move.

When we move - walk, exercise, shake our legs, etc - both the urge and the sensation stop and we're OK again.

The urges and sensations are the strongest in the evening and early morning - so around 8 PM to 3 AM. Sometimes we only have them for a few minutes, other times it is for hours. And, sometimes it happens in the daytime. If I were to try to take a nap at 2 PM, for example, I'd get both the urge and the sensations.

When you mentioned the waking and stretching - that reminded me a LOT of leg cramps. I used to get those and they were very painful. Have you done any reading about them - here is a link http://www.webmd.com/sleep-disorders/tc ... overview#1
.
Thank you so much Ann. I am looking for information. I was thinking leg cramps as well, but the urge to move my legs was so intense this is what my doctor thought, but the pain is so intense that I am open for suggestions that will help. Again, thanks for taking the time!! With much appreciation and a supportive RLS Hug..thanks again!

Shar64
Posts: 3
Joined: Mon Oct 10, 2016 4:49 pm

Re: Newly Diagnosed

Postby Shar64 » Mon Oct 10, 2016 9:51 pm

Rustsmith wrote:Sharon, welcome to our discussion board.

First, it doesn't take very long reading various posts by our members to realize that we all experience variations on the theme around RLS. Some experience unusual feelings like insects on the skin (creepy crawlies), some describe cramp like feelings that are sort of akin to what you have described and some of us only have a sensation that can only be described as an overwhelming need to move.

Unfortunately, there is no test that a doctor can run to diagnose RLS. The diagnosis is done by determining the answers to a series of questions. A short form of these questions, the first 4 must all be answered by Yes are:
1. Is there an urge to move which is usually accompanied by an uncomfortable or unpleasant sensation?
2. Does this urge to move begin or worsen during periods of rest, such as lying down or sitting?
3. Is the urge and any accompanying discomfort relieved by moving around, such as walking or stretching?
4. Does all of this get worse during the evening or at night?
5. Is there any other condition that would explain these features? (obviously the answer here must be No).

Did your doctor perform a blood test to determine your ferritin level? Ferritin is often an indicator of iron problems. Normal for most people is anything over 20. For RLS patients the number should be over 50 to 70 (better over 100). If you are taking a dopamine agonist (like Requip), then the number should definitely be over 100. Unfortunately, it takes a number of weeks for iron pills to raise your ferritin if it is low. Also keep in mind that the iron pills are most effective if you take them with Vitamin C (at least 400mg) and take both of these on an empty stomach. This can cause stomach upset, but it helps the body adsorb the iron.

Finally, your description of your "cramps" describes an RLS symptom that hits me occasionally. For me, stretching used to work but is becoming less effective. These days, I usually hobble into the bathroom and fill the tub with water that is as hot as I can stand (which is quite hot!). I soak my legs for about 10 minutes. This relieves the cramping and allows me to get back into bed so that I can fall asleep before the RLS has a chance to hit again.


Thanks Steve. Very much. My 1-5 questions are all answered in a way that would confirm the RLS diagnosis. 1-Yes (although unpleasant sensation is putting it very mildly :)). 2-It is always when I am resting and sometimes when I have my feet up in the recliner, but almost always in bed at night; 3-If I get up and move my legs around, sometimes I can alleviate the pain by adjusting my legs or stretching them into certain positions (although stretching while I am lying down, can sometimes bring on the event); 4-Almost always at night, although today I had one hit me after an especailly bad night last night with 3 separate, jump out of bed events; 5-the only other explanation could be cramps, but so many of the other things, only at night and the need to move, point more closely towards RLS.
Again, I appreciate your input more than you can know. Because I didn't see a lot of severe pain when researching RLS, I wanted to figure out if anything else might be an option or if others have the intense cramping pain as a result of RLS, I just didn't know. My doctor is increasing my dosage of the Requip, so hopefully that will help, but from what I read, that sometimes help, but doesn't truly make it go away. I'm also going to increase the iron and vitamin D which my doctor also suggested. Again...thanks!

ViewsAskew
Moderator
Posts: 14894
Joined: Thu Oct 28, 2004 6:37 am
Location: Chicago

Re: Newly Diagnosed

Postby ViewsAskew » Tue Oct 11, 2016 12:33 am

Some of the RLS specialists believe that you can use a dopamine agonist - such as ropinerole - to test whether or not it is RLS. They believe that everyone responds to this class of drugs. You may not take them because of side effects, for example, but if you could take them, they would work.

How much ropinerole are you taking and when are you taking it? It takes about 60-90 minutes to work, so you need to take it early enough. And, it only works for about 4 hours.
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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Posts: 4569
Joined: Tue Mar 10, 2009 4:20 pm
Location: Northwest Territories, Canada

Re: Newly Diagnosed

Postby badnights » Sat Oct 15, 2016 9:08 am

Hi
Cramps are not WED/RLS, but often accompany it. Quinine can help with cramps but not with WED/RLS. If you have both nocturnal leg cramps and RLS/WED, it can be hard to differentiate which symptoms belong to which disorder, but as you gain clearer knowledge of both disorders, you will be able to.

The fact the Requip did not seem to help at all means either you don't have RLS/WED, or you didn't notice the beneficial effect on the WED through the severe cramping. Requip will always have an initial positive effect on RLS/WED, and some doctors use it to confirm their diagnosis ( as views has said).

does it stop or at least improve as soon as you start walking ? WED/RLS improves with movement.

I can't straighten or move my leg certain ways without sending shooting pains through my leg.
- In WED. movement relieves the pain, does not ever cause pain.

Sometimes the onset is when I wake up and stretch and it will kick in before I realize I am stretching
.. this sounds like wicked cramps, not WED. WED is helped by stretching, or unaffected, but never caused by stretching.

My sensations are not painful, so I don't think a description of them will help you decide. They come on when I sit or lie down, sometimes when I'm standing, they build in intensity until I absolutely HAVE to move, when I move they recede, and if I waited too long I have to something more than walk, like squats or toe-raises, or running. They wake me up, usually I come to with my legs kicking or in the air with my ankles turning and realize I've been doing that for a while.I get up right away as soon as I'm awake and aware, because I know it'll get much worse if I don't.

Curious about your ropinirole dose too.
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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