Greetings From New Guy

Whether new to RLS/WED or new to the site, we welcome you and invite you to share your history and experiences with RLS/WED, introduce yourself, and ask questions. Successful treatment starts with a solid understanding of this disease.
Bob_the_Bear
Posts: 5
Joined: Mon Aug 22, 2016 8:19 pm

Greetings From New Guy

Postby Bob_the_Bear » Mon Aug 22, 2016 9:43 pm

Hey everyone, Bob here. I'm a 62 YO male with what is most likely hereditary RLS since my dad had it as well. I guess I've had it for 12 or more years. It started as an occasional urge to move feeling in my ankles and feet, and has progressed to a constant, very painful condition that is robbing me of my health.

I'm currently on 1800 mg Gabapentin, and 10mg Hydrocodone. I am afraid admit this to my sleep doctor for fear he will cut my prescription, but my pain is often so bad that some nights I end up taking an extra Hydrocodone pill and usually run out 5-10 days early, which only makes it worse. I've also tried Requip, which made me bat crazy after 3-4 nights, and Clonazepam, which did not seem to help at all.

I often read about the urge to move the legs, but mine is only in my ankles and feet. And it's EXTREMELY painful. Sometimes I get waves of pain that make me cry out while watching TV in the evening. This is from a guy that once rode 250 miles on my motorcycle with 3 broken ribs because I didn't want to leave my bike in a different state. So I have a high tolerance for pain, but this is kicking my butt. I often end up taking 3mg melatonin on top of my other meds just so I can go to sleep.

Laying on my stomach, with my feet stretched out below like I am wearing swim fins sometimes helps a bit.

In my 30's and 40's I was very athletic and ran, cycled or lifted every day. However I am presently obese, having lost 100 lbs two years ago, only to gain it all back. I wake up several times a night, and never sleep past 4:00. Exercising is almost impossible, my legs feel leaden in the morning, I think from the Gabapentin.

From reading others stories, my gut tells me RLS likely many different causes, but with similar symptoms.

Sorry for such a long rant, but it feels like others can probably relate.
Bob

Polar Bear
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Location: N. Ireland

Re: Greetings From New Guy

Postby Polar Bear » Mon Aug 22, 2016 11:10 pm

We can certainly relate to your sufferings from your symptoms even though we don't all feel the symptoms in the same fashion, or find that not all treatments help all of us in the same way. There is often much trial and error on the road to symptom relief.

There is an element of insomnia that seems to come with RLS and again we are not all affected in the same way. For example, you don't sleep past 4am whereas I generally don't get to sleep until 3 or 4am, and never sleep for more than 2 hours at a time.
I can sometimes find temporary relief also by laying on my stomach but I bend my knees with my feet in the air.

You don't need to apologise for a rant, we've all done it.
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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Posts: 14645
Joined: Thu Oct 28, 2004 6:37 am
Location: Chicago

Re: Greetings From New Guy

Postby ViewsAskew » Tue Aug 23, 2016 12:22 am

Hi Bob - I continue to be sad every time I read a new member's story.

I had a couple of thoughts. First, one thing we know is that pain from other conditions can be mistaken for RLS when a person had RLS prior to the condition that added more pain. We often just assume it is RLS, but it may not be. It can be VERY hard to separate these out. But very worth it. Small fiber neuropathy is one such condition.

Second - some people do have it only in feet and ankles. Like you, I read that it was in a different place where I feel it - most things I read said it was in calves. But mine is in my thighs. We have learned that almost any body part can be affected - including the face!

Third, iron is implicated in RLS - and it's very important to make sure you know your serum ferritin as well as your hemoglobin. Your hemoglobin is likely fine and your serum ferritin may be, but often it's low for us. If it below 100 (and ask your doctor for the actual value) iron may be very helpful.

Last - just wanted to make sure that moving actually does relieve your symptoms.
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.

Bob_the_Bear
Posts: 5
Joined: Mon Aug 22, 2016 8:19 pm

Re: Greetings From New Guy

Postby Bob_the_Bear » Tue Aug 23, 2016 2:02 am

ViewsAskew wrote:Third, iron is implicated in RLS - and it's very important to make sure you know your serum ferritin as well as your hemoglobin. Your hemoglobin is likely fine and your serum ferritin may be, but often it's low for us. If it below 100 (and ask your doctor for the actual value) iron may be very helpful.

Last - just wanted to make sure that moving actually does relieve your symptoms.


Thank you for your reply. About 3 years ago, I was given a thorough exam by Dr. Ondo in Houston, one of the leading experts in RLS. My ferritin levels was fine, as it was during my physical last year, but I don't remember the actual value right now.

Moving does help, it's actually the only thing that does, other than the meds. I often will watch TV while slapping the bottom of my feet on the floor. It seems to feel best in the winter, when the wooden floor is cool to the touch.

Bob
Bob

Rustsmith
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Re: Greetings From New Guy

Postby Rustsmith » Tue Aug 23, 2016 2:39 am

Bob, I am like you in that my RLS induced insomnia causes me to wake up at 3 to 4AM. I also take gabapentin (900 to 1200mg). One of the features of gabapentin is that it has a half life of about 4 hrs, so if you take it at bedtime then it is probably wearing off around 4AM. I will be seeing my doctor next week and one of the things that we will be talking about is how to extend my hours of sleep because months and months of reduced sleep time has been shown to reduce life expectancy. I don't know where we will land, but one possibility is to add clonazepam to my already extensive list of meds. I am currently using an edible form of medical marijuana, but that only works in some states and has also presented problems of its own for me.

As for your visit with Dr Ondo, I used to be one of his patients. I would say that if he told you that you have RLS, then you have it. Of course, the next question is the one raised by ViewsAskew, which is whether you also have a second condition that is additive to the RLS.

Finally, we would all agree that there are different causes for RLS and that it may even be a number of different diseases that have very similar symptoms. So far there have been six genes identified with primary RLS (which means that the RLS isn't due to something else). It may very well be that they will eventually find that variations of the combination of genes may explain why we all seem to experience the disease in slightly different ways.
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.


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