New to Board

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.
krblackwell00
Posts: 2
Joined: Sun May 21, 2017 9:55 pm

New to Board

Postby krblackwell00 » Mon May 22, 2017 4:53 pm

Hi all.
My name is Kat and I've been dealing with RLS since I was four years old (1987). It started out as pain in both of my legs then graduated to that constant feeling of needing to stretch your legs until you pull them out of the sockets. I still get the actual pain occasionally but more so now the urge to stretch. I prefer the pain because at least with that I can take ibuprofen and be done with it. But the urge to stretch is just unbearable because it is without letup. Is there anything to make it stop long enough for me to sleep until I am able to see a doctor? Walking and warm baths do not work.

stjohnh
Posts: 275
Joined: Sun Feb 14, 2016 3:13 pm
Location: Palo Alto, California

Re: New to Board

Postby stjohnh » Tue May 23, 2017 12:38 am

Welcome Kat. There are lots of folks with amazing knowledge and experience here to help. Briefly, narcotics (opioids) like vicoden, percocet, and similar help RLS and if you have some left over from a prior prescription that would help. The combination of kratom (a natural leaf with some opioid effects) and medical marijuana would likely help RLS until your doctor visit.

To get the most helpful advice it would be good if you could post additional information. Especially your age, any prior or current medicines for RLS, and what prior doctors have advised. More details about your symptoms would also be helpful. You say the urge to stretch does not go away if you get up and walk around. That raises the question of something else other than RLS causing your problems. RLS symptoms generally go away when a person walks around, but that doesn't help with sleep since the symptoms come back as soon as the person stops walking.

I just reread your post and a little advanced math suggests you are 34 years old. Hahaha.

I'm glad you found us. You are at the right place for advice and support.
Blessings,
Holland

Rustsmith
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Location: Pueblo, Colorado

Re: New to Board

Postby Rustsmith » Tue May 23, 2017 2:30 am

Kat, one of the requirements for a diagnosis of RLS is that the urge to move part of the disease needs to be reduced or resolved by movement. But, as Holland has said, stopping so that you can go to bed allows the urges to immediately return. So, walking helps resolve the discomfort but it does not do anything to allow you to sleep.

As for the warm bath, the water needs to be as hot as you can stand it, which for many of us is VERY hot since we often have a greater tolerance for heat than those without RLS. However, heat doesn't do the trick for everyone. Others find that very cold water, i.e. ice water is more effective.

Finally, take a look at all of the rest of the medications (including OTC ones) that you take to verify that you are not taking something that aggravates RLS. These are things like first generation antihistamines like Bendryl (and anything that includes it), many antidepressants, anti-nausea meds, etc.
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.

badnights
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Joined: Tue Mar 10, 2009 4:20 pm
Location: Northwest Territories, Canada

Re: New to Board

Postby badnights » Tue May 23, 2017 7:51 am

hi Kat
Sorry you're afflicted with this :(. Different people have different tricks - walking should reduce the discomfort, otherwise it's probably not WED/RLS, as Steve and Holland have pointed out. Working the muscles in other ways should reduce the discomfort too - squats, toe raises, other exercises that you can repeat over and over until the muscles are tired out. That type of thing is the only thing that works for me when the symptoms are serious. Some people find a bit of relief from compression bandages, or (if you have money to spare) pneumatic compression devises. Very hot or very cold baths, as mentioned (if you're the cold type, probably just your legs, not your whole body). Electric heat blankets, even little ones, can help some people - if not stop the symptoms, at least help stop them from starting.

There are some things you should learn about, if you don't already know them, before you see the doctor. When we first decide to see someone about this, we are usually desperate for sleep. But beware - there is greater desperation possible. First, you should learn about augmentation - see the Foundations brochures on what it is, but briefly, it's a worsening of the symptoms caused by medications that become dopamine or stimulate the dopamine receptors. Those are still regarded as front-line medications for RLS/WED by lots of doctors, despite this problem. The worsening is more likely to happen the higher the dose you're on, so stay as low as possible, and don't try to cover off all the symptoms completely.

And the worsening is more likely to happen if the amount of ferritin in your blood is lower than 100 ng/ml. So be sure your doctor checks your ferritin. It is not part of the normal iron panel, you have to ask for it specifically. Get the actual number, not just "it's normal" because for people without WED/RLS, normal can be as low as 20. For us, 20 is a danger sign.

If your ferritin is under 100, but especially if it's under 50, you will probably need to take iron supplements (with vitamin C on an empty stomach).

Sometimes, JUST taking iron reduces the symptoms enough - so try that before you start any medications.

There's a very informative booklet made for healthcare providers, but it is best that every patient read it too - theMedical Bulletin for Healthcare Providers put out by the RLS Foundation - see the link in my signature line for instructions on how to get at it - you need to be a member but it's worth it, they have lots of publications and those things carry a lot of weight with most doctors (you may find, as many of us have, that most doctors don't know much about RLS/WED)

I hope this information helps, and that you can begin to see how you'll be able to deal with this. Let us know how it goes!
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

krblackwell00
Posts: 2
Joined: Sun May 21, 2017 9:55 pm

Re: New to Board

Postby krblackwell00 » Tue May 23, 2017 11:26 am

Thank you for the suggestions. I will try the baths and compression bandages.

stjohnh
Posts: 275
Joined: Sun Feb 14, 2016 3:13 pm
Location: Palo Alto, California

Re: New to Board

Postby stjohnh » Tue May 23, 2017 1:07 pm

Kat, Steve's comment about Benadryl reminded me that many non-prescrption sleeping pills contain Benadryl, listed by its generic name diphenhydramine. Be sure to avoid those.
Blessings,
Holland

Polar Bear
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Location: N. Ireland

Re: New to Board

Postby Polar Bear » Tue May 23, 2017 1:44 pm

I'm one of those who preferred the icy cold method to calm my rls symptoms, just for long enough to let me get to sleep.
Just in case you decide to try it.........Get as deep a bucket as you can, use really cold water. Feet and legs in, it should take your breath away, almost painful. Then I use a cloth to draw the cold water up my legs a bit. It usually takes about 15 - 20 minutes to notice that the symptoms have calmed and I'd have about 20 minutes to get over to sleep.
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

badnights
Moderator
Posts: 4296
Joined: Tue Mar 10, 2009 4:20 pm
Location: Northwest Territories, Canada

Re: New to Board

Postby badnights » Sat May 27, 2017 10:56 am

krblackwell00 , try taking iron too. Best to get your blood checked for iron issues, first, in case taking iron would give you iron overload. But it's an important non-prescription way of controlling symptoms for lots of us. Here -- there was just some posts about that - someone who uses only iron to control it : viewtopic.php?f=20&t=9934
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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