Pain, not "creepy crawlies"?

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RockvilleMom
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Joined: Wed May 07, 2014 2:13 am

Pain, not "creepy crawlies"?

Post by RockvilleMom »

New here. I have suffered from "growing pains" all my life - I'm 37. After a one-time experience with a more classic RLS episode years ago (overwhelming urge to move my legs) it dawned on me that perhaps the painful feelings I have are actually RLS. I would call mine very mild - as an adult I am able to push/mentally hang in through the discomfort until I fall asleep, and I stay asleep. Once in a blue moon I require pain relief.

My now-5 year old daughter has always been a terrible sleeper. At about age 3, she was finally able to understand what was bothering her and verbalize it as "leg cramps". (I felt like an IDIOT for just assuming she was being obstinant.) She gets them 6-8 times a month, in the evenings. Like mine, they set in and you feel "tired" but don't really feel the pain until you settle into bed. Then she howls, kicks, bangs on her legs and the only thing that will work is a heating pad or ibuprofen. A heating pad may help her fall asleep, but she will likely wake in the middle of the night in pain if I do not intervene with ibuprofen. Tylenol has no effect. Massage helps temporarily.

She gets them in either or both legs, sometimes in her feet (less painful) but in her calves and quads. She claims to get them in her arms, too, which I never did.

Anyone get more pain-like symptoms?

badnights
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Re: Pain, not "creepy crawlies"?

Post by badnights »

Yikes, poor thing. To have it in her arms already.

Is she eating a normal diet? ALthough all nutrients are important, iron is critically important. Not only does there have to be enough in the diet, it also has to be absorbed properly. If she has gut problems, iron might not be absorbed properly. Celiac disease is a common culprit but there are other issues (bacterial overgrowths, irritable bowel, Chron's disease god forbid), though I'm not sure how common they are in people so young.

Some people - doctors included - think low Mg can cause symptoms, though I've not seen that in the WED/RLS literature.

A lot of people - one third at least, but I wouldn't be surprised if it was one half - feel their symptoms as pain. But even so, ibuprofen does nothing for it, because it's a different kind of pain. Since the ibuprofen seems to work, keep up with it, but keep a sleep and medication diary for her, so that you can go back over it to determine if there is really improvement on the ibuprofen nights (we are ALL subjective). If there is, the pain might be something other than WED/RLS (or, maybe there's inflammation involved in WED contrary to almost all the literature).

On the bad nights, maybe the best thing is to let her get up and walk around for 30 minutes.
Beth - Wishing you a restful sleep tonight
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I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.

ViewsAskew
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Re: Pain, not "creepy crawlies"?

Post by ViewsAskew »

I think this is one of the least well understood parts of WED/RLS. Until a few years ago, many doctors wouldn't even agree to pain as a component. Now, they say it, but their analogy is tickling - if you were tickled for a long, long time, it would start to be perceived as painful. WED can also be perceived as painful in the same way."

But, it sounds to me as if people who talk about WED as painful mean that it hurts!

The current criteria for WED include 4 components:

1. There is a STRONG urge to move. You cannot stay still. This is usually accompanied by some uncomfortable sensation. But, the sensation is secondary to the urge.
2. Movement resolves this urge. When you stop moving, the urge may or may not come back.
3. It is worse when at rest.
4. It follows a circadian pattern and it worse at night. Even if you have it all the time, the night is the worst.

One thing many of us here have often hypothesized is that there is not one type of WED. There MUST be multiple forms of it. Might one of these forms include pain - I mean pain similar to what we already think of as pain? It's possible.

The key thing I'd want to know - does walking help? If she gets up and moves, does it stop? As badnights was, I'd be concerned that there is either something else going on, or something in addition to.

One of our original members, becat, has painful WED/RLS. From what I remember, she describes feeling as your daughter does. I do not know if her PM still works, but you could try locating her profile and PMing her. She might get a notification and respond. She isn't active here often anymore. I seem to recall that she said she liked having a very heavy blanket on her legs when she was young, but I could be remembering that incorrectly.

Another option is to write to Dr Buchfuhrer. He answers patient letters. His email is somno@verizon.net. He could tell you his thoughts and provide some medical input.

I do not have pain and am unable to help at all.
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: Pain, not "creepy crawlies"?

Post by Rustsmith »

One of the WED symptoms that I occasionally experience these days feels almost exactly like a leg cramp. They occur at night, sometimes after I have already gone to sleep. But I know that it is not a cramp because it only hits one part of a calf or hamstring muscle and I occasionally experience cramping of my legs during the later parts of running a marathon. The affected section of muscle is very tight and responds well to massage. The only problem is that once I get one area worked out, it almost always hits another section of muscle in the other leg. I can spend 15 to 20 minutes chasing these cramp/spasms around my legs before it hits all of the muscle segments and it gives up and lets me go back to sleep.

And for reference, I only experienced the creepy crawlies in the early stages of my WED. These days when it isn't the cramping it is just the overwhelming need to move.
Steve

https://www.mayoclinicproceedings.org/a ... 0/fulltext
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.

RockvilleMom
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Joined: Wed May 07, 2014 2:13 am

Re: Pain, not "creepy crawlies"?

Post by RockvilleMom »

Thanks for your responses. Since I highly suspect her issue is identical to mine, it has the following characteristics: movement and massage helps the discomfort a bit. Massage is better than movement but neither will make them go away. It is certainly more intense when trying to lie still. But it doesn't go away entirely. Ibuprofen works like a charm, every time, and quickly for both of us. I'm a runner, and the kind of pain ache we get isn't like over exertion discomfort. It's naggier. More general. The nights come in sets, meaning usually it happens 4-5 nights in a row or in close succession. Then she's ok sometimes for a few weeks.

I suppose we are fortunate and if she ends up in the same state as me, I'd call that a win. It's just enormously frustrating.... And I wish there were more on this subject.

Thanks for the tips and advice, I appreciate your taking the time. Hope to learn more and would love to communicate with a physician who doesn't dismiss it as growing pains.

ViewsAskew
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Re: Pain, not "creepy crawlies"?

Post by ViewsAskew »

Some doctors believe growing pains really are often WED. But, they really have NO clue what those pains really mean! They aren't always WED, so what are they?????

I hope you can find someone. My guess is that this isn't going to be easy - but you already know that :-(. Doctors seem to like tidy and neat - things that fit perfectly into their assigned boxes. Since so little is known about WED, that's hard to do. At least those of us with the *typical* and expected symptoms may find someone to listen to us. But, when symptoms are outside of those boundaries, they really do not know what to do.

I hope some of the suggestions help some.
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.

plshelpme
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Joined: Wed Jul 09, 2014 8:46 pm

Re: Pain, not "creepy crawlies"?

Post by plshelpme »

My leg cramps almost feels like being in labor but in my legs. The urge comes to tighten the muscle as hard as I can for about 10 seconds and then relax it. I also have times when I just shake my legs almost like a spasm. It has gone way past the creep crawly stage into horrible pain.

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