Achy morning legs

For everything and anything else not covered in the other WED/RLS sections.
Joanie60
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Achy morning legs

Postby Joanie60 » Tue Dec 31, 2013 5:38 pm

Hi friends!

I have RLS/WED, was diagnosed about 3 years ago. Thanks to some great doctors, it is under control with meds (Percocet, 5mg/ two to three tablets per day). Although I had nighttime symptoms for all three years (every night), I have just started having achy legs in the morning. I mean really achy legs. The spot(s) move around...upper thigh, lower thigh, inside, outside, left leg, right leg. If I take a percocet, the feelings go away. This has increased my dosage from 2 tablets a day to 3 tablets most days.

I'd rather just keep to 2 tabs per day but it works, so I take the additional one probably 5 out of 7 days. Moving around also helps but I have a desk job, which makes it hard.

So my question is: are morning achy legs part of RLS? I hope this doesn't mean I am getting worse (iron/ferritan levels are fine, thats not the problem) but I am feeling a bit discouraged.

Thanks for your thoughts! :mrgreen:

ViewsAskew
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Re: Achy morning legs

Postby ViewsAskew » Wed Jan 01, 2014 1:43 am

Hi , Joanie60

When you say "achy legs" is that how you experience WED/RLS all the time? And, if you didn't take the Percocet (oxycodone/acetaminaphen), would you be able to reduce the symptoms by walking, moving, or other typical ways of relieving RLS?
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: Achy morning legs

Postby Rustsmith » Wed Jan 01, 2014 6:48 pm

Joanie 60, Ann's questions about your symptoms are key to determining whether your aches are WED or something else.

You might want to check out the question and the answers that I received on this thread: viewtopic.php?f=5&t=8661

In my case, my legs ache or become stiff in the evening with the same sensation that I get if I overdo my training as a competitive runner. I have been able to determine that when I know that I have not done anything in my training that warrants these aches and pains, that it is WED. Following the advice that I received here, I have been able to correlate the pain with delays in my medication. I can also temporarily resolve the sensations by walking around, massaging the relevant muscles or heating them up in a hot shower. NSAIDS also have no effect when the problem is WED but are quite effective when I have been overdoing it with my training.
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.

Joanie60
Posts: 194
Joined: Thu Mar 15, 2012 2:48 pm

Re: Achy morning legs

Postby Joanie60 » Thu Jan 02, 2014 7:44 pm

Ann~

I have the jumpy leg thing (sometimes arms too) in the afternoon and nighttime. I define that as an unrelenting need to move and if I can't, my legs will move themselves. If I have not taken my evening dose of meds, I may fall asleep but have the jumps waking me up. I also have the periodic limb movement thing, always have!! But nighttime is definitely RLS.

In the morning, the achy legs respond to rubbing and walking around, or meds...not advil or quietly moving them at my desk.

Steve~

Thanks for the link to your thread! Full of great info. I wish I was a runner :-). I am a run of the mill 53 year old small business owner. I have actually done the SIT test at Hopkins as part of a clinical trial, and it is indeed hellish. But it got me into the Hopkins docs who are fantastic!!

I just talked to my doc and she says morning time symptoms are rare and wants to put me on a patch next month if it doesn't get better. I had a very bad experience with Requip (augmentation like nobody's business) and the gabapenin family of drugs made me gain a pound a day for the eight days I was on them...I'd rather not sleep!!

I would like to stick to my current regime (2-3 percocets a day) but I guess I am just trying to figure out if the morning achy thing could be something besides WED. It unfortunately is not exercise-induced (unless I am jumping marathons in my sleep...but my husband says he doesn't notice it at all) and does not respond to Advil. Walking around is hard while running a business.

On a side note Steve, I don't know how you did the flying thing. I do fly a lot but always "save up" an extra pill or two so I can stay medicated. An hour and a half in the car is about all I can handle without running laps around a rest stop parking lot.

With all that whining aside, I am so blessed to have the Hopkins docs and for the rest of you not fortunate enough to have access to them: no fear, they are doing research non-stop to help us out!!I have participated in two clinical trials and will continue to do so whenever they come up. Dr Allen is just awesome and although I have not met Dr Early, I admire his work and dedication to what many think is a crazy or made-up disease.

Here's to a great 2014 everyone :mrgreen:

Rustsmith
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Re: Achy morning legs

Postby Rustsmith » Fri Jan 03, 2014 1:10 am

Joanie60, I was able to fly for all those years by learning my own coping mechanisms. I also had the advantage of flying business class on long international flights rather than "short" domestic flights. The seats have more leg room (for stretching) and on long flights, it is not a problem to get up and walk around the cabin. As for my coping mechanisms, I have insisted on aisle seats for many years. I also learned to keep my mind involved, which meant many good books over the years or catching up on the latest really interesting movies until laptops and computer games came along. My one "fear" was getting trapped during meal service times and having my legs act up. I always kept my book handy for those times or else I just suffered through it.

I also learned to "use" my WED given ability to function without sleep when flying for 24+ hrs. I could always last until I got to my hotel, took a very hot shower and then collapsed into bed.

Finally, I don't remember if I mentioned it in the earlier thread, but I feel that the chronic jet lag that I had for many years also helped to keep my WED at bay by keeping my circadian rhythm out of sync all the time. My body never knew when it was supposed to act up, so I suspect that often that time fell at night after I was already asleep.
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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Re: Achy morning legs

Postby badnights » Mon Jan 06, 2014 3:20 am

Joanie do your morning achy symptoms stop, then the usual RLS symptoms start? Or are they continuous with the usual symptoms? Morning symptoms are not rare, and RLS/WED is often achy, but the morning symptoms represent an earlier and earlier beginning time as the severity of the disease increases. In other words, your symptoms used to start at 6 pm, then 4 pm, then noon, now 10 AM.

Dr Allen is just awesome and although I have not met Dr Early, I admire his work and dedication to what many think is a crazy or made-up disease.
Totally agree. I talked with Dr A when volunteering for a trial and can't help but like him. The work both of them has done is incredible.
Beth - Wishing you a restful sleep tonight
Click for info on WED/RLS AUGMENTATION & IRON
I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.

Joanie60
Posts: 194
Joined: Thu Mar 15, 2012 2:48 pm

Re: Achy morning legs

Postby Joanie60 » Tue Jan 07, 2014 4:23 pm

Beth~

The morning achy symptoms are lasting longer now...even into the evening. My "usual" symptoms of the twitch and jumps begin when I rest for the evening (reading, sleeping (lol), etc). I am a little stumped because I don't know how to treat the aches independantly of the WED. Percocet seems to be the only thing that helps.

I did go to Gentle Yoga last night for first time in years. At first it was very difficult because I was sitting still but as we did stretches, etc, the aches went away. I talked to my instructor, told her I may have to stand up and move around (which she was horrified I hadn't done last night but I didn't want to be a jerk first day haha). The aches came back when I got home. Of course!!

The only other med I am on is Lexapro. I had upped my dose to 40mg in Oct and have just cut back to 30, hoping that would help. I am not a candidate for Wellbutrin.

I've not heard of augmentation on opiods. Have you??? I went thru hell with Requip.

Thanks for your thoughts!!

Joanie

ViewsAskew
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Re: Achy morning legs

Postby ViewsAskew » Wed Jan 08, 2014 2:44 am

Tramadol is the only opioid-like drug that causes augmentation.

It's so hard to separate out some of these things and so many are very similar.
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.

Joanie60
Posts: 194
Joined: Thu Mar 15, 2012 2:48 pm

Re: Achy morning legs

Postby Joanie60 » Wed Jan 08, 2014 3:42 am

Thanks for info on Tramadol, that makes me feel better!!

Joanie60
Posts: 194
Joined: Thu Mar 15, 2012 2:48 pm

Re: Achy morning legs

Postby Joanie60 » Tue Feb 04, 2014 7:35 pm

Update!! I have figured out part of the problem. I have been taking an increased amount of Lexapro for depression. I moved from 30mg to 40mg and finally figured out that might be the problem. I lowered to 30 mg again and BINGO!! The morning symptoms have delayed to lunch time for the most part and I can stick with 2 percocets per day about half the time.

(for those who are up on SSRI, I cannot take Welbutrin because of a previous anorexia diagnosis!! My eating disorder is completely under control but for some reason, that disallows me from ever taking Welbutrin).

In the past, I have tried to get down to 20mg Lexapro but that is a disaster. 30mg seems to be my sweet spot!

Thanks again Ann for info on Tramadol v Percocet...brought me great mental relief!!

ViewsAskew
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Re: Achy morning legs

Postby ViewsAskew » Tue Feb 04, 2014 7:57 pm

Very good news!
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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Re: Achy morning legs

Postby badnights » Tue Feb 18, 2014 9:27 pm

I was asking about the continuity of the symptoms in an effort to help figure out if the aches were part of the WED or perhaps something else. Your reply suggests they are part of the WED, but that info isn't very helpful now, is it? sorry I wasn't back here for a while. But you've figured it out and that's awesome, it's not always simple to pin it down, and often we look and look for a reason but never find it. I'm glad you found it.
Beth - Wishing you a restful sleep tonight
Click for info on WED/RLS AUGMENTATION & IRON
I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.

Joanie60
Posts: 194
Joined: Thu Mar 15, 2012 2:48 pm

Re: Achy morning legs

Postby Joanie60 » Tue Feb 18, 2014 9:46 pm

Thanks Beth, it sure is a relief. And as time has gone on, no bad effects from lowering the Lexapro either :-)

badnights
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Re: Achy morning legs

Postby badnights » Tue Feb 18, 2014 11:15 pm

that's such happy news :)
Beth - Wishing you a restful sleep tonight
Click for info on WED/RLS AUGMENTATION & IRON
I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.


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