Painful RLS

For everything and anything else not covered in the other RLS/WED sections.
ViewsAskew
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Painful RLS

Postby ViewsAskew » Tue Nov 07, 2017 7:38 am

I have always had the creepy crawly RLS with a STRONG urge to move - so strong that if you try to avoid it, I swear I move involuntarily. When people talk of painful RLS, I had not idea what that felt like. Maybe I do, now.

In the last few weeks, I wake up in the night and my legs feel tight and they hurt. I am usually curled up at this point. I stretch out my legs and during all of this I have an urge to move, to stretch, to straighten, to shake. The pain is hard to describe - somewhat achy, definitely constant, and it goes away mostly when I move. It is much easier to deal with - so far - than the electrical kind.

I have to wonder what it is, though. And why. Is it RLS? And, if so, how many of us have both electrical and painful types, especially when you only had one to start? I also am wondering if this is augmentation. I am pushing it with the DA - I am almost out of meds and cannot get any until I have my annual this Friday. I did not want to run out of methadone, so I have been very stingy with it, making me use the DA for longer than I would have normally.
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.

debbluebird
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Re: Painful RLS

Postby debbluebird » Tue Nov 07, 2017 9:35 am

Sounds more like augmentation to me. Recently when I stopped my oxy and DA, it took awhile, but I am so much better now. Both drugs were urging me on to take more of them and when the RLS and PLMs would hit they were so much stronger each time. Now, I am just taking the methadone. Taking it early has stopped the hyperalertness. Or maybe I am just in a good period. Who knows. In a week or less, I might be complaining again of not sleeping. The withdrawal with both meds wasn't bad, only because I was limiting them so much.
Hope you figure it out. Of course, the stress that you are under right now doesn't help at all.

ViewsAskew
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Re: Painful RLS

Postby ViewsAskew » Tue Nov 07, 2017 5:23 pm

I have always had augmentation be more of the electrical feeling and more involuntary movements. This just seems so different from anything I have had before.
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.

debbluebird
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Re: Painful RLS

Postby debbluebird » Tue Nov 07, 2017 10:08 pm

There always seems to something new all the time.

badnights
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Re: Painful RLS

Postby badnights » Sat Nov 11, 2017 4:28 am

I get the painful kind sometimes, but very rarely, and it never seems to be as strong as my usual electrical kind. It always takes me some minutes before I realize that it's WED, and the only thing that clues me in is the urge to move. It's otherwise clearly a pain, albeit a deep ache that seems to have no cause.
Beth - Wishing you all restful sleep tonight
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viewtopic.php?f=5&t=6532&p=61601#p61601
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fuz_mind
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Re: Painful RLS

Postby fuz_mind » Sat Nov 11, 2017 12:31 pm

ViewsAskew wrote:I have always had the creepy crawly RLS with a STRONG urge to move - so strong that if you try to avoid it, I swear I move involuntarily. When people talk of painful RLS, I had not idea what that felt like. Maybe I do, now.

In the last few weeks, I wake up in the night and my legs feel tight and they hurt. I am usually curled up at this point. I stretch out my legs and during all of this I have an urge to move, to stretch, to straighten, to shake. The pain is hard to describe - somewhat achy, definitely constant, and it goes away mostly when I move. It is much easier to deal with - so far - than the electrical kind.

I have to wonder what it is, though. And why. Is it RLS? And, if so, how many of us have both electrical and painful types, especially when you only had one to start? I also am wondering if this is augmentation. I am pushing it with the DA - I am almost out of meds and cannot get any until I have my annual this Friday. I did not want to run out of methadone, so I have been very stingy with it, making me use the DA for longer than I would have normally.


my RLS has always been predominated by pain, which partly explained why it took so long to diagnose. Is your pain sort of like a deep constant achy feeling deep in the bones? like an itch that you can't reach ?

That has been my experience of painful RLS. Rentless before I started on ropinirole, to the point that I had thoughts of cutting my legs off. Tramadol works for me with this sort of pain temporarily, although with the ropinirole, the frequency is reduced. If I was woken up by the pain, the tramadol works and when the pain melts away, I sort of fall asleep

ViewsAskew
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Re: Painful RLS

Postby ViewsAskew » Sun Nov 12, 2017 1:44 am

yeah, I would say it is an achy pain - mostly constant - and I would say it is about bone deep. It reminded me of two other times in my life. The first was clonazepam withdrawal - shakes, vomiting and a deep ache in my hip bones. The second was when I was so low in vitamin D - something like a 6 or 8 - my bones hurt all throughout my body. This is similar to both of those. As Beth said, for me the indication that it must be RLS is the urge to move. It has awakened me every night for a couple weeks, now.
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.

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SquirmingSusan
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Re: Painful RLS

Postby SquirmingSusan » Sun Nov 12, 2017 3:54 am

My RLS used to be really painful, but turned to the creepy-crawlies when I brought my vitamin D levels up. When I reacted/augmented on Requip and Mirapex, it was painful like someone lit my legs on fire, along with having to literally dance around to control the urge to move. I hate this disorder, and what you/we have to put up with!
Susan

fuz_mind
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Re: Painful RLS

Postby fuz_mind » Sun Nov 12, 2017 6:07 am

as long as pain disrupts sleep, it needs to be dealt with - rls or not!

strangely after my recent IV iron, it's no longer painful, but has transformed into an inability to sit still

Ann: do you think it's worth checking out possibly some minerals that your body might be lacking?

badnights
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Re: Painful RLS

Postby badnights » Sun Nov 12, 2017 7:17 pm

It's interesting that both Susan and Ann felt the painful kind when they had low vitamin D, and the electrical kind once D levels were raised.
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

ViewsAskew
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Re: Painful RLS

Postby ViewsAskew » Sun Nov 12, 2017 8:40 pm

Fuz-mind, I have - sadly - no low minerals except low serum ferritin. I do get regular IV iron (have had three) and it helps, thankfully, but does not eliminate. I get about a 50% reduction in meds, which makes me very happy.
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.

ViewsAskew
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Posts: 14999
Joined: Thu Oct 28, 2004 6:37 am
Location: Chicago

Re: Painful RLS

Postby ViewsAskew » Sun Nov 12, 2017 8:50 pm

badnights wrote:It's interesting that both Susan and Ann felt the painful kind when they had low vitamin D, and the electrical kind once D levels were raised.


I agree - have not heard anyone say that before. Both the depression and bone pain lifted when I increased the D. But, the depression lasted - in mild to severe - for almost five years. It lightened when I increased the D, as well as when I took an AD for a few months. It wasn't until I realized I was talking to strangers and had joy and excitement at levels I had forgotten about that I realized just how long I felt less than optimal. Not sure how much is WED related, iron related, D related, stress related, etc. But, seems likely all were part of it.
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.

Yankiwi
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Re: Painful RLS

Postby Yankiwi » Tue Feb 20, 2018 1:19 pm

It’s 2:00am and I’m on holiday but my RLS doesn’t know that. I’ve been reading unread posts, don’t know how I missed this one as my RLS has always been the painful kind from long before I took any medication. Just pain, pain, pain. My vitamin D level is perfect.


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