Yet another newbie unlurked/ my story/ need help!

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Cinnamon193
Posts: 27
Joined: Thu Jun 11, 2009 11:56 pm
Location: Alberta

Post by Cinnamon193 »

mackjergens wrote:i know you can have pain after the shingles are gone, but pain from shingles is usually always just right in the same area as the shingles were. Pain from shingles can last for months! its a cold stabbing pain, that happens in the exact area the shingles were.

have you done any research on the meds you are taking, I have noticed several on the board that have discovered that some of the parkinson meds will cause painful legs. Cant remember about neurotin,but would be well worth the effort to research.

Hey there, thanks for the reply. I'm terrible at over-researching things and not working enough on my thesis (in med research). The neurontin has only helped my symptoms, quite a bit, it's just that I've gradually had to increase my dose to 3000mg. The DA drugs I've tried so far just don't do anything to my legs, good or bad.
Thank god my shingles went away completely. It was only in my arm. So from what I'm told, there's no way it could be linked to my leg pain some time later. Coincidence, I guess.
I'm so confused and so tired.... and still not 100% convinced this is rls, but I've been wrong before. :(

ViewsAskew
Moderator
Posts: 16204
Joined: Thu Oct 28, 2004 6:37 am
Location: Los Angeles

Post by ViewsAskew »

I started to re-read the thread and it seemed we might benefit from starting at the very beginning regarding RLS. There are four criteria.

The first is an URGE to move. Strong urge. You MUST do it. This, truly, is the underlying essential part of RLS. Now, some of us have a feeling that accompanies this urge, some of us do not. But, we all have one thing in common: we MUST move. There can be painful, wiggly, electrical, other, or no sensation behind this need.

So, I guess I'd ask: do you NEED to move? You mentioned you sometimes would have to get out of bed, so I'm guessing yes.

Next criterion is that moving makes it go away. So, when you walk, does that urge go away?

If there isn't a strong urge or if the painful feeling doesn't go away with movement, it's most likely not 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.

Cinnamon193
Posts: 27
Joined: Thu Jun 11, 2009 11:56 pm
Location: Alberta

Post by Cinnamon193 »

This has been my issue from the start, and where I'm super confused.

Yes, I have to get out of bed and pace to get the pain to stop. Laying still begins to get incredibly painful. But I don't have an urge to move for no reason. It's a motivated want to move to stop the pain. I'm not sure if that satisfies the criteria. I can stay in bad and just pound on my legs with my fists, or tighten my quads really tight, and it has the same effect of stopping the pain. For a second anyways. hmmm... I'm now wondering if I was off my meds, if I would get that strong urge to move, independent of anything else. I only spent a very short time before starting neurontin.

And most definitely, walking around stops the pain. Until I sit down again, and it starts all over again. Part of my reason for not walking around too, is because some days I just can't walk at all due to other pain reasons. Maybe that's why I hit my legs sometimes instead of walking.

Am I crazy or what? lol

SquirmingSusan
Posts: 2991
Joined: Sun Nov 12, 2006 4:08 am
Location: Minnesota
Contact:

Post by SquirmingSusan »

The need to move is overwhelming and not related to any conscious thought about needing to move to relieve the pain. It really is an urge to move for no reason. Pain from other sources can also often be relieved by walking - pain from a herniated disc, for example, usually responds to walking.

Does that help clarify things?
Susan

ViewsAskew
Moderator
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Joined: Thu Oct 28, 2004 6:37 am
Location: Los Angeles

Post by ViewsAskew »

I can make it muddier by saying that I move to make that nasty sensation go away, BUT underlying that sensation is that I want to move. If I didn't have the sensation, I would get up and move about anyway.
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.

Cinnamon193
Posts: 27
Joined: Thu Jun 11, 2009 11:56 pm
Location: Alberta

Post by Cinnamon193 »

OK that actually clarifies it for me - the above posts. And now I'm wondering if I don't make the criteria for rls, because I don't think I get that. Although, I've honestly only spent a day or so NOT on neurontin the whole time I've had rls symptoms (and that was months ago), so maybe that's helping, I'm not sure.
This is so frustrating, and I feel terrible even thinking that knowing that some of you here have dealt with worse for decades. Hugs to you all.
Thanks very much for your help.

mackjergens
Posts: 406
Joined: Sat Jul 21, 2007 5:10 am

Post by mackjergens »

I have just the old rls, no pain just the creepy crawlies in legs, and trust me, if you have that there is NO way you can stay in bed, you just absolutely have to get up and walk, and walk, years ago before meds, I would have to walk all night. because every time I even sat down, I could only stay there for a few seconds, if i didnt get up and move, I honestly think I would lose my mind. I had a Dr tell me he really believes if a person with rls were tied down, they would lose their mind. I cant really explain it any better, I just know for me, its always been the creepy crawlies in legs, have always said, it feels like ants crawling inside my legs.

now if I wake up with rls, I will get up and take a pain pill (yes pain pills stop the creepy crawlies) and go sit in my recliner and rock and rock using my legs to rock the chair , usually I can manage to sit there until the med kicks in. then I just lean back in recliner and sleep, because many time I have started to bed only to have the rls kick in again. Yes I know its strange. but that is rls for me. At least I can sit instead of walking which is a big help. Now IF the rls is reallllly strong, even that will not work. But I can usually take enough pain med to allow me to use the recliner.

Cinnamon193
Posts: 27
Joined: Thu Jun 11, 2009 11:56 pm
Location: Alberta

Not RLS....

Post by Cinnamon193 »

Curious indeed....

I had an apt with a vertigo neuro (neuro #2), who IMMEDIATELY got me into a neuromuscular neurologist (neuro #3). This newest neuro did a whole host of tests and exams, and concluded I have a classic case of small fiber neuropathy. Neuro #1's diagnosis of RLS is out the door.

I guess this explains why none of the RLS drugs worked for me.

Thank-you all for all your help.

And you never know, I might be back here next week, back to the RLS diagnosis, or who knows, maybe it's really both. Wishing you all peaceful sleeps.....
Hugs,
Megan

ViewsAskew
Moderator
Posts: 16204
Joined: Thu Oct 28, 2004 6:37 am
Location: Los Angeles

Post by ViewsAskew »

I am so glad you know. We've had several small fiber neuropathy sufferers who were misdiagnosed with RLS. Since some of the drugs help both, like Neurontin, that makes it even harder.

Megan, you're welcome here anytime, though I imagine you really don't want both!
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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