The pain thing...

[SquirmingSusan]

I'm wondering if anyone has a clue as to why some of us experience so much pain with RLS? Mine has been particularly severe since augmenting on Requip.

To me it seems like the same sensations, but much more intense, making me perceive them as pain. The sensations/pain are in the same places in my body, and they switch back and forth. When I'm having severe RLS pain, if I take OTC painkillers, the pain switches to the "snakes in the bones" sensations. I've noticed that as the Vicodin kicks in at night, there is a brief period where the pain transitions to the other sensations, plus some twitching. Then it all goes away until the Vicodin wears off in the morning. I've NEVER had so much pain in my legs as since augmenting.

Interestingly, the pain goes away with walking. And it floats around. Some days it will be in my right leg, other days in my left ankle. Sometimes in my arms. I also have localized pain due to various injuries, but it's a different kind of pain.

Has anyone else noticed a connection between the sensations and the pain?

Susan

[ViewsAskew]

Pain is a weird part of some people's RLS. Lynne once wrote that she heard it is up to 50% of people who have pain. In Dr B's new book, he indicates it's not a majority, but skillfully avoids saying what exactly it is. Some doctors do not even acknowledge that there can be pain.

So, brave of you to bring it up. I'm guessing some of our own members are at best ambivalent about pain, and some may think it's not RLS.

Here's what Dr B says, "A minority of people experience painful symptoms, which are often described as burning, aching, or simply painful. These symptoms may occur in addition to the more typical sensations. However, in some people the painful symptoms may be a result of some separate but associated problem, such as neuropathy (disease of the nerves)."

He continues, "The large variability of the uncomfortable sensations and the difficulty in describing them contributes to problems in communicating with physicians."

Since we don't know much about RLS yet, it's impossible to know what this pain is. I guess is could be one of several things. As Dr B said, for some people it could be a missed diagnosis of something else that is known to the medical community. But, since the medical community still doesn't know everything, it's possible that there is another disorder, as of yet unidentified, that occurs along side RLS in some people. Other people may, as you mentioned, experience the RLS as painful after it either gets worse, or continued unabated for great lengths of time. This makes sense, because some people have pain immediately as children. Others only get it when their RLS gets very bad. Dr B uses the analogy of tickling for how some people might see it as painful. Tickling isn't thought of as painful, but when it continues too long, it can become exceedinly annoying and so unbearable that we consider it painful.

I don't have painful RLS. I do have painful neuropathies that are NOT any neuropathic disease. These stated immediately when I started Mirapex. They decreased but did not stop when I stopped it. These are like bee stings that last anywhere from a part of a second to 2 or 3 full seconds. A lot of other people mention these, too. So, I guess yet another explanation is that some of us have some component of pain that we don't separate out from the RLS. As Dr B says, the language to explain is just isn't all that precise!

[tazzer]

i have thought long and hard on the best way to describe the pain i feel in my legs. to me, it feels like someone is inside my legs and taking their fingernails and digging them into the muscles in my legs. if i get up and walk, i have to walk, do squats, and rub my legs till my hands are raw until my pain med kicks in. i only get twitches and leg jerks occasionly, no creepy crawlies, just what i described earlier. and in the morning it feels as though someone has taken a baseball bat to the bottom of my feet, my muscles feel drawn up like there is a string attached and has pulled them as tight as they can.

dee

[becat]

The desire to move the legs in association with unusual or uncomfortable sensations (paresthesias/dysesthesias) deep within the legs, usually in the calves; in some cases, the arms may also be affected. These sensations are described as creeping, burning, tingling, cramping, aching, itching, pulling, crawling, or "water flowing" deep within the affected extremities. Patients with mild or moderate RLS characterize these sensations as uncomfortable; for the most part, they are not perceived as painful. In rare cases, unusual sensations occur in the feet. In even rarer cases, these sensations may also be present in the trunk or genital area. These feelings may move from one part of the body to another or may affect only one side of the body (asymmetric). For example, one leg may have unusual sensations whereas the other does not.
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This is what is found under the listing (one of them) at the We Move Org....
I have said many times before that I have read that at least 50 % experience pain with their, lol, just can't remember where.....Oh Well.
I think it's simple to see where many might find RLS painful after they reach a certain stage of progression. With mine it's the pulling and tightening of my muscles that just aches, deep inside my bones. Now, it's my muscles, but the ache goes right through my leg, go figure?
Susan, the only thing I can tell you for sure is that if the pain is gone I do pretty well. I still suffer with jerks and movements that seem to be saying "you need to move", but most of that is apparent in bed, after I hopefully fall asleep. I'm in a combat zone after I hit the zzzzs, I will fight the sheets, the furry family members, my husband.....lol, last night I was told was bad.
The difference for me is an all out attack. Like a miagrane in my legs and arms, with the added bouns of all the symptoms and its my whole body. That is everything on 10 and meds don't always address everything.
The majority of my symptoms do not HURT me, the make me crazy to no end and I can injure myself by itching, but thankfully they are not all the time. I know the wet weather this weekend is making me achy, but it also makes me buggy, creepy crawly thing going on.....my left ear and my shoudlers, until bed, then it's just the whole body. I have just torn myself up at night the last couple of days.
My pain never travels, it's always in my legs, one shoulder that I injured too many times, and the rest of the symptoms just travel as they please. Yes, I move tons and have the ability to not move at all..... as long as I have shoes on.....those toes go 90 mph all the time.
Some day this will all be easy for us or maybe someone in the future. But I'm like you most of the time, most of this is mind boggling to figure out in one person, let alone as all.
We'll get there or help get the rest there.
Hugs to all
Lynne

[SquirmingSusan]

Here's what Dr B says, "A minority of people experience painful symptoms, which are often described as burning, aching, or simply painful. These symptoms may occur in addition to the more typical sensations. However, in some people the painful symptoms may be a result of some separate but associated problem, such as neuropathy (disease of the nerves)."

He continues, "The large variability of the uncomfortable sensations and the difficulty in describing them contributes to problems in communicating with physicians."

I get the burning, aching thing. A couple weeks after starting the Requip, I started noticing the aching pain coming on shortly after taking the drug at night. It got worse and worse, until I stopped taking it. Then it got horrible for several days. I'm happy to say that it has lessened a lot, but isn't quite down to what it was before the Requip.

Apparently the Requip messed up how my brain handles pain somehow. Some days I feel like such a human guinea pig.

It's funny, but whenever I hear the word "uncomfortable" (as in 'variability of uncomfortable sensations') I get a flashback to my first childbirth class. The teacher referred to childbirth as being "uncomfortable." Yeah.

Susan

[SquirmingSusan]

I think it's simple to see where many might find RLS painful after they reach a certain stage of progression. With mine it's the pulling and tightening of my muscles that just aches, deep inside my bones. Now, it's my muscles, but the ache goes right through my leg, go figure?

I wonder if, for me, it's the PLM that causes the pain? I get that sometimes when I'm just on the edge of falling asleep or waking up. It seems like it's the same muscles spasming over and over. I would think that would make the muscles sore after a while...

The majority of my symptoms do not HURT me, the make me crazy to no end and I can injure myself by itching, but thankfully they are not all the time. I know the wet weather this weekend is making me achy, but it also makes me buggy, creepy crawly thing going on.....my left ear and my shoudlers, until bed, then it's just the whole body. I have just torn myself up at night the last couple of days.

You know, the pain is almost easier for me to deal with than those other sensations. Those other sensations make me feel like I'm crazy. And when I say "pain" to a doctor, they know what I'm talking about. When I tell people it feels like I have worms crawling through my bones, sometimes they look at me like I'm nuts.

The weather has always seemed to affect me, too. I've always called it (the pain) "my rheumatism." I can predict weather changes better than the weather people.

I wonder if "they" will ever figure this all out.



Susan

[SquirmingSusan]

i have thought long and hard on the best way to describe the pain i feel in my legs. to me, it feels like someone is inside my legs and taking their fingernails and digging them into the muscles in my legs. if i get up and walk, i have to walk, do squats, and rub my legs till my hands are raw until my pain med kicks in. i only get twitches and leg jerks occasionly, no creepy crawlies, just what i described earlier. and in the morning it feels as though someone has taken a baseball bat to the bottom of my feet, my muscles feel drawn up like there is a string attached and has pulled them as tight as they can.

dee

Well, that's a great description, Dee! It sounds quite, um, painful!

Susan

[becat]

Susan I'm with you. The pain is not a great thing but it can be cut or knocked out, with what or how much, who knows? It can happen. LOL
However, when those attacks come after me I remember quickly what RLS can really be about. I hate to say this, but have before........the pain is much eaiser for me than the everyday symptoms.
As for the PLMD, yeah I have them and the pain med is suppose to help with that, but mine is only good for about 4 hours tops for me.....so I just take it and pray that I make it to those wonderful hours of 5-7 am asleep. I honestly never know that I am fighting the bed, the animals, the hubby, but I get a report the next morning if it's been rough. I've gotten a couple of reports lately. LOL But heck yes, plmds can make you sore and stiff in the morning, You've climbed a mountain all night.
Yes, the weather makes it worse. Rain or wet weather settles right in my thigh muscles. The broke ankle hurts, so it tells me too, but my thighs are very rarely wrong.
Thankfully, trying to explain my symptoms was easy after I learned how to talk about them without trying to phyiscally touch someone to explain. LOL I really lucked out that my doc had been working in the RLS community some 20 yrs, too!
hugs to ya.