Pain associated with RLS/WED

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rlsidaho
Posts: 56
Joined: Tue Jan 03, 2012 10:16 pm
Location: Boise, Idaho

Pain associated with RLS/WED

Post by rlsidaho »

I know that there are a few posts that have discussed the pain that can sometimes accompany RLS/WED. My specific question is whether or not anyone has had leg pain that seems to move around within a few select areas. For example, in my right leg (which is the one that predominantly has the associated pain) depending on the day/time of day, I may have pain in my lower calf, the outside front if my calf along the muscle next to the shin bone, the upper hamstring on the outside of the leg, and sometimes in my knee or ankle joints. There doesn't seem to be a pattern, it just moves around to different places and feels like a combination of severe growing pains and bruising/burning. This is in addition to the uncomfortable symptoms that many call the creepy-crawlies...

I have also determined that for me, exercise seems to make the pain worse, and/or the medication less effective (hydrocodone). Has anybody else experienced this? Would love to hear from anyone that has. I go to the Mayo Clinic in 7 days to meet with a sleep and movement disorders specialist, as I have run through all of the typical medication without success and need to find something more permanent than the hydrocodone, as my symptoms have never reduced from 24/7 since augmenting on the dopamine agonists several months ago. Do people ever go back on D.A.'s after augmenting if their symptoms continue around the clock? Any other medication suggestions? Thanks in advance to anyone that can offer some insight for me.

rthom
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Joined: Sat Dec 31, 2011 3:03 am

Re: Pain associated with RLS/WED

Post by rthom »

Wow, sounds like you are having a rough time. I was wondering is you migrating pain in different spots at about the same time or in different spots at different times?
I have a large variety of pain in different areas but not as much as you. I also take Hydromorph. I was wondering before if my meds were creating some of the discomfort--did not come to any conclusions on that as it just seems different if i'm off them. Don't imagine this helps much but anyway, take care, hope you get it sorted out.
One last thing I've come to the conclusion that i may have to stay on the hydromorph pretty much for life unless they find something better--I don,t do well on the requip etc. either. I don't like it but do have to consider the possibility--it makes my life easie if i do. Just a thought.

ViewsAskew
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Re: Pain associated with RLS/WED

Post by ViewsAskew »

I don't have pain and haven't a clue how it feels - i.e. moving around or staying in one place.

I hope you get some answers from the specialist.

Per the agonists, some of us have gone back to them after augmenting. I have, but do not take them every day. I alternate them with a strong opioid (methadone) to prevent any more augmentation.
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.

Polar Bear
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Re: Pain associated with RLS/WED

Post by Polar Bear »

I don't have any pain with my symptoms and can't imagine how awful it must be together with the
creepy crawlies. Just want to wish to well on your visit to the Mayo Clinic.
I hope that it will be productive and positive.
Betty
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

rlsidaho
Posts: 56
Joined: Tue Jan 03, 2012 10:16 pm
Location: Boise, Idaho

Re: Pain associated with RLS/WED

Post by rlsidaho »

Thanks all. A question for "Views". How do you do on the methadone? I have a feeling that this is where I may be headed. Can you drive while taking it? i don't know anything about it other than it seems to be a last resort for many of us and I have seen many posts by people who swear by it for the stage at which i find myself.

ViewsAskew
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Re: Pain associated with RLS/WED

Post by ViewsAskew »

rlsidaho wrote:Thanks all. A question for "Views". How do you do on the methadone? I have a feeling that this is where I may be headed. Can you drive while taking it? i don't know anything about it other than it seems to be a last resort for many of us and I have seen many posts by people who swear by it for the stage at which i find myself.


To me, methadone is like taking nothing but a slight mood enhancer that energizes me - like a cup of black tea. It never has made me tired and I am in no way impaired.

BUT, when I take it daily, after a few days, I'm tired during the day when I'm not taking it, and energized at night when I am taking it. If I took it starting in the morning, that probably wouldn't have happened, but I only wanted to take it in the evening.

So, alternating the Mirapex with it ensures I don't get so lethargic.

For what it's worth, some people do not get the lethargy.
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.

rlsidaho
Posts: 56
Joined: Tue Jan 03, 2012 10:16 pm
Location: Boise, Idaho

Re: Pain associated with RLS/WED

Post by rlsidaho »

Thanks for the feedback. With the symptoms hitting me all the time I am trying to not only figure out what is best to take but also how to manage daytime/nighttime symptoms. I don't see any difference in my symptoms between to two. Btw, I think you also asked me about my leg pain locations. Generally it only focuses on one area at a time. Sometimes my calf, sometimes my thigh... This can occur all in the same say but generally at different times.

dogeyed
Posts: 441
Joined: Wed Apr 21, 2004 3:06 pm

Re: Pain associated with RLS/WED

Post by dogeyed »

Hey RLS IDAHO! I have the painful 24/7 kind of RLS. However, I do not feel the pain above my knee. It is in my right calf. I have actually seen the muscle fibers wiggling all around in different directions in the calf, in one general spot. I take Tylenol Codeine #3 for my RLS, I take it four times a day, and this controls my symptoms. Could be you are not getting your hydrocodone often enough thru the day, because whenever I run low on my meds sometimes, my legs start bothering me before the day is out. Also, could be if you're going to your meds four times a day, and still no relief, then the amount of hydrocodone may not be enough for you and needs to be increased.

As for activity and exercise and its effect on my RLS, I do find whenever I am on my feet for too long, or exercise too much, or anything out of the ordinary, my legs indeed break thru the 30mg codeine and they hurt and get restless. So, if you are a person who runs regularly, for example, to get your exercise, then I should think more medication is needed. I have tried all the other categories of drugs for my RLS, and none of them worked. Only the opiate category stops my symptoms, even tho what I take is quite mild.

Now, I also have a bad back. Fortunately, I do not have sciatica, which I believe is where a nerve root in the lumbar spine is impinged on, and that pain will go from the back on down the thighs and into the lower legs. But with my back pain, I feel it does have something to do with triggering my RLS at the outset, because it was after a fall where I wound up with a cast and had to limp a lot, that it threw my back out, and then I had RLS. And while my back improves here and there, or gets worse for a while, I still always have the RLS, but as I said, the mild opiate I take prevents it from bothering me, even though I don't limp anymore. That all happened back in 2003. So, while I think there's a connection between my RLS and my back, at least as far as what made it start up, I am not as sure if it is the reason I still have it. The way RLS works is, once you have it, you will always have it.

But your RLS, when you talk about pain in your thighs, maybe someone else with RLS can jump in here about any similar experiences, but my understanding is it starts in one leg in the calf and that's where all the discomfort is. However, it can jump into different parts of the body! Before I was diagnosed and treated with RLS, the pain and muscle jerking went into my other leg, and then it got in my arms, and one day (and still now sometimes) my whole body will jerk so hard I nearly come out of my chair. But I just didn't know it would go up the leg; rather it jumps from one lower leg and then includes the other, then gets in the arms where they will jerk, and then the whole body. But as I said, someone else may have more clues about where theirs tends to be.

Therefore, COULD BE what you are experiencing may not be RLS, but could be it not only originated in your back, but perhaps it is the nerves in your back that are affecting the way your muscles and pain treat you. If this were the case, COULD be the medicine treatment would be similar, hydrocodone or something stronger depending on the situation, but you are already taking an opiate drug, so I'm not sure why it's not helping the RLS or RLS-like symptoms, whichever way it turns out, whether it's a back problem and/or RLS. So, I have to return to the idea that if it's in your back and/or RLS, you need to take your hydrocodone more often and at a higher dose, in order to get relief, altho some back problems take much more powerful medicines, physical therapy, maybe a back brace, and all the way up to surgery. As for if it is indeed your back, an ordinary CT scan, or even an inexpensive black & white x-ray is better than nothing, for visualizing what is going on back there. Might show a bunch of ruptured discs, fractures, deformity in your lumbar spine, to where once a neurologist was to ask you a bunch of questions and examine you physically in his office, and if he were to find out you have this sharp pain that goes from your back down into your leg, then he would perhaps say you either have a back problem only, or you have a back problem and RLS.

Since you are going to the Mayo Clinic for these other tests, I would most definitely try to get in to see a neurologist while you are there, he can order some imaging studies of your back IF you think that is a possibility... I mean, either your lower back hurts you or not. And if the nerve roots that might be affected by a bulging disc are at certain levels of the lumbar spine, well each vertebrae affects the nerves in different parts of the legs, I have a picture in a medical book I have that shows just how, say, L-5 will go right straight down the leg and perhaps affect the nerves alongside the right of the lower leg and affect the last two toes of your foot, just as a made-up example. Those would be my thoughts, hope they help clarify. GG
"It's not how old you are; it's how awful you feel."

rthom
Posts: 1530
Joined: Sat Dec 31, 2011 3:03 am

Re: Pain associated with RLS/WED

Post by rthom »

I have pain and nerve conduction stuff going on from both my backa nd from the WED. My legs (and arms sometimes) Hurt and twitch incessantly as well as charly-horse badly if i don't have my WED under control. I can also see the muscles twitch away under the skin but this follows a very distinctive pattern for me. Far worse at night!! I also have pain and heaviness in my legs and feel like someone has threaded a needle through my toes and pull on them one at a time (ouch, and this is back related), a feeling like water is running down my legs or butt, also i feel like i'm standing on a pile of cotton baton--a weird feeling in my feet.then i have the general sore muscles from the lower back down, and bruised feeling i get from bad sessions of WED (from the muscles cramping and tearing repeatedly). It stays for several days till the muscles heal up.
Hope this helps.

dogeyed
Posts: 441
Joined: Wed Apr 21, 2004 3:06 pm

Re: Pain associated with RLS/WED

Post by dogeyed »

Hey RTHOM, that standing in cotton thing sounds to me like peripheral neuropathy, which usually comes from back issues, which I hear you say you got back and WED problems, like me. Those muscles twitching in your leg suggest you may need better medicines, I forget what you take. The charly-horse thing, I assume is going on in your feet, and if so, that's where elecrolytes come into play and by eating foods with various minerals in them, it can ease that up. I forget which ones they are, tho. Sorry to move this discussion around from its original point, but I just wanted to try to help you a little RTHOM, so you won't have quite so many diff things happening in your legs at one time. I remember the six months to a year before I finally sought treatment for my calf hurting and twitching and keeping me up at night, I thought I would go around the bend, all this junk was overwhelming me and I couldn't think straight and was quite frustrated and angry. So, that's why I brought up a couple things for you, especially since we share similar symptoms on account of having both back and WED problems. GG
"It's not how old you are; it's how awful you feel."

Love7
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Joined: Thu May 31, 2012 6:18 am

Re: Pain associated with RLS/WED

Post by Love7 »

Hi there, I have been taking methadone, 30mg a day for my severe rls for two years now and it has helped me very much with little side effects. It doesn't make me tired at all. I think it is a good option for people with very severe rls that have not had success with any other medicines...

rthom
Posts: 1530
Joined: Sat Dec 31, 2011 3:03 am

Re: Pain associated with RLS/WED

Post by rthom »

I think it's great that the methadone is working for you without too many other side effects from it, way to go. Just a reminder for those thinking of trying it, if you have breathing trouble it's not a good drug, otherwise i've heard lots of othr folks it works for too. Can I ask how it is split up in your day? Dosage, time etc. Have a good night! :P

rlsidaho
Posts: 56
Joined: Tue Jan 03, 2012 10:16 pm
Location: Boise, Idaho

Re: Pain associated with RLS/WED

Post by rlsidaho »

Mine (different person from above-I started this discussion) is 5-10 mg three times per day and it's a wonder med...

debbluebird
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Joined: Mon May 21, 2012 3:27 pm

Re: Pain associated with RLS/WED

Post by debbluebird »

Hey risidaho, how did the Mayo Clinic visit go? Are you any better? Did they change your meds. Hope you are feeling better. DEB

rlsidaho
Posts: 56
Joined: Tue Jan 03, 2012 10:16 pm
Location: Boise, Idaho

Re: Pain associated with RLS/WED

Post by rlsidaho »

The Mayo Clinic was NOT helpful at all. In fact, the dr that saw me gave me horrible advice. The advice was simply, "to stop all meds for 3-6 months and then reintroduce the dopamine agonists that I augmented on in the first place." The only good thing that came as a result of my visit was that I reached out to this discussion board in desperation and was given the name of a doctor in Los Angeles that has been nothing short of a godsend...

For those of you who rely on meds to control your symptoms, you know what horrible advice the Mayo advice was.... The thought of going even one night without meds gave me panic attacks. Clearly, that dr had zero experience treating severe RLS/WED. Since seeing the dr in L.A., I have been able to reduce my symptoms by about 90% with manageable side-effects, and am back to a fully functioning life...

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