LYRICA??

[badnights]

Doety, I ditto GG's last paragraph.

The little green book, if you have it, speaks of the opioids relieving symptoms, as does the RLS Foundation medical bulletin which I'm sure you have. It's interesting that you ask for more information on that, because I just finished gathering a set of papers together for my doctor, that mention that opioids stop the RLS/WED sensations. I can type up some quotes from the papers.

One of them is about an experiment on rat-brain dopaminergic cells. They showed that the brain cells die from lack of iron, and that opiates protect the cells from iron-deprivation death.

Another paper mentinos that opioids stop certain reflexes that are inhibited in normal people but run wild in RLS/WED patients.

Another paper describes an experiment on RLS patients involving a substance that binds to opioid receptors. They note that severe RLS/WED is correlated with greater release of naturally occurring (endogenous) opioids in the parts of the brain involved with pain.

A quote you might like:
"Restless legs syndrome (RLS) leads to abnormal limb sensations and period limb movements (PLMs). Due to the excellent responses to treatment with dopaminergic and opioidergic agents, an involvement of both dopamine and opioid receptors is highly likely. ......
It can be assumed that therapeutical opioidergic influence on RLS largely resultsfrom a spinal action of opioids"

Over and over I see articles that acknowledge that opioids are therapeutic, and stop the RLS/WED sensations.

[jittery girl]

I take Lyrica twice a day, in the morning and in the early evening (5pm) along with 100 mg of Ultram (tramadol) It always works, as long as I take it right on time. If I don't, at about 8pm the pain starts, with the uncontrollable legs and arms. What I am desperately looking for is a back up plan. Something to take if I screw up or for some reason it does not work. Will it work to take more tramadol? If so, how much? I am afraid of being so desperate and crazy in pain I accidentally overdose on meds. I live in a state with no medical marijuna, but I would grow my own plant if a few puffs would save me. Any info is most welcome!

[doety]

I"m so sorry about your pain and I can only imagine how frightened you must be. I'm sorry I don't have answers for you; I'm hoping that someone else on the board will. I can only tell you that I use marijuana sometimes, but not for pain. After I go down my list of strategies for dealing with RLS, I'll take one puff of a joint. That's bad on your lungs and I'll soon try the "edibles." Please be so careful. I'm in a state where they have "dispensaries," and I have a license. But in some states, you could go to jail where you don't get anything for your pain. I hate it that our laws are so backward. I don't know your history, whether you have a doc who's reasonable and I don't know if this is possible, but maybe he would give you those pills with THC, that don't make you high, but help with pain. Lots of people on this board know much more than I do about good drugs for RLS. I feel awful for you and I hope you'll find a solution.

[badnights]

Jittery Girl:
I am not sure if I remember correctly but Tamadol is fast-acting, isn't it? So it should work for when you need something NOW. If symptom breakthrough is common, for whatever reason, even because of taking meds late, you could ask your doctor for extra Tramadol to deal with this on an ad hoc basis. Guesstimate for him how often you might need it (3 times a week? every day?).

There's another option, which I'm using, but it's unorthodox and you have to be careful not to use it every day. I have Sinemet (levo-carbidopa 25/100) and I take a pill as needed for daytime breakthrough, or nighttime when it's too late to add any more of my main drug, hydromorph contin, which takes 2 hr to kick in.

If you did try that, start with a half-pill and if that works, no need to increase. Since it's a dopamine drug, it's best to get your ferritin up over 50 or 100. I've been using Sinemet to cover off breakthoughs or to allow a daytime nap for a year or so now, but not often because I was so scared of augmenting. Still, it works like a charm and nails the squigglies dead within 15-30 min.

[jittery girl]

Badnights;
Thanks for the info. For some reason, when I take my meds "out of order" or too late, they won't work at all. I recently took my 8 pm drugs at 5pm by accident. That left the lyrica and ultram that was supposed to be taken at 5pm. I went ahead and took them at 8pm, and they did not work. I got the creepy feeling at 8:30pm, and from 9pm to after midnight I was pacing the floor and shaking out my arms constantly. I could not sit still for more than 60 seconds. It was walk, walk, walk. Then rub the arms. Moan in pain until finally at around midnight I could feel the sensations fading and sleep taking over.
I did take some clonapine. it does not help the pain or creepy feeling. but I think it does help me deal with it.
This is why I need an emergency back up. It sounds like some home grown pot may be my most "natural" and easy to deal with option. I don't like smoking anything, but it sounds like just a few "hits" does the trick. I haven't smoked pot since high school, willing to give it a try if it keeps the demon away. I also happen to have a huge basement where I can grow a single plant undetected. My friend's son is willing to coach me through the process!

[Chipmunk]

Does smoking weed actually help the WED or do you just not care as much about it? I have never smoked it in my life, but god damn I will start if it gets rid of this!!

[doety]

I'm not sure I'd know the difference. I'm sleeping well right now (YIPEE), so I don't need it. But when I've gotten crazy, up for hours, tried all my usual remedies (hot showers, etc.), and I take a puff, the WED stops. You know how you think it will never end..and once you've walked for hours, it's like your legs don't know what else to do. That's when I need it and take it.

Please, please be so careful with the Klonopine. That's a nasty drug you get addicted to and so hard to come off of. It was the first drug most docs used for RLS, they gave it out like candy. Ten years later, lots of us were still taking it, even though it did no good. It took me a year to get off of it, and when I totally stopped (I had just been taking a tiny dot of it), I went into a bad withdrawal for a month. I wasn't having spasms or anything, but I was so depressed, felt sick, etc. Now I'm about three months away, and feeling much better. If you're using Klonopine to feel better -- there are much better alternatives. I'll bet a doctor could point you the right way.

[badnights]

jittery, probably your meds don't seem to work at all when you take them slightly off-schedule, because they' barely enough to cover off your symptoms. Once the symptoms get going, it takes more med to stop them than it would have taken to prevent them happening.

If you smoke weed to stop the symptoms - btw, doety hasn't noticed this, so either it's not universally true or she's luckily got the right kind every time - but I and my son have noticed the two main varieties out there have opposite effects. Anything that's said to give you a "body-stone" is something to avoid, since with us it makes our symptoms worse. If it's said to give a "head-stone" , it's the kind that will help. The body-stone variety is made of Indica, the cerebral is Sativa, so you want Sativa. Problem is, many of the available varieties are interbred mixtures, and depending on the sellers where you are, you might not be told , or get a choice, what variety.

[doety]

Absolutely! I forget about that. I cannot keep the names straight, so when I go to the dispensary I just ask the guy which kind relaxes you and helps you sleep --- and then I get the opposite kind!!

[badnights]

Absolutely a great idea! We're opposite, as usual! For people without WED, the body-stone one (Indica) puts them to sleep! For us, it makes our legs freak out!

[debbluebird]

Lyrica put 50 pounds on me. I started gaining weight and couldn't get it stopped until I went off of it. Then the weight came off. Did't really help my RLS, contrbuted to memory loss and loosing my job. Good luck

[jy13131]

Lyrica put 50 pounds on me. I started gaining weight and couldn't get it stopped until I went off of it. Then the weight came off. Did't really help my RLS, contrbuted to memory loss and loosing my job. Good luck

I went off lyrica because it definitely caused me to eat more than usual, made me feel like I was falling when I closed my eyes, created a new level of stupidity I'd never previouly reached......and it didn't really take the WED away.

[jittery girl]

To update my Lyrica use: I have stopped taking Lyrica because it does not help the RLS (Tramadol works great for me) and I have gained a lot of weight. I have not had withdrawal symptoms, other than not falling asleep as well as I did. I will wait out this side effect, attempt to calm myself for sleep rather than take any more meds. I am now taking only tramadol for RLS and lexapro for depression.

[doety]

Glad everyone is adding updates. What would we do if we couldn't learn from each other?
I stopped taking Lyrica because of the "mental health" problems. From mild depression to something that happened one night that scared me. I've never felt like that before and don't want to again. Don't think it helps me, so why add another pill. I'll post if I lose a bunch of weigh!

[ViewsAskew]

Glad everyone is adding updates. What would we do if we couldn't learn from each other?
I stopped taking Lyrica because of the "mental health" problems. From mild depression to something that happened one night that scared me. I've never felt like that before and don't want to again. Don't think it helps me, so why add another pill. I'll post if I lose a bunch of weigh!

I had what might be a similar reaction to Topamax. Good thing there wasn't a cliff nearby - I'd have jumped. I was too tired to go find the cliff, the only good thing about it.