A newbie here, so I'm just kickin' this out there.

BeanieLee · Post by **BeanieLee** » Thu Sep 21, 2006 1:38 am

Oh Emily I'm so sorry to hear that you've had such poor luck with treatment. I wish Lyrica was my miracle drug but unfortunately nothing has proven to be that beneficial besides the narcotics and those are limited to me. The Lyrica does help me sleep and I value it so much for that but that's the most notable benefit I've felt is just the sleep. I'm in a lot of pain in the morning and throughout the day and I only have enough narcotic to treat either the morning or later in the day so it's pretty brutal. I hope that we all find a wonder drug and have access to it. And feel free to vent to me any time you need. My ears are always open to you. Have a great night and I hope you... and all of us sleep as well as possible. Good night all.

BeanieLee · Post by **BeanieLee** » Thu Sep 21, 2006 1:41 am

Also, Emily have you tried taking an Iron supplement. It's definitely worth trying. I take a multivitamin with 100% dv of Iron. It's no miracle for me personally but I continue to take it just in case iron deficiency is a contributing factor and I've heard that it's worked wonders for some. Good luck.

cornelia · Post by **cornelia** » Thu Sep 21, 2006 11:25 am

Emily,

I experienced the same thing: when RLS hit me, it was immediately, like you, in my legs, arms, torso and 24/7. I too think that I belong to the bunch that cannot be adequately treated (big sigh). All of a sudden it seems that my meds don't do anymore what they have to do and I feel I am back to square one. I know that goes with this disorder. I am homebound again and I hate it.
The only thing I have not tried yet is methadon (am already on Tramadol). It is scary to think that meth will not work for me too.
Emily, we have to keep our hopes up, but I agree that it is very difficult from time to time.

Corrie

Anonymous · Post by **Anonymous** » Thu Sep 21, 2006 12:29 pm

BeanieLee · Post by **BeanieLee** » Thu Sep 21, 2006 3:16 pm

Emily, I experience the symptoms in my legs exclusively but the pain and discomfort came on very quickly for me too. In the span of just a few weeks I was miserable. i'd wake up and immediately start rubbing my legs vigorously, which I still do everyday. They were so tight and achey and the second I opened my eyes I was miserable. It seemed to come out of nowhere. Thinking back I see that I've always had other symptoms like the urge to move. I could never sit still comfortably in any position for more than a couple of minutes and my legs would sometimes jerk out of nowhere like a spasm and I've always felt a little tingly or wormy sensation. but I never knew what rls was and i was never bothered much by any of that. Just figured it was normal! But in the last year it's become painful and really uncomfortable and that came on very suddenly it seems. I'm taking an iron supplement now and it's not doing much but I figure it's probably better to take it than not so what the heck. The Lyrica helps me sleep and the narcotics make the rls go away completely for the very short time that it feels effective. I've also heard that supplementing magnesium and b12 can help. Im not sure anyone will find a perfect drug or therapy but we have to keep trying! Although my dad did start taking miraplex and says he feels great on it, has no symptoms on it and absolutely no side effects. Wish I were that lucky, mine's more severe. good luck : )

Post by **ViewsAskew** » Thu Sep 21, 2006 3:39 pm

Beanie - just a note of caution. I don't recall if you had an iron test - especially a ferritin test - if you haven't, please have one before you continue taking iron. Hemachromatosis is a nasty condition caused by too much iron. People with RLS often have low iron, but not always. Having that test is really a good idea :-)

.

BeanieLee · Post by **BeanieLee** » Thu Sep 21, 2006 4:11 pm

Thanks Ann, unfortunately i'm uninsured at the moment so I can't get many tests but I will ease off of the iron just in case. Take it every few days or once a week or something and see if that changes anything. It hasn't seemed to help my symptoms so It's not like I'll really miss it if I back off a bit. Thanks for the concern : )

Anonymous · Post by **Anonymous** » Thu Sep 21, 2006 5:18 pm

BeanieLee · Post by **BeanieLee** » Thu Sep 21, 2006 6:14 pm

no problem Emily. I think hearing eachothers personal experience is what helps us know eachother and helps us find comfort in our own experience. I'm sorry to hear how sudden your onset was. I can imagine how scary that would feel. Mine was the same with remembering the urge to move a long time ago but it was also for me, nothing I would seek treatment for. It was just irritating sometimes. Your disliking of hats made me think of something too. I've never liked to wear socks and shoes. I go barefoot absolutely every chance that I can get away with it. I love the summer because i can wear flip flops and i live in them (the least amount of shoe possible) and I can't stand wearing socks because I hate the way the part touching my leg feels. When I'm wearing socks I'll grab the elastic top part and move it to a different place on my leg every 20 minutes or so because it feels as if it's completely cutting off all circulation to my legs, even if it's touching me very loosely. I've always felt that way and that's something I've never connected before but could very well be a part of the rls. My calves are especially sensitive and when i'm laying down if my pajama pants are scooted up too high and touch my calves at all it drives me CRAZY and I yank them down immediately. I can't stand things touching my legs like that. yet it feels good to squeeze them so hard they might possibly bruise. Ha! But rls is such an enigma that I think it's important to pay attention to all of these strange little things. Information from patients is the only way the medical professionals can compile information and formulate methods of treatment. So, you're no broken record to me. I like hearing about the little differences and similarities we all experience in the more personal ways. : )

BeanieLee · Post by **BeanieLee** » Thu Sep 21, 2006 8:58 pm

Well I just called my dr because I ran out of dilaudid and again he "urged" me to get in touch with a pain specialist or primary doctor asap. I also found out that he can't refill my dilaudid so I'm back to hydrocodone at least until I see him next if not for good. That sucks. I hate taking the acetamenophen that goes with it when I don't need it. You can only fill a Rx for dilaudid if you have the physical prescription in your hand, no faxes or call ins. I called A primary doctor to see if she would be willing to discuss my information with me and go over some treatment options with me as I have no insurance right now. Her office is closed so hopefully I'll know tomorrow weather she turns out to be a good thing or not. Ok, just needed to whine a little bit. Thanks for listening.

becat · Post by **becat** » Thu Sep 21, 2006 9:53 pm

Hi everyone,
I finally have gotten the chance to read this thread and I thought I'd share what we already know, but that I got a doctor to say out loud......

At one of my meetings this year I had a wonderful neurologist that specializes in movement disorders, he also holds a doctorate in Pharmacology. This was the main reason I asked him to speak at the meeting. Let's face it for many of us RLS all comes down to relief and treatment, most days!
What a brain this man has, his thought process was so amazing to me that I had him twice in a row for my guest speaker...

I asked, point blank:
"#1. If an RLS patient has found no relief following the Algorithm of medications and we know that pain medications work for many people, why is it so hard to get these meds. ?"
#2. Why is that neurologist seem to resist giving pain meds more so than other doctors?"
Answers:
#1. The DEA makes sure that all doctors understand that prescribing pain meds is always going to bring up some type of red flag, and repeated prescriptions could cause me or the doctors license to practice. So this is apart of the War on Drugs, and it gets better. ....Jumpyowl told us this over 2 yrs ago. Anyway, he went on to explain that there are only a handful of doctors that are willing to risk their practice for the sake of pain meds.. Bold and blunt I thought.
Answer#2. Neurologists tend to refer people to pain clinics for long term meds. and save those prescriptions for the surgeries and short term users. Again, the DEA makes sure they understand all the time that they are watching and counting.
Basically the government is able to dictate our treatment in a whole other way! Just like an insurance company telling a doctor he shouldn't run a certain expensive test or use certain procedures, because of cost.....LIKE they have been to med school and some pencil pusher is making the rules!
This doctor was not afraid of the DEA, but admits to being careful to not step over the line. Easier to send us to someone that has the room to give us those meds with refills.
This is one thing that really hacks at me. Why don't our own doctors help us fight the system? Would you help if it meant your ability to make a living? UUUUUUUggghhhhhhh! I can't say to any of them that I blame them, but I think it's wrong for doctors to let an insurance company decide testing and treatment and to let the government do the same as well.
Sorry I'll step down now.

Anonymous · Post by **Anonymous** » Thu Sep 21, 2006 10:34 pm

becat · Post by **becat** » Thu Sep 21, 2006 10:59 pm

Hi Em,
You know I'm with you on everything you said. My GP is always a wonderful doctor for me and my family, but when he sees what I take everyday.....he told me that he could never take over my care because he won't even write those types of prescriptions either.
Heck of a note, to think I started with him in his first some 20 yrs ago. I think he knows me and in my file, he could see that I have always turned down pain meds for any other type of illness or injury, until about 5-6 years ago when I injured my shoulder and the RLS moved right in to make it worse, after I had gone to an ortho to make sure surgery was not needed. The ortho had me on PT for a couple of months and I just couldn't take it anymore. But I never asked for pain meds before in over 15-16 yrs before.
I.E. when I broke my leg/ankle I took vitamin c and calcium instead of pain meds......Go figure! I could have gotten anything then but did not need them.
It's an awful subject for me, this topic, I just get red hot and angry! When will we have someone in power to advocate for us? When?
Tell me who will be willing to step for people like us, the Fibro people, the RA people........I'd fight with them if someone would help us get our word out and understood.
Hugs to you girl!

Post by **ViewsAskew** » Fri Sep 22, 2006 2:08 am

Add many other people to your list - cancer patients, people with chronic back or joint pain, and the list goes on. ANYBODY in pain has to fight to get what they need. It's downright unhumane.