If not restless legsthen what?

Discussion in 'Fibromyalgia Main Forum' started by thirkmom, Jun 12, 2006.

  1. thirkmom

    thirkmom New Member

    I have been under the belief that my legs jerking and the discomfort that drives me to the edge of insanity while I'm sitting or trying to sleep, is restless leg syndrome. When I saw my Dr. at the pain clinic last Friday I asked him for some requip. He asked me why I thought I had RLS so I explained the symptoms. He told me I couldn't have RLS because the drug of choice for it was Lortab and since I take oxycontin and it is stronger than Lortab he said there is no way I could still have RLS with all those meds on board. So I asked him what did I have then and he just kind of dismissed me. Nothing unusual for him. Any ideas suggestions etc? Thanks. LuAnn
  2. silkyblues

    silkyblues New Member

    I also take Norco. I have had RLS in my arm and legs for about 10 years. I know this sounds nuts but I take Vit. D 400 ICU's a day. Without it I go nuts. Now I can actually lay down and rest.
    I hope that is of some help. I do believe that you have RLS.
    Best wishes
    Jan
  3. cc0526

    cc0526 New Member

    Oh man... hello... pain clinic doc needs a refresher course in restless leg syndrome. Lortab or oxycontin will do NOTHING for RLS. Do you see a neurologist? RLS has nothing to do with the pain receptors that our pain meds would cover. It is a neurological condition caused by lack of dopaine or dopamine receptors... sorry it's late. It can also be caused by a couple other things like certain neuropathies, medications, vit/min deficiencies and anemia... anyway...

    Wow, way off. Can't belive he told you that. The drugs of choice for restless legs is Requip or Mirapex. I've tried both and the requip works wonderfully for me. No symptoms whatsoever anymore. Can't run out of my script though... comes back in a hurry if I run out. Go back and see your regular doctor, neuro or anyone besides this guy.

    Just print out any article from a RLS website to show him next time after you tell him how well your new RLS med is working for you :)

    Patty
  4. cc0526

    cc0526 New Member

    LuAnn,

    Just read your profile... I'm in Utah too and an RN too. Do you see anyone specific for your CFS? I've been referred to someone who actually has a website here in Utah (salt lake). I'm on a wait list, but my nurse practioner has seen her speak on the subject and loves her. Her name is Lucinda Bateman I think. (Also suggests Requip for RLS :)

    Patty
  5. thirkmom

    thirkmom New Member

    Guess what Patty? The doc that runs the pain clinic is a neurologist. I have a really difficult time with him. He had a really good PA that left and went to another pain clinic and so I've had to see him for the past 5 months. I haven't been thrilled. I tried to get my insurance to let me follow my PA to the new pain clinic. (I would pay out of pocket except any prescriptions from an out of network Dr. aren't covered). I filled out all kinds of paper work with the insurance co. and then ended up filing an appeal and was denied.

    I talked to the patient advocate and she suggested I try to get in to see Lucinda Bateman too. I was seeing her collegue Dr. Deborah Robinson, who had fibromyalgia also, until she drowned in a scuba diving accident 2 years ago. She was my Dr. for 2 years before the accident and I had so much confidence in her. In fact, she helped me get my disability. Her death was very devastating for her patients as well as her family. She was divorced and still had a couple of teenage girls at home still.

    When I saw (the nut) my internist last week, I told him my oxycontin wore off after 8 hrs. His solution was to divide my 2 doses into 3 and cut my Roxinol for BTP in half. So I've gone from 80 mg. every 12 hours to 40 mg every 8 hrs. Do the math. He's left me short all the way around and I'm dying. For what little relief I get from the 40mg after the 80mg it's a waste of money to even take the oxycontin since I'm still in pain. When taking the oxy 80's, and they wore off I took a Roxinol for BTP no big deal but he said we can get better coverage using the oxy every 8 hrs. NOT!! I questioned the reduced dose and next thing I know--I'm taking a piss test. I had my 2 year old granddaughter with me and we were in his office for 1 3/4 hrs. We were both at our wits end. By then I just wanted out of there.

    You can't tell this guy anything--I took several articles on Xyrem in for his new PA, who of course has been there 1 month and is on a 2 week vacation. His nurse put the papers in my chart for the PA and said, "Oh, that rep was just in here a few days ago." When the Dr. came in he looked at them for about 2 minutes and then pushed them back to me. When the nurse came back in I handed them back and said "Put these in my chart."

    I'm just about cooled down from seeing him last week but have been busy and stressed the past 2 weeks. I have been in charge of getting docents for the Daughters of the Utah Pioneers Museum here in Ogden. I have to go in an open and close the museum everyday but Sat. Do you know how hard it is to find 8 people for 12 days to go in and do tours? It's been graduation and vacation time for a lot of people. The only faithful dependable ladies are the ones over 80 and they wouldn't miss it. But because of their age their health is not good. They've had heart problems, knee replacements, strokes, been in the hospital for this or that, blind, I even had one that dared to die. Tomorrow is my last day. When that's over with, I'm finding me a new Dr. or pain clinic or whatever. I may even go back to my PCP (whom I dearly love and was a resident who was taught by Dr. Robinson--that's why he took me when she died and I was left high and dry) and wring his neck and ask him what he was thinking sending me to a pain clinc. Maybe if I throw myself on the floor and cry he'll write my pain meds. He already does everything else.

    Well Patty thanks for your reply. That's cool you're an RN too and live in SLC. By the way, on my way out of his office he handed me 2 bottles (samples of Requip 0.25) saying they're not going to help but here. A peace offering for cutting my oxy, I suppose. What strength do you take of the requip? LuAnn



  6. thirkmom

    thirkmom New Member

    Not so nuts. I really believe that supplements help with a lot of our ailments. I'll look into the Vit D. I need to have some new labs done. I looked at my last ones and it's been 15 months. Time to go to the Primary care Dr. I found that magnesium helps with pain. I'd been having some increased pain this past winter and I was craving sweets, especially chocolate until I thought I was going nuts. While in the hospital for surgery in Jan. of this year they did my labs and wouldn't even discharge me until they gave a bag of IV magnesium. Come to find out my magnesium level was next to non-existant. When I got home I looked up magnesium deficiency and craving sweets and chocolate were a symptom. Within a week after the infusion my cravings were gone and so was a tiny amount of pain. I think you're right on. Thanks for your reply. LuAnn
  7. cc0526

    cc0526 New Member

    Wow, I can't believe you got stuck with such an ignorant doc... must be especially hard since you have had great care in the past from people who understand the disease. Have you asked your pain doc about methadose for the pain? We are using that a lot in our facility (Skilled nursing) for chronic pain and it's working wonders. It lasts a long time too.

    The requip dosing usually starts at .25mg and titrates up to as much as 3-4 mgs. I take 2mgs QHS. I was taking only 1mg and I thought that was working great until a sleep study said I was moving all over the place. I have several patients taking this, including some parkinsons pt's and they have had great results too. Of course it will only work for those whose RLS is caused by the dopaine thing in the brain so if your RLS is caused by anemia or something else it may not work. The neurologist I see and who my patients see is Mohammad Taher in American Fork. (I live in Lehi and work in AF) I worked for a few years up at primary children's before we moved down south.

    So sorry your having trouble finding help for the museum, wish I could help.

    I don't know, right now my PCP is doing great with me. I really did print off Lucinda Bateman's tx's and brought them in to her. I've been taking Ritalin for about a month and it's saved my job for sure. I was taking provigil but had horrible migraines and insurance wouldn't approve to pay, but the ritalin is working great for me. I'm still sore all the time and have to be very careful to rest a lot but I am managing to keep working for now and be a somewhat normal mom and wife.

    I'd love to give you my e-mail address but I don't know how we can do that on this board without getting in trouble, any ideas?

    Oh... on the requip... it's titrated up by week.. .25 x 1 week, .5 x 1 week etc until you get to the therapeutic level that works for you. Hope he'll give you more samples. Or most primary physicians know enough about RLS to give you a script I'm sure.

    What pain clinic do you go to? I haven't gone to one yet as my doc is helping a lot, would like to change from the lortab to methadose though and she hasn't heard much about it and is scared to prescribe it. I'm afraid I've been taking the lortab too long and it isn't helping as much. I just need one more, like the methadose so I can swich back and for every couple of months so my body doesn't get too used to one.

    Well I hope you get some relief soon... there is not much worse then the RLS when your exhausted to boot. I personally would rather be in pain.

    Hope to talk to you soon.
    Patty

  8. mme_curie68

    mme_curie68 New Member

    I was having "restless legs" going to bed at night.

    I was supplementing calcium, so I knew it wasn't a calcium deficiency.

    Then, DUH, I remembered magnesium is important in muscle transport as well and that a magnesium deficiency could cause the same problems.

    I am on a diuretic for BP so that can cause magnesium deficiency.

    Started taking 500 mg Magnesium BID and no more problems.

    Hugs,
    Madame Curie
  9. thirkmom

    thirkmom New Member

    I would like to get your email address also but I don't know how we could exchange them. I'm not that computer savy and I only come on her occasionally. I've been here pretty steady for a month now.

    I used to work at a skilled nursing facility before I took my disability. I struggled with being a floor nurse and thought if maybe I could do 8 hrs. instead of 12 I'd do better so I took an Assistant of Nursing position. That was stupid. They put me on salary and I was spending 60 hrs. a week there. The stress was the thing that finally took me out. How can we find out how to exchange email addresses? I gotta go for now. Have a great day. LUAnn
  10. cc0526

    cc0526 New Member

    Our managers end up doing the same thing, working way long hours so yeah, I think I'm better off on the floor, at least I have a few days off. I almost took a manager job thinking the same thing you did but I didn't know what was wrong with me yet and could hardly get through 3 shifts a week never mind 5. The stress definitely has taken its toll. I had a really bad death with a kid at PCMC that emotionally did me in. Then the skilled nursing isn't much better with the paperwork and state regulations, had our state inspection last week and I had to work 6/7 shifts. I knew it would through me right back into a flare but there wasn't much I could do.

    I'll post to see if anyone can answer how you can give out e-mails "leagally". I am on the boards a lot more now since I got my laptop. I don't have the energy to both work and sit out at the computer anymore, but the laptop has been wonderful.

    Patty
  11. thirkmom

    thirkmom New Member

    I saw your post asking how we can exchange e-mail addresses on the message board tonight. We'll have to set up a time to chat. I'm not very savy so I don't know how to get into other chat rooms. I'm pretty tired tonight so I better get som sleep. Let's keep in touch until we figure this out. Good Night. LuAnn