>>>> My Very First Post <<<<

[allegra]

Hello Everyone! I'm Allegra...this is my first post. I think I've had RLS my whole life, or since I was 12 at least. I'm 33 now, and it is becoming unbearable. I think when I mentioned it in my teens it was passed off as 'growing pains', and then as an adult I called it 'leg twinges' and no one really took me seriously, just thought it was a quirky 'Allegra thing'. I didn't ever bother taling to a Dr....I guess I was afrais they would think it was all in my head? So I didn't even know RLS had a name until I moved to America from Canada 2 1/2 yrs ago and saw a Mirapex commercial on TV. I was pointing at the TV and screaming at my poor husband "THAT SOUNDS JUST LIKE ME!!! THAT IS EXACTLY WHAT MY LEG TWINGES ARE!!"

Well, having no medical insurance, I haven't been to a doctor at all since moving here. I 'deal' with my legs in the evenings by walking around, stretching, squirming, kicking, sticking my feet under my husband's legs in bed and driving him nuts LOL, and sometimes hot baths. Nothing really helps but getting up and moving. Before moving here I had a very busy social life, I was single and out every evening until late...my legs were not a huge problem, they mostly just ruined going to movies and travelling. Basically, I didn't rest alot in the eveings LOL. Since moving here (I married an American) my lifestyle has become very different. My husband and I stay home almost every evening, and from 7:00 on we watch TV, lots of films, and I read a great deal and well as studying. As you can imagine, restless legs don't 'fit in' with my now VERY RESTFUL lifestyle!!!

I would say my legs 'act up' enough to be disruptive maybe 3 -5 times a week, until 2 months ago when I started an exercise program. I run on my elliptical a min of an hour a day, and since starting that my legs have become a thousand times worse. EVERY NIGHT they are unbearable, almost as soon as I sit down or lie down to rest. The 'twingy' feeling is also much worse now, much stronger and some nights they keep me from falling asleep, which has never been much of a problem. I have read online now that exercise can cause a worsening of symptoms. OH GREAT.

Our evenings are ruined, watching movies is a trial to endure, and reading no longer enjoyable. Some nights I end up crying or yelling and pounding on my stupid legs with my fists just wishing the horrible feeling would GO AWAY!! I have made an appointment with a neurologist for two weeks from now in a nearby city who is willing to work out a payment plan for people who have to pay out of pocket.

SORRY FOR GOING ON AND ON....if anyone actually made it through this lengthy message, thank you. I would love to chat with anyone who can identify with how I feel, and talk to people about various drug treatments. I plan on telling the neurologist right off the bat that I can't afford Mirapex or any 'new' drugs, and hope something older and less expensive will be effective.

TAKE CARE EVERYONE!! I look forward to getting to know some of you very much.

Allegra

[allegra]

I forgot to mention that I had iron deficiency anemia in 2003, with a ferririn count of 9. I lost about 1/3 of my hair, and it took a long time to build my iron back up. I now take ferrous fumarate 200mg every day JUST IN CASE.

Allegra

[SquirmingSusan]

Hi Allegra and welcome to the forum. I like how you've just jumped in and have responded to others already. And it sounds like you've learned a lot already. That's the key to this whole thing - educating ourselves.

At the top of this section there is a sticky post with lots of information about RLS and RLS treatments. There are links to several major documents about RLS and treatment options. One that we mention a lot is the "Mayo Clinic Algorithm for the Treatment of RLS." Hopefully your neurologist will be well-educated about RLS, but just in case you may want to print out a copy and take it with you. Most doctors will respect something from the Mayo Clinic. It talks about various treatment options as well as medications to avoid when you have RLS.

Not all medications for RLS are expensive. But the ones that are cheap are the ones that are harder to get because they're controlled substances. Opioids, like Vicodin, Codeine, of methadone, are cheap and are one of the most effective treatments, but hard to get prescribed. You might have better luck with the benzodiazepines like Valium or Clonopin. Clonopin has been a popular RLS treatment for years, but it has a long half life and can cause a lot of daytime drowsiness. But some people use it with great results.

It sounds like you have some work to do to get your new husband off the couch and out socializing in the evenings. The couch potato lifestyle doesn't mix well with untreated RLS. You may also need to find a different form of exercise that doesn't aggravate the RLS. Sometimes people with RLS need to exercise in the morning, and sometimes it's OK in the evening. It's all about what works for you.

Your post wasn't too long. It's good to get some background on people when they're new.

[SquirmingSusan]

I forgot to mention that I had iron deficiency anemia in 2003, with a ferririn count of 9. I lost about 1/3 of my hair, and it took a long time to build my iron back up. I now take ferrous fumarate 200mg every day JUST IN CASE.

Allegra

You may want to have your ferritin checked when you go to the doctor. Hopefully that isn't too expensive. Low ferritin levels can definitely make RLS worse in a lot of people.

[allegra]

Susan,

You are probably right, I will have to get a new ferratin blood test. I hope its not expensive, Back home in Canada when I was iron deficient I had bloodwork done every two weeks to monitor it, and of course none of it cost a penny...nor did the many Dr's visits. Ah....universal medicare : )

The neuroloigist I will be seeing is one I found on RLS.org, and apparently he treats RLS and is involved with an RLS support group in that city....I feel lucky to have found someone reasonably close by! I'm also having all my bloodwork results faxed from my Dr in Canada, so hopefully that will help.

As for those other drugs...vicodin and such: I know about codien (who doesn't!) as Tylenol3 is the most commonly prescribed drug in Canada, but I had not heard of Vicodin unitl I moved to America...I don't think we have it back home, but it seems to be widely prescribed here. I'm not too afraid of trying those kinds of drugs, as I have never had any kind of drug problem/dependence problem, and I don't see myself developing one at this stage of the game : ) But whenever my husband and I see the commerical for Mirapex we are always a bit horrified at the 'unusual gambling or sexual urges' part...I mean WHAT THE HECK!?

I'm glad to be here...up until a few years ago I thought the 'leg twinge' thing was just me. I'm not glad other alos suffer from it, but I AM glad that there are people out there who don't think I'm crazy or making it up! : )

Allegra

[becat]

Welcome Allegra,

Well I have to diito SSusan's bravo to you about jumping right in. I love that. Make you family already.

Welcome to the USA as well.

You know I think it may be the more rested lifestyle in part, but about excercise, you have to find a level that works well FOR you. I'm so sorry it worked against you.

I stick with walking and I would love to add some kind of water/cise (lol) too, but can't drag my self to get into a bathing suit. LOL

We chat in the written chat room On Monday nights and Voice chat on Thursday nights, and we'd love to have you in both.

Glad your here, only sorry for the need to be.

let us know how the doc appt. goes.

O, and about the meds. everyone is slightly different and and many people do well with DAs or Mirapex or Requip for a long time. So we are going to wish you into the 88% that do well!

Don't kick the hubby tooo hard! LOL

Lynne

[Aiken]

and of course none of it cost a penny...nor did the many Dr's visits. Ah....universal medicare : )

I'm originally from Canada, and I've long since checked into this...

You only think it didn't cost a penny because you never actually got your hands on the many pennies it really did cost. You paid in advance through taxes, or at least someone did. A Canadian pays 15-20% more, on average, than an American does for private insurance.

If you actually got your hands on the money before the government told you to give it back to pay for universal health care, you wouldn't think it was free in the slightest. In fact, you'd probably be angry about how much it cost you...

(This is one of the biggest reasons why American Tax Freedom Day is April 23rd and Canadian Tax Freedom Day is June 20th.)

---

Financial nit-picking aside, if you turn out to be anemic again, you may find you need IV iron infusions. Some people simply cannot absorb enough iron intestinally. The bright side is that an infusion lasts a couple of months, at least. No pill-popping, no nausea. It's nice, in that respect. All it costs is an hour or two every few months, plus copay/fee, depending on your insurance or lack thereof.

[sardsy75]

Hey Allegra

Glad you could join our family, sorry it's under such uncomfortable circumstances.

I noticed that you've not been able to get your hands on any prescription medications yet.

There is a whole section devoted to Non-Pharmaceutical Therapies on this discussion board. It is chock-full of interesting information and various different alternative therapies and equipment people have tried.

Personally, I've found the following VERY useful:
1. Valerian - a natural herb that helps with relaxing muscles and insomnia. Dosages range from 200mg - 2500mg and should be available at health food stores, grocery stores and pharmacies.
2. Magnesium - a lot of RLS'ers have problems with cramping feelings when their RLS shows up. I've never been one to shy away from salt in my diet or I get insufferable leg cramps on top of my RLS. The extra magnesium I get is from a combination of a daily Multi-Vitamin & Mineral Tablet as well as the Valerian tablet. (Some brands of Valerian are sold as a straight herb, others have magnesium as part of it to help with relaxing the muscles)
3. Iron Tablets - just a daily iron tablet. My ferritin levels are fine as are all my other iron levels.
4. If you can tolerate it, and stay still for long enough ... a good deep tissue massage!

My partner and three step-daughters are well trained when it comes to "bashing" my legs for me when i'm beyond being able to do it myself, so you are not the only one who resorts to self-torture lol.

As the others who have welcomed you have said, education in the key to finding a medication, or combination of medications to help your RLS. When you see your Neuro, take along the RLS Algorithm and any other information you might think is useful.

A couple of other useful RLS sites are Southern California RLS Support Group which has plenty of up to date information about RLS medications and the ever so helpful RLS Rebel (aka Jill Gunzel) who provides you with a myriad of ways to keep your RLS under control WITHOUT the use of medications.

I've given up trying to understand the Australian Public and Private Medical Insurance systems. All I know is that I wouldn't be without Private Health Insurance considering all the health-related things that get thrown my way!

Keep us up to date on how you are going, especially when you've seen your Neuro.

(((((hugs)))))
[/url]

[allegra]

I will let everyone know what the neurologist says!! 'Leg bashing' LOL I like that....it's pretty much exactly what it is : (

Getting up and walking is an instant 'fix'....but I just get SO MAD because I don't WANT to get up and walk around!!! I want to just RELAX and read my damn book!!!!

Anyhoo....I'll be seeing everyone in the Monday chat if I can figure out how to work it LOL. RLS sucks...but now that I have found others who have it and know I'm not 'crazy' or 'making it up'....well I DO feel alot better about things! : ) Thank you to everyone for posting.

[jumpy]

Allegra, Welcome, but really sorry you need us..

Just a quick thought. Some drug companies offer help with prescription cost. I don't know if any of these companies have RLS meds, but it won't hurt to ask.

Check with your doctor and/or pharmacist. They might can help you.

Good luck...Pat

[ctravel12]

Hi Allegra I just read your post. Are you the same person that e-mailed me on my support group in Lake Havasu. If so, I am so excited to meet you at our meeting which is next Wednesday, June 11th at the Library from 1 - 2 pm.

I can certainly relate what you are going through. I am sorry that I am just posting now but when you had posted I was out of town and was checking all of the post and happen to run across your name. If you are the same person I did call you and we talked for a while.

We had our chat last light and so sorry that you were not there. If you have not found how to get on just to go the search engine and type in www.rls.org and it will show various subjects and one will say Chat.

If someone how you cannot get on it I downloaded (it is free) Mozilla Firefox and typed in Restless Leg Syndrome and got in that way.

I hope that you are feeling better today.

[Aiken]

(Edit: deleted idiotic second universal health care rant I wrote because I didn't notice I had already written one on this thread.)

If you're going to live down here, you should get your husband to buy you some basic insurance. You can get something minimally decent for maybe $100-$150 per month, plus a yearly deductible, depending on where you live and your age and habits and other stuff. Especially check with your school, as many offer student group plans that are much less expensive. It may require you to do everything through a primary care provider (as in Canada), but that's a hoop and not a brick wall. (And, most notably, it'll actually cost less than than your health care back home did.)

At the very least, you should have some minimal catastrophic health insurance, which you can get for $30-50 per month. You don't want to get cancer or a heart condition while uninsured. This is like eating out one time less per month; it's not that much money and it's a basic necessity.

You can also buy prescription discount cards. I don't know how they work, or if they're worthwhile when you only have one prescription, but it's something to look into.

For that matter, doesn't your husband have insurance through his work? It's usually not ridiculously expensive to add a family member.

The main thing to understand about living down here is that the big chunk of your income, or your husband's income, that would be forcibly taken away in Canada to pay for universal health care is not taken away down here. Your husband is bringing home more of his income than he would in Canada, and so will you when you get out of school and start your career. Down here, you have to take charge of the process yourself, using that extra money to accomplish the same thing by buying private insurance. You've got to think of that money as being committed to health care and not use it for more fun stuff. And, really, wouldn't you rather be $100 poorer per month if it meant being able to live in your own skin?

The bright side of all this hassle is that, down here, the doctor sees YOU as the paying customer, rather than the government, and therefore they tend to be a little more interested in keeping you happy. Sure, there are some jackasses, but I find the doctor experience is way, way, way better than it was back in Canada. I hated Canadian doctors and hospitals--they just didn't care whether or not you were satisfied with your care, and it showed. I was actually, genuinely, phobic about hospitals until my wife had to have surgery and I discovered that they don't have to be miserable places.

but I had not heard of Vicodin unitl I moved to America...I don't think we have it back home,

I think hydrocodone (Vicodin) was in 333's back in Canada.

But whenever my husband and I see the commerical for Mirapex we are always a bit horrified at the 'unusual gambling or sexual urges'

Well, it works directly on the brain, so it's not surprising that it has some effects on your thinking processes. I believe Requip has fewer issues with gambling and other OCD issues. I think most people consider Requip to be the one to try first.

If you find a really nice doctor, he might be able to set you up with a bunch of starter packs of the stuff. They're obviously not really supposed to do that, but sometimes they do if someone's really got no money and they're in a bad way. It might get you through the summer, at least, when RLS is at its worst.

Anyway, sorry you have RLS. Don't worry, it may not be easy, but you can almost certainly make your life significantly better than it is now. There's a lot you can do. Sounds like you're already on the research road, so keep it up. The more you learn, the more you'll know what to do. Especially take care of that ferritin--if it got that bad in the past, you may have an absorption issue that's bad enough to keep even your supplements from working well enough.

[SquirmingSusan]

Wow Aiken. You must live in a whole different country from me! In my area I have yet to find a doctor who still isn't of the opinion that I work for them and am supposed to do what they tell me. I have yet to find a doctor who will even LOOK AT the Mayo Clinic Algorithm, let alone take a copy and read it. And if they do know anything about RLS they aren't willing to prescribe controlled substances. I actually had one doctor, who told me that she had just gone to a Mayo Clinic training on RLS, tell me that yes indeed the Mayo Clinic does recommend Sinemet for daily RLS, and that she's the doctor and I'm the patient and therefore I didn't know anything.

Someone please prove me wrong here! I live near St. Paul, MN and if you can recommend a doctor who isn't a total know-it-all (who doesn't know anything), or isn't a coward who is afraid to prescribe controlled substances, please give me a name! I've been to doctor after doctor after doctor.

We now interrupt this rant and return to our regularly scheduled programming.

How are you doing, Allegra?

[Aiken]

Ha! I just realized I posted virtually the same rant a second time to this thread. I thought this was a new thread with another universal-health-care supporter. Stupid me. I should delete that second one.

Anyway, Susan, one of the things that would probably make a difference is that my frame of reference is relative to Canadian doctors. As I said, sure, there are jackasses down here too, but it's still miles better than it was north of the border, and there are way more options. Even the most frustrating, god-complex, god-I-hate-you-whiny-patients-interrupting-my-day doctors down here are only just about on par with what I dealt with up there.

It's even worse if you've had to deal with nurses in hospitals up north... I think they're so overburdened due to the cheapo funding that the government actually offers hospitals, that all of their compassion has been exhausted.

All this is to say nothing of the ubiquitous months-or-more-long waiting lists for anything other than a GP visit.

I dunno, I'm sure your troubles with your doctors are very real, but it may be that you'd find it even worse if you moved north. All you can do is keep firing the idiots and hiring new ones, I guess.

[KBear]

I have to say that my doctor experiences of late have been excellent. I moved from a larger market (by population size) to a smaller market (about 1/3 the size) 5 years ago and I think this may be the major difference. The wait times to see a doctor are shorter, the clinic is smaller and less crowded and the doctors spend more time talking and listening to you.

Aiken, I agree with your views on Universal Heath Care. All of my life I have been covered by employer "shared cost" health care, first under my parents then under my own or my husbands employer. This system has worked well for me and my family. There are segments of the population that need health care solutions and we need to address this issue but the system we have is working well for many.