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Hello from IN!

Posted: Fri Jun 12, 2009 2:33 pm
by Jeff
Hi everyone! I'm new to the board!
I'm so glad I found this site as it has loads of helpful information!
I havent been diagnosed with RLS but Ive been back and forth to the Dr., the Neuro, and payed a visit to the sleep center and I know based on my symptoms that I have it.
Ive always had "growing pains" as a kid and just 3 months ago, I got hit with this chronic pain in both legs along with a creepy crawling like feeling in my muscles and occasional tingling.
And for 3 months, Ive gotten little to nearly no sleep and now Im desperate!
The Dr. actually put me on Requip but after 2 days I started to twitch in various parts of my body and I took myself off the med and since then, my pain has become severe and I now suffer the symptoms 24/7 all day and all night..
Anyways, Im glad there's a place I can come and talk about this stuff with people who actually have the same problem..
I've been told it's just in my head and Im not taken seriously within my family. :?
Glad to be here and sorry for the long post!

Posted: Fri Jun 12, 2009 3:56 pm
by Neco
When you stopped taking Requip did you inform your doctor what the medication did to you?

Communication is very important at this point.. Hopefully you are going back to the doctor soon.. Please print out and read The Mayo Clinic Algorithm for RLS (link in my signature)..

Once you are familiar with it, take it with you to your next doctor visit and go over it with them.. If they even refuse to look at it - you will have to find a new doctor though, because its not worth wasting anymore time with someone who isn't willing to educate them self about a condition they are trying to treat/diagnose.

Posted: Fri Jun 12, 2009 6:36 pm
by Jeff
My family doctor told me that he'd ran everything he could and was turning it over to the Neuro at this point and didnt wanna deal with it basically.
Im going to the Neuro next Tuesday and I'll ask her what she thinks but in my uneducated opinion, it's RLS.
Doesnt bother me one bit because I'll be she knows more about RLS and I have to find a new doctor anyways because mine's leaving the practice.
But yeah, thanks, Im gonna print that out and take it up to her just in case.
Im hoping for the best.

Posted: Fri Jun 12, 2009 7:32 pm
by Neco

In the meantime.. Write down a diary of your symptoms and how they effect you.. Keep a sleep diary too listing when you sleep and for how long, if you try and can't sleep, why you couldn't sleep, etc..

You could probably make them into one diary even, and just make entries listing how your symptoms have been for the past 6 - 8 hours, and make entries for when you go to bed, get up, stay up/and why, etc..

Also write down your experience with requip.. From starting your first dose and any improvements you saw, to how long they lasted before it became worse.. Write down the side effects you experienced and when they showed up / how they made you feel, and also what doses you were at with each major change.

That info combined with the algorithm, and hopefully this Neuro who knows what she is doing and is actually listening, will hopefully get you the proper treatment you need (and deserve). They may have you try something like Neurontin or Lyrica, or maybe even Mirapex also..

Just hang in there and give them a shot, so that if nothing is still working you can go back, with the algorithm again, and go over it with them while saying "Hey doc, look.. I've tried all these medications and its just not working, and the algorithm says that maybe we should try an opiate next, and I kind of have to agree with that"... or something like that, in your own words..

Who knows, maybe you'll get lucky and Neurontin or something will work fine for you, or she'll try opiates right away (99% successful in most people) or maybe even a combination of the two.

Hope you get help soon.

Posted: Fri Jun 12, 2009 8:02 pm
by SquirmingSusan
Hi Jeff, and welcome to the forum.

May I ask what dosage your doctor started you on with the Requip? Doctors often start patients on way too high a dose, and that leads to problems. Around here we tell people to start on the lowest possible dose and only increase if the symptoms aren't controlled. (We're not doctors, just very experienced patients who hear the horror stories from people whose doctors don't know what they're doing.)

Quitting a dopamine agonist like Requip or Mirapex can be difficult, especially if you've had some augmentation of your symptoms, and it sounds like you may have. You may want to search the forum about "augmentation." Basically it's when the medication makes the symptoms worse.

Please do read the Mayo Clinic Algorithm as Zach suggested. We have found that, sadly, most doctors really don't have a clue about how to treat RLS, and that included neurologists. It's best to educate yourself and then you can advocate for proper treatment.

Posted: Fri Jun 12, 2009 11:08 pm
by Jeff
I think he had me splitting a .25 in half?
I cant remember now..
He just had to pull me off of Neurontin because it was making me retain fluid in my feet and ankles.
I think since Ive been experiencing severe pain during the day as well as the night, I might just ask her for a controlled release narcotic like OxyIR or Ultram ER or something of that nature..
Vicodin sure doesnt work for me, makes me all queasy..
All this started 3 months ago so I can only imagine some of the people who've had this there whole life before finding something that helped..
It's very frustrating at this point but Im determined to figure it out quick.

Posted: Sat Jun 13, 2009 2:47 am
by ViewsAskew
Did anything happen 3 months ago? Just wondering why it would come on so strong so fast...

Also, has anyone tested your ferritin levels?

Meds used to treat rls

Posted: Sat Jun 13, 2009 5:28 am
by mackjergens
you might wish to go to and print off the long list of meds used to treat rls, and take it with you,so your Dr will have all the options listed for her. pain meds are also listed as a help for rls. All tho most Drs do not like to give pain meds.

Posted: Sat Jun 13, 2009 1:59 pm
by Jeff
Nothing at all.
I actually started getting tingling and creepy crawlies before the winter last year and I went to the ER and they said it was parastesias and put me on Flexeril and Ultram.
They didnt really help that much but it ended up going away and then just hit me again and more severe this time.
I get it in my arms and my feet hurt too along with my legs..
Yesterday morning up to 11 AM, my whole left leg was shooting sharp pains from the ankle all the way to where the leg meets the hip..
I mean it's severe!

Posted: Sat Jun 13, 2009 2:03 pm
by Sojourner
J, Another welcome to the Board and our rls "family." Lots of good advice already given. I think Ann's question is a good one as you mentioned:

" and just 3 months ago, I got hit with this chronic pain in both legs along with a creepy crawling like feeling in my muscles and occasional tingling."

As your look back on your symptoms and with the diary concept that Zach mentioned in mind, consider any injuries, illnesses, etc that also may have occurred about this time.

What things did your doctor run?

It's perhaps good that your doctor is admitting that he cannot do more for you and referring you on to someone else. A neuro is good but more importantly whoever it is should be knowledgeable about rls. Your posts and readings here should give you more information to help you make that determination. Again, welcome and good luck. M.

Posted: Sat Jun 13, 2009 2:48 pm
by Jeff
No injuries at all.
I actually started last winter and went away and came back 3 months ago more severe.
All the symptoms are there and everyone Ive seen has mentioned RLS and my doc actually put me on Requip but it just made me twitch at various places of the body..
Im confident with the Neuro (as long as she doesnt do another EMG!) :)
My doc took me off Neurontin for sweling of the feet and ankles but after about 2 weeks now, the swelling is still there..
I dont think he knows what he's doing because I think its the Lopressor doing it (Neurontin wasnt doing a thing anyways)..
Im just frustrated with all this hitting me at once and I wont go another 3 months with no relief..

Posted: Sat Jun 13, 2009 4:54 pm
by Sojourner
J, Thans for sharing so much more. Hopefully the trip to the neuro will be more definitive both in terms of a diagnosis and treatment. Keep us posted. M.

Posted: Sat Jun 13, 2009 7:53 pm
by SquirmingSusan
Hi Jeff. Well, half of a .25 of Requip is definitely not to high a dose. I didn't think that Requip came in that low of a dosage. But from your description of the symptoms I can't help but wonder if anything else is going on. Other than causing twitching, did the Requip help with the pain or creepy crawlies at all? I have to run, but I want to post the criteria for a diagnosis of RLS. This from the main site.

* You have a strong urge to move your legs which you may not be able to resist. The need to move is often accompanied by uncomfortable sensations. Some words used to describe these sensations include: creeping, itching, pulling, creepy-crawly, tugging, or gnawing.
* Your RLS symptoms start or become worse when you are resting. The longer you are resting, the greater the chance the symptoms will occur and the more severe they are likely to be.
* Your RLS symptoms get better when you move your legs. The relief can be complete or only partial but generally starts very soon after starting an activity. Relief persists as long as the motor activity continues.
* Your RLS symptoms are worse in the evening especially when you are lying down. Activities that bother you at night do not bother you during the day.

Does this sound right to you?

Posted: Sat Jun 13, 2009 10:49 pm
by Jeff
Every single one of them.
Thinking back, I think he had me half a .5 at night..
Im having trouble remembering things these days with the lack of sleep.
I just gave the Requip to my grandma as she suffers RLS as well and takes the same dosage of Requip that was prescribed to me.
To answer your other question, the Requip had no affect on me at all, it didnt help..
I think maybe mine's just more severe because I get it in my arms too and I suffer just as bad in the day as I do at night, unbearable pain. :(

Posted: Sun Jun 14, 2009 5:06 am
by mackjergens
What meds are you taking, any other the counter meds, such as allergy meds? you also need to check out the section on That list meds known to make rls worse, also foods known to make it worse

Did you start taking a med 3mos ago for something else, alot of meds can cause rls or increase it.

I recommend that your read as much as possible about all the ins/outs of rls before seeing this new Dr. print out anything you feel should be known about rls and take it with you. it could be you started a new med about that time and it brought out the rls in you.

Remember many Drs know very little about rls, so educate yourself so you will know to say NO THANKS to some meds offered you.