Newly diagnosed finally!

Whether new to RLS or new to the site, we welcome you and invite you to share your history and experiences with RLS/WED, introduce yourself, and ask questions. Successful treatment starts with a solid understanding of this disease.
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littlebee
Posts: 2
Joined: Sat Jan 27, 2007 1:34 am

Newly diagnosed finally!

Post by littlebee »

Saying a big Hello! to e1, newbie here.
Well after 12 years finally have a diagnosis of RLS, secondary to fibro. Have mainly in left side leg and feet. Constant muscle twitching and pain in foot, gets so bad the toes spread apart from muscles pulling. Have a new young doc who put me on requip, so still trying to find the right dose to calm the symptoms.
Nite time brings on the "marathon running", I had no idea I did this till my bf asked me about my dreams, lol. I was really shocked that I was doing this while asleep. Still not sleeping well tho and doc will not give me anything to help me sleep. I did learn here NOT to take benadryl which I was taking, so thanks for the big tip :D So is there a drug to use for sleeping? Also taking antidepressant effexor cause of the fibro, taking it's toll on me. Was always told by my other docs well it's just the fibro causing my symptoms so very glad I changed doc's! Hoping I get some relief soon so I can resume living again. Walking is always painful for me can get no relief from moving as others do. Will be going to rheumatologist soon for further testing, as joint pain is present in other areas.
Well that's enough about my condition, glad I found a place where others are in the same boat, as always life goes on tho.

Penguinrocks
Posts: 703
Joined: Thu Mar 17, 2005 6:03 pm
Location: Massachusetts
Contact:

Post by Penguinrocks »

Welcome Littlebee,

My first form of advice, get off the Effexor and as quickly as you can.

Not only does it send RLS into overdrive, it also causes weight gain....I came off of Effexor and within a few months, dropped 30 pounds!!!!!

Now, as of last week, I stepped on the scale and for the first time in 16 years, they didn't have to move the "weights" up to the next highest mark!

I'm on Wellbutrin now and it does not affect the RLS like the other....

Again,Welcome!

Penguin
Beware the Penguin

littlebee
Posts: 2
Joined: Sat Jan 27, 2007 1:34 am

Post by littlebee »

Thanks for the info on effexor, I found the med card for rls and it is listed as do not take. Will request Welbutrin instead. Hmm the doc told me effexor can cause anorexia---still waiting for it to start. LOL :lol: But I agree with you, my appetite has increased definately.

kpru13
Posts: 3
Joined: Mon Jan 29, 2007 4:35 am

Post by kpru13 »

Hi,

I read in a magazine about a vitamin called Bio-CMP. Which consists of Calcium, Magnesium, Potassium. Instead of ordering this product I went to GNC and picked up a Magnesiun/Potassiam supplement. They had it in capsule form since I hate tablets. Anyway I have been taking one capsule an hour before bed and I haven't had the creepy crawlys in a week. I think RLS is a deficiancy of these minerals. Give it a try. If your condition is really bad You may want to take 2 a day. Good luck!

Penguinrocks
Posts: 703
Joined: Thu Mar 17, 2005 6:03 pm
Location: Massachusetts
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Post by Penguinrocks »

hi Littlebee,

ya I told my doc...if you want to treat depression with Effexor...DON'T...it puts weight on wicked and just makes the person more depressed....the Wellbutrin...well, that does help speed up metabolism somewhat...and ya, i don't eat like i used to

Penguin
Beware the Penguin

SquirmingSusan
Posts: 2991
Joined: Sun Nov 12, 2006 4:08 am
Location: Minnesota
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Post by SquirmingSusan »

Hi Littlebee,
What's up with your doctor not being willing to give you something for sleep? There are good sleep meds nowadays, like Ambien CR (although some of us have weird side effects from that one), Lunesta, or Sonata. You might also try melatonin. Most of the sedating antihistamines aggravate RLS, but I find that I can take a half a Unisom, and that helps me sleep, but doesn't make the RLS worse. If I take a whole one, that's a different story. Unisom has the same antihistamine as Nyquil, and others have said that Nyquil works for them.

As for antidepressants, yes, most of them aggravate RLS. I was on Effexor for years and years, but was also taking diazepam which kept the symptoms of RLS at bay. Both of them helped with my chronic vertigo (old scuba diving thing). Effexor also helps with pain, and it didn't cause weight gain for me. You need to weight the benefits vs. side effects of any drug. Whatever you do, don't just quit the Effexor! It's a hard drug to get off of. Very long withdrawal process. Taper slowly. (Not like I did - I quit cold turkey :? ) Quitting the valium was easy. The Effexor was terrible.

I'm off of all antidepressants right now, and my family is suffering for it. I'm hoping my brain can recover from all the meds and I can get to some kind of equilibrium before deciding if I need them again. I used Welbutrin for a month or two, but it was way too energizing and made me irritable. I may try it again, but if it doesn't make me feel good, and I need an AD, I'll probably go back on Effexor or Lexapro.

It's all about what works for you, and what side effects you can tolerate. I hope you get something to help you sleep. Sleep deprivation is horrible.

Susan

ctravel12
Posts: 2125
Joined: Mon Jul 03, 2006 2:02 am
Location: Lake Havasu City, Arizona
Contact:

newly diagnosed finally

Post by ctravel12 »

Hi littlebee and welcome. Please do not cut yourself short about your condition. We all learn from each other.

I do not have any knowledge of the meds that you are taken so cannot give you any input on it. I know reading alot of the old and new posts I am sure will give you answers to your questions.

What Susan says being sleep deprived is miserable as I have also been down that road too. I hope that you find the right meds that work for you and also get the much needed sleep that you need.

Please keep us posted on how you are doing.

Hi Kpru13 and welcome too. I am glad that you found something that is able to help you with your rls. Please keep us posted on how you are doing and thank you for sharing that info with us.

This is a wonderful, caring and supportive group. They have saved me nunmerous times. Good luck to the both of you.
Charlene
Taking one day at a time

tdewey
Posts: 3
Joined: Wed Mar 21, 2007 11:35 pm
Location: Cadillac, Michigan

New with RLS

Post by tdewey »

Hi Littlebee....I was just diagnosed with RLS, Sleep Apnea am being tested in a few weeks for Insomnia & low levels of Leptin & Ghrelin. I have dealt with all these symptoms and told I was going crazy. So I don't have any thing to add...but keep me posted on your outcome. I am just behind you. Thanks all for your insite.
:)
Thanks for your support!
Tdewey

ctravel12
Posts: 2125
Joined: Mon Jul 03, 2006 2:02 am
Location: Lake Havasu City, Arizona
Contact:

Re: New with RLS

Post by ctravel12 »

tdewey wrote:Hi Littlebee....I was just diagnosed with RLS, Sleep Apnea am being tested in a few weeks for Insomnia & low levels of Leptin & Ghrelin. I have dealt with all these symptoms and told I was going crazy. So I don't have any thing to add...but keep me posted on your outcome. I am just behind you. Thanks all for your insite.
:)


Hi tdewey and welcome to this group. You have found a wonderful support group, Please do not think that you are going crazy. Having insomnia is miserable. We all have been down that road a few times and it can be very rough. When you have these tests, please let us know what the dr says.

Being new to this site, please read the forum New to RLS "Managing RLS'
Mayo Clinic Algorithm has an excellent article. Print it out and bring it to our dr. It is also good to try to educate yourself as much as you can regarding rls before seeing your dr.

Reading alot of the old and new posts is very helpful too.

If you want to just talk, vent, scream or even cry please do not hesitate as we will be here for you. Like I said before it is an excellent support group
Charlene
Taking one day at a time

Rachel
Posts: 92
Joined: Thu Apr 12, 2007 12:42 am
Location: Massillon, Ohio

You have fibro, too?

Post by Rachel »

Hi Littlebee, Your mention of fibro caught my eye. Did you have the FM first or the RLS? Or is it one big blur of pain? I have had RLS for years, but I was recently (maybe) diagnosed with the FM. Cold laser treatments are for now helping me with the FM but I haven't been using them enough to recommend them to anyone. Just something for you to research.
Rachel

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