New here....

Whether new to RLS/WED 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.
myasmom
Posts: 15
Joined: Tue Apr 01, 2008 3:04 am
Location: North Central, Arkansas

New here....

Postby myasmom » Tue Apr 01, 2008 11:26 pm

Hello,
I have never joined a forum before, but have always read the posts on this paticular site. I have had RLS for 2 years now. I am so discouraged of the recent events of my RLS. I am wondering does anyone else get bad leg cramps, muscle spasms in legs, rear end, and feet and also growing pains 24/7? I am currently on 2mg Requip, 1 mg klonopin. Any advice would be great .. thanks

myasmom

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cmoore1958
Posts: 232
Joined: Wed Jan 23, 2008 11:47 pm
Location: Texas

Postby cmoore1958 » Wed Apr 02, 2008 12:11 am

Hi mayasmom and welcome to the board! I'm sorry to hear you are having so much difficulty with your rls right now.

I also have painful rls that sometimes goes from my toes to my hips. My rls feels like someone is grabbing my muscles and pulling them away from the bone. Mine is still a little out of control and is 24/7 as well. I take 1.5 mg of requip and 600 mg of Lyrica. My doctor just added the Lyrica as he didn't want to go too high on the requip since I had augmented on mirapex just a month or so ago.

The best advice I can give you is to read the Mayo Clinic Algorhythm. The link is in the sticky at the beginning of this forum. You should then print a copy of it and take it to your doctor and ask him to follow it.

Unfortunately everyone is different and responds differently to medications. There's no "one" cocktail of meds that will give all rls sufferes relief. Finding the right medication(s) for your body is trial and error and can take some patience. Since you have painul rls I would ask your doctor if he would consider prescribing a pain medicine to help you through the rough spots until you find what works for you.

There are others here on the board that have a lot more "detailed" information in their brains that I can recall immediately, and I'm sure they will post their advice and recommendations to you as well. You have found a very supportive group. We are all in this together and are all here for each other -- as the bond between rls sufferers is a very strong one.

I hope you find relief soon. Please keep us posted on how you are doing.

Cyndi
Even when we are by ourselves, we are never truly alone.

My motto: It's MY pitty-party and I'll vent if I want to.

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cmoore1958
Posts: 232
Joined: Wed Jan 23, 2008 11:47 pm
Location: Texas

Postby cmoore1958 » Wed Apr 02, 2008 12:15 am

Here is the direct link to the Mayo Clinic site

http://www.mayoclinicproceedings.com/in ... ef=7907crc

You can also go to rlshelp.org for some really good information.

Another site is http://members.cox.net/gunzel/rls.html

Good luck and happy reading!
Even when we are by ourselves, we are never truly alone.



My motto: It's MY pitty-party and I'll vent if I want to.

myasmom
Posts: 15
Joined: Tue Apr 01, 2008 3:04 am
Location: North Central, Arkansas

New here

Postby myasmom » Wed Apr 02, 2008 12:18 am

Cyndi,
thanks for your reply. I am so glad that I can talk to people about our condition. My hubby thinks it is all in my head but wonders why he has bruises on his legs :lol: I will take your advice as I see my GP tomorrow. Thanks again.

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cmoore1958
Posts: 232
Joined: Wed Jan 23, 2008 11:47 pm
Location: Texas

Postby cmoore1958 » Wed Apr 02, 2008 1:49 am

Myasmom,

It is good to talk to people that understand. My husbnd finally understands what I'm going through in his own way. He is really supportive and I find him in the spare bedroom more often lately because I'm "wild" at night! The kicking is called PLMD (periodic limb movement disorder). Not everyone with rls has PLMD -- just us lucky ones. :D

If you can talk your hubby into in it would be great for him to get on the discussion board and read what others are going through. Mine did and it helped him understand immensely. I sometimes (most times) wish rls was something that you could "see" so others would be more sympathetic towards us. Thankfully the research is helping us and the publicity for rls is growing -- knowing these two things makes it easier some days.

Please let me know how you are doing and what the doctor says tomorrow. We're with you, girlfriend! You can PM (private message) me if you want and I'll send you my email address in case you have more questions.

Welcome, again.
Cyndi
Even when we are by ourselves, we are never truly alone.



My motto: It's MY pitty-party and I'll vent if I want to.

becat
Posts: 2842
Joined: Thu Apr 29, 2004 11:41 pm

Postby becat » Wed Apr 02, 2008 3:32 am

Hi Myasmom,

Welcome to the board and the family. We so glad you have been reading the board, a wonderful place it educate yourself and your husband, and just the best people anywhere online.

I'm sorry to hear about yur hubby's thoughts about RLS. Guess what? It is in your head, but in a neurological way, not mental! If your mental, guess many of us are......and your in great company here my dear! LOL

Yes, I have pain as well. As a kid and now (or started back at 30 yrs old) at 44. I love the fact that you use the words Growing Pains. Sorry but it feels just like it did when I was a child. I doubt I'm growing taller, just bigger, so I can't use the excuse that my bones are growing. LOL

Your among friends, people that care and totally understand.

And the other thing, we talk about everything here..... There is no silly questions and your welcome to response to any post. No one owns a thread!

About treatment, since your a reader here you might already know that there is no one treatment for all of us. A good 88% of RLSers do well with one or a couple of things, added to lifestyle changes and maybe supplements. Don't think your worse off or any different if what your using now is not working, medications can be a bit of trial and error.

I can only say for myself that in the begining, I had pain with my RLS and if I had be given the chance to deal with the pain and the RLS, the basic stuff, I might have done much better.

Did you have pain before the ReQuip? If so, I look into some pain management and I would also research augmentation. Is your doctor an educated and willing partner or just doing what he or she thinks might be right? You never know, so I just ask!

Make yourself at home here. Sorry you had the need for us, but so glad you have decided to post.

Lynne

myasmom
Posts: 15
Joined: Tue Apr 01, 2008 3:04 am
Location: North Central, Arkansas

Update

Postby myasmom » Thu Apr 03, 2008 12:34 am

Thanks for all your concerns. This forum has really helped me alot. I went to my GP today,and he added Lyrica to my cocktail. I hope this helps me get some pain relief. I had a Nuero, but he wasn't to concerned so I ddecided to not go back to him. Bad thing is he is the only one for 250 miles from where I live. I am up on my feet on concrete for 8 hrs a day, with steel toed boots. :cry: I also have a 2 year old daughter and she is what keeps me going :P :P

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Aiken
Posts: 880
Joined: Thu Jul 14, 2005 6:53 am

Postby Aiken » Thu Apr 03, 2008 12:56 am

Wow, I forget sometimes that some people don't live within a few miles of dozens of doctors. I'm spoiled now that I live in a huge metropolitan area.

When I was a kid, we moved from a city that was about halfway to nowhere to a big city, in order to keep my dad near good cardiac care. It was worth it when he suddenly had a massive heart attack and needed an emergency triple bypass.

Sometimes I think people with RLS have almost as much reason to relocate. If I didn't have a good sleep specialist, I'd be insane by now. Not dead, I hope, but definitely losing my mind from lack of sleep and inability to think straight. I don't even have painful RLS most of the time--that'd be much worse.
Disclaimer: I often talk about what I do and what works for me, but these are specific to me and you should always consult a healthcare professional before trying these things yourself, lest you endanger your health or life.

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ctravel12
Posts: 2125
Joined: Mon Jul 03, 2006 2:02 am
Location: Lake Havasu City, Arizona
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Postby ctravel12 » Thu Apr 03, 2008 1:40 am

Hi Myasmom and welcome to this group. You really got some great advise from some great members. The site that Cyndi gave you for the Mayo Clinic Algorithm is really worth reading and please do make a copy and bring it to your dr.

Myasmom did your dr start you off on the starter pak of requip or did she/he give you a presciptioin for 2mg? Just curious as I did take requip about 2 yrs ago and my previous dr started me off on the starter pak and then gave me a prescription for 2mg of requip. I have the painful rls and when I was taking the 2mg of requip I started to augment (having rls anytime of the day or night) 24/7 and that lasted for 10 months.

Please if your symptoms are getting worse get back to your dr to see what he/she can give you for relief. You may have to take a cocktail of meds to see what works for you.

Please keep us posted on how you are doing. It is a great support group. As you will see below my name that we chat every Monday night. I hope that you will join us.
Charlene
Taking one day at a time

myasmom
Posts: 15
Joined: Tue Apr 01, 2008 3:04 am
Location: North Central, Arkansas

Postby myasmom » Thu Apr 03, 2008 2:24 am

Charlene,
Thanks for the welcome. My Dr did start me on the starter pack and I stayed on 1mg for a year and a half until about 3 months ago. My Dr is really trying to work with me. I have had almost every blood test all but Vit D and Arthritis. I will be goung for that next week. He thinks my Rls is secondary, but it is severe. I have had a brain mri in the past few weeks for MS, stroke etc.. but it was fine. Now he wants to try some other tests. It is a good thing I have good insurance. As you all say one day at a time!! :wink:

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

Postby ctravel12 » Thu Apr 03, 2008 2:55 pm

Myasmom I am so glad that your dr is willing to work with you that is half of the battle. I am glad that the mri test came back good. Please let us know how the other tests turn out.

I pray that you get relief for your rls. We all have been down that road and know exactly what you are going through. We are here for you no matter what.
Charlene

Taking one day at a time

myasmom
Posts: 15
Joined: Tue Apr 01, 2008 3:04 am
Location: North Central, Arkansas

Update

Postby myasmom » Thu Apr 03, 2008 11:08 pm

Hello to all!

I took the lyrica last night and so far it has really helped. The only thing is that I had Tremors (spasms) on the left side of my face. I have had Bells Palsy several times in the last five years, and I think it is coming on again. It always happens when I am stressed the most. I can deal with it though. I guess it is just one of those things. But all in all its all good. I would love to join youall on the monday night chat but I work 2nd shift and do not always get to use the computer. Some nights I am so busy I don't even get to sit except at break times. But as soo as I can I would love to join you.

Thanks to all :D

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

Postby ctravel12 » Fri Apr 04, 2008 12:10 am

Hi myasmom we would love to have you join us. If somehow you are home at another night let us know and we will try to get on that night.

Please take care of yourself
Charlene

Taking one day at a time

lorabell
Posts: 84
Joined: Sat Jan 12, 2008 4:14 am
Location: NO. IL.
Contact:

Myasmom

Postby lorabell » Fri Apr 04, 2008 4:12 am

Hello and welcome.
Glad to see your getting to know your new family. You have PLENTY of them here,LOL
Please tell your hubby rls is a brain thing, not BRAIN THING.
In case I missed some advice, please go to www.rlshelp.org and read the site.
It is the So. Ca. site and it is awesome.
Print out all the info you can and thank God you have a DR. who is willing to work with you.
Also, I saw you work second shift and since we are night people, we can chat later if you want. someone is usually up.
Also, ask your Dr. to order a ferrintin level test for you. It needs to be at least 50, but the higher the better.
It isn't a paid for blood test, and not one that is done unless you ask for it, but about 40.00 for me.
I am just thrilled you found us. The love and support you get from this group is just too hard to describe.
Is your rls from your family ? So many of us don;t say anything, but if you start asking other members, Aunts, Uncles, whoever, I bet someone will have it.
We call it by all kinds of silly names, I like the " RLS BOOGIE ".
Also, when we are medicated and trying to type RL means "REALLY LOUSEY SPELLING " At least, Cyndi and I know the thruth.The keys on the keyboard move on us .LOL.
Again, nice meeting you and glad your one of us. Anytime you need a shoulder to cry on, or a good day, come post. We have a blast in the chat room and I am sure we can make arrangements to meet you at a diff. time.
hugs
lorabell
aka
wowobl
Always remember, if you cut off your limbs, you'll have phantom rls and nothing to rub .LOL

myasmom
Posts: 15
Joined: Tue Apr 01, 2008 3:04 am
Location: North Central, Arkansas

Postby myasmom » Fri Apr 04, 2008 9:22 pm

Hi Lorabell and thanks for the welcome. I have no idea about hereditary traits seeing as I was adopted. But, I live in a small retirement town in Arkansas. And they do the sleep studies at the hospital. My DR has checked my iron but not my Ferritin iron. When I go back on the 14th I will ask him. Thanks for the info :P :P


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