Hello Board Buddies--I'm just jumping right in here..

[Anonymous]

Hello to all! I'm new to the website, but I've been diagnosed with RLS about 8 or 9 years ago. Funny how sometimes it doesn't bother at all and sleep is blissful, then for no reason, it flairs up and hits you in the face and knocks you down! I had been pretty free of symptoms for about 2-3 years, then had to have a second back surgery in October, 2004 then shoulder surgery in April this year. No problems after back surgery, but now I hardly sleep at night, up all night, with resulting lethargy the following day. Ambien doesn't seem to help, neither does Sonata. I'm retired from working a night shift as an RN, but that was in August, thought I'd be over that by now. Any comments would be appreciated. My family doc doesn't have any clues. Do I need a neuro? Buzz.

[Sara]

Hi, Buzz and welcome!

You're not the first or only person to talk about RLS going nuts after surgery. I'm sorry you're having such a hard time sleeping. Facing life without sleep is really hard.

I personally don't have any wisdom for you. I'm one of the milder cases on the forums and currently living okay without meds--but if you read the old posts, especially in the Pharmaceutical and Non-Pharmaceutical sections, you'll get a good overview of what others are trying. I'm sure other members will write to welcome you and add suggestions as well.

Hang in there!

Sara

[Buzz]

Thanks Sara for your reply! I'll probably be up later on tonight and I'll look at some of the old posts. As yet I'm not on any meds for this or any of the Parkinson's meds, I guess it's just a matter of time. Buzz.

Hi, Buzz and welcome!

You're not the first or only person to talk about RLS going nuts after surgery. I'm sorry you're having such a hard time sleeping. Facing life without sleep is really hard.

I personally don't have any wisdom for you. I'm one of the milder cases on the forums and currently living okay without meds--but if you read the old posts, especially in the Pharmaceutical and Non-Pharmaceutical sections, you'll get a good overview of what others are trying. I'm sure other members will write to welcome you and add suggestions as well.

Hang in there!

Sara

[jumpyowl]

{That wink should have gone to the title line.}

Just guessing based on the first preliminary surveyof OUR RESEARCH PROJECT (ORP), both you and I belong to the minority; i.e. we have secondary RLS. It is not gene related and theoretically we have a chance figuring out what triggered it and how we were weaned off of it.

Now sleeping is something else. Our disabled daughter lives with us and it appears that all three of us have serious problem with having a normal sleep pattern.

I had one sleep test recently and it was helpful. It is important that the physician in charge of the laboratory (or at least the technician running the test) be well aware of all the things that can be detected from the results of polysomnography. It is definitely NOT a tool to ONLY detect and study sleep apnea, although that is what it is most commonly used for.

In my case, it detected a severe periodic leg movement disorder (PLMD) which by itself can mean insufficient delta phase sleep. My daughter with her severe fibromyalgia could also have the same problem as it can cause narcolepsy. My wife with depression, anxiety and panic attacks also have serious sleep problems and we cannot even tell whether first came the chicken or the egg.

In your case, taking a night shift with the heavy workload of nurses nowadays, and back problems, possible postsurgical trauma there is plenty of problematic causes.

I am sure you are taking your sleep problem seriously. Make sure your physician also does so! Often a sleep diary of the previous week helps the doctor to visualize how bad the insomnia is. If one can track down the major cause (e.g. anxiety, nervous tension, or unsolvable family problems, or possibly chemical imbalance of neurotransmitters) that makes the planning of the possible treatment more rational and effective.

I wish I have the answer for you. I stopped taking any type of antidepressants (Remeron, then Wellbutrin) for two reasons, I did not feel I was depressed and they had side effects exacerbating symptoms I already had. I am only on Mirapex, the dopamine agonist, at 3x0.25 mg/day and ocacsional hydrocodone for pain other than RLS pain.

Jumpy Owl (who nowadays sleeps somewhat better despite worries)

[Guest]

Hi, I take requip and have for about 2 years now. I take .5 at noon and 2 mg at night. So you see .75 really isn't much at all. It worked great for me for a long time but it's startiing to wear off and I'll either have to have it raised or change the med again. Hate changing from something that was working, but may not have the option of upping the dosage. Good luck in your search for the right meds. I also take topomax for leg nerve pain.

take care,
Audrey

[RestlessNGa]

Well, I am glad to see the hacker didn't do any permanent damage...I just increased the dosage of Requip.

I was taking .25 at night, I now take .5 twice a day. Last night I went to the ER because I was in so much pain and nothing helped. This has been an ongoing problem and the neuro thinks I could have Fibro but not sure.

Even now, after all the meds have worn off I feel like I have a good case of the flu coming on...I don't have the flu, colds or viruses. I never have, my immune system works very well.

They also drew blood last night to check for rhumetoid arthritis but it was negative...so guess I can rule that out also if I understood what she was saying.

It was kind of hard to follow along with 400mg of Hydrocodone, 50mg Tramadol, and a couple of Antivan thrown in. I still managed to walk out of the hospital. lol

[becat]

Hi Restless,
I'm so sorry to hear that you had to go into the ER. I'm glad the RA blood work came back neg.....
I take great issue with the idea that many of us DON'T need pain medications. I think it's crazy that many of us are just allowed to suffer.
You know I think it's just been in the last several (2-3) yrs. that most RLS docs actually see that pain can be an issue. I was thinking about my own RLS as a young child. It was horribly painful. Makes sense that when it popped back up as adult RLS, it would be painful then too. Thankfully I'm not a doc and don't have to truely answer that.
It's simple to me.........pain being an issue needs to have pain medication to address it.
I understand that this is not always the case. There are seemingly some that can get pain relief from some of the other medications..........
But if it's not working I would make pain an issue for your doc to deal with.
If you were in enough pain to take you to the ER, that warrants a call to the doc's office today!
Hang in there. And we're glad for the update. Keep them coming.

[RHuntsbabydoll]

Hi Patricia:

Isn't it wonderful to be finally diagnosed with the right diagnosis. I was so relieved when my problem was finally given a name. Not knowing what it was really scared me. I am taking Sinemet (Carbidopa/Levodopa) and an anti-convulsant Clonazapam. So far, these two medications together are helping me out. I do wake up very stiff in the mornings and it takes me a while to get to where I can function normal. I've also noticed my energy level is way down from what it used to be, so I'm trying to learn how to accept not getting as much done. I am also very seriously low on iron, so the doctor has me on iron pills every morning. He said it would take about 6 weeks to get back to where I should be. RLS and PLMD will make some big changes in your lifestyle, but you can handle it with the help of your doctor and all the wonderful people here in the group. Thank yall so much for the support you give.

Hugs,
Cindy

[Kris]

Just wanted to say Hi! I'm in Ga. too! Northwest Ga.