New here and need some help please

For everything and anything else not covered in the other RLS sections.
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Joby924
Posts: 8
Joined: Sun Nov 26, 2006 7:22 am
Location: Philadelphia, PA

New here and need some help please

Post by Joby924 »

Hi. I just found this website and I can't tell you how happy I am to find it.
I am a 33 year old pediatric registered nurse. I am married with a beautiful daughter who will be 4 years old on December 14. In terms of my medical history, I suffer from anxiety/depression for which I take Effexor daily. I also have adult ADD for which I take Adderall XR daily. In addition, I take Percocet daily for severe pain in my wrist, as well as my knee. (Quick background: I have had 2 surgeries on my right wrist with the last surgery in February 2006; I suffer from Keinbock's Disease in which my ulna bone in my forearm was too long. Surgery was performed to shorten the ulna bone [a life-saver size piece of bone was cut out of the bone] and a plate and six screws were put into place. Unfortunately, 8months later I am still casted due to non-union of the ulna bone [it never healed] and will need another surgery [removal of original plate and screws, bone grafting and a new plate and screws installed]. My left knee has tears to the LCL and MCL and damage to the meniscus although extent of injuries will not be determined until a MRI is performed.)
AND, the reason I'm here, I suffer from RLS :cry:
I am so used to pacing the house at night, crying sometimes, because I can't sleep thanks to my legs. I have had RLS symptoms as far back into my childhood as I can remember although, of course, at that time I don't believe RLS was even heard of. I think the most difficult aspect was trying to describe the sensations I was having in my legs to my parents and physician. I can't begin to tell you how absolutely thrilled I was to see the commercial for Requip - finally, a way to describe what I was feeling. I can honestly say I don't recall ever even hearing about RLS in nursing school and it was only 12 years ago!
I suffer from RLS symptoms periodically. Sometimes I think it goes into remission. I don't even know if this is possible but it seems like it happens. Anyway, its back with a vengeance and when it returns I become symptomatic @4-5 nights a week. Unfortunately, thanks to my knee pain, it's just that much harder to "walk it off". I've tried Requip for @3months but developed severe side effects causing me to stop taking the medication.
My question is, does anyone know of any other medications I can try? Also, does anyone have any "remedies" or helpful hints that they've tried that seem to help relieve symptoms. Other than walking, I've tried heat (I put one of those beanie heat pillows in the microwave and set it to scorch) then apply it to my leg(s). It just feels better to have a sensation on my leg(s) other than the RLS symptoms. I also sometimes use a massager.
I apologize for the lengthy post. Thanks so much for all of your help. It is so greatly appreciated! ~ Jenn :lol:

ctravel12
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Joined: Mon Jul 03, 2006 2:02 am
Location: Lake Havasu City, Arizona
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new here and need some help

Post by ctravel12 »

Hi Jenn Welcome to this site. I used to take Requip and did not agree with me. I am now taking clonazepam and it is helping me. I know other members take Mirapex (if I am not mistaken has been FDA approved). You may want to talk to your dr about this. When you were taking the Requip it sounds like you were augmenting (have rls anytime of the day and night)

We also have a good forum New to RLS "Managing RL" There is also some good info to read on the Mayo Clinic Algorithim. You may want to copy this info before seeing your dr. I know alot of other members have done this and know other members will post and give you some wonderful advise.

Please do not apologize for the long post as we are more than happy to hear from you. I hope that you will get the relief that you so deserve. I know that being sleep deprived can be miserable as that had happened to me. With this med I am taking now, I sleep better but now and then my sleep habit is not the best but cannot complain as I am doing much better then when I was taking Requip.

Welcome again and please keep posted on how you are doing.
Charlene
Taking one day at a time

brandy
Posts: 350
Joined: Tue Jun 20, 2006 4:44 am
Location: Kentucky

Post by brandy »

Hi and welcome. So sorry to hear about all of your struggles. I'm sure your grimacing and asking, "What next?" One thing you might want to consider is that antidepression and antianxiety medications (particularly tricyclics, tetracyclics and SSRIs) can often cause RLS symptoms to worsen. Three that seem to be safer are Remeron, Serzone and Wellbutrin. Charlene was right about the algorithm. It will give you a whole list of things to try with your doc. You might also go to www.rlshelp.org, which has a list of medications that exacerbate RLS (such as Benadryl). Caffeine can be problematic for some of us as well. I know that's a lot of info thrown at you at once, but, for me, I wanted to try to eliminate any possible cause of my symptoms as they were enough to send me completely over the edge. Please let us know how we can help and how you are doing. Welcome to the family.
At times our own light goes out and is rekindled by a spark from another person. Each of us has cause to think with deep gratitude of those who have lighted the flame within us. Albert Schweitzer

Rubyslipper
Posts: 992
Joined: Wed Mar 24, 2004 2:53 am
Location: Missouri

Post by Rubyslipper »

It wasn't that long ago really that I first found this board and was amazed at the support and compassion I found. It makes me so proud to be a small part of it now when you can get such good advice from two people who are fairly new here. I'm sorry you are having problems with RLS but the info they have given you is sound. This is probably the best board anywhere to get advice, support and friendship. We are all aware that while we are not doctors and cannot tell you what to do, we can give you our experiences and you can take it from there. Educate yourself with sound information and take it to your doctor. You may have to try several doctors, several medications or a combinatin of meds before you find relief. Just because a med has been FDA approved for RLS doesn't mean it is the only one out there. There are many off-label meds that work for RLS. It will take some time but you have people here who will help you through the tough times. You've already met two of them. They are great and there are others here who will help also. At least you know now what you are fighting. That's a big part of the battle.
You've always had the power my dear, you just had to learn it for yourself! (Glinda of Oz)

cornelia

Post by cornelia »

Personally I think the info on the Cal. website about AD's is a bit 'old'.

On Remeron research is done and it is a no-no now for RLS (exceptions possible of course).

Dr. B mentions nowadays Wellbutrin, possibly Trazodone and Desipramine.

Corrie

brandy
Posts: 350
Joined: Tue Jun 20, 2006 4:44 am
Location: Kentucky

Post by brandy »

Thanks for the update, Corrie. I did not know that Remeron had been taken off the list. I will make a note. Where would you suggest finding updated med info like this?
At times our own light goes out and is rekindled by a spark from another person. Each of us has cause to think with deep gratitude of those who have lighted the flame within us. Albert Schweitzer

brandy
Posts: 350
Joined: Tue Jun 20, 2006 4:44 am
Location: Kentucky

Post by brandy »

Oh, and my doc gave me Trazadone for sleep (before I was diagnosed) and it made my legs go insane, so it's not totally safe for RLSers.
At times our own light goes out and is rekindled by a spark from another person. Each of us has cause to think with deep gratitude of those who have lighted the flame within us. Albert Schweitzer

sugbrendas
Posts: 234
Joined: Thu Aug 05, 2004 7:28 pm
Location: Balto.
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Post by sugbrendas »

The only thing i can take is the Klonopin,i call that my main drug with a back up of Ultram and another backup of Niquil.
Hey what can i say it works for me but everyone is different.

I couldn't take any of the Parkinson's meds.

Any chance your pain pill gave you the relief some nights? Some Doc's prescribe percocets for RLS.It's something to think about and might be a start to figuring out what works for you.
I was on percocet for 1 month with the Klonopin during a relapse,it did help.
Finally able to sleep on average 9 hours a night!
Brenda

cornelia

Post by cornelia »

Brandy,

once a week I read the letters from patients to dr B and I have learned a lot from dr B's answers. And so I have seen that he used to say that Remeron is safe for RLS, but not anymore. Probably because research has shown that it can induce RLS. He actually said thet Trazadone can be RLS-friendly, but not for everyone, like yourself and I had the same experience with it.

Corrie

brandy
Posts: 350
Joined: Tue Jun 20, 2006 4:44 am
Location: Kentucky

Post by brandy »

Thanks, Corrie!
At times our own light goes out and is rekindled by a spark from another person. Each of us has cause to think with deep gratitude of those who have lighted the flame within us. Albert Schweitzer

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