Pain with RLS

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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IMTONIF
Posts: 4
Joined: Mon Nov 13, 2006 11:15 pm

Pain with RLS

Post by IMTONIF »

I've had RLS for over 40 years. Called it 'jumpy legs' and took Robaxin (muscle relaxant) to control the periodic occurances for years. Seemed to work well. Discovered it actually had a name a couple years ago. People still give me strange looks when I say I have RLS. In past year or so it has gotten SOOO bad. Occurs like clockwork every night. I'm on 1 mg. of Requip and that usually helps after an hour or two. Problem is it often puts me to sleep and if I have to take it at 6 or 7 - there goes my evening. But my BIG problem is the pain that is now associated with it. My feet ACHE at night. Often it moves up my legs and seems especially bad in a knee injured by skiing some years ago. So besides the 'jumping' the pain is getting worse and worse and often over more of the day. I'm taking tylenol and codein which helps migraines but at times doesn't touch my leg aches and pains. Going to make a follow up with the doctor as I've only been on Requip since about January or so. But this pain is on the new side and REALLY ACHES. My question being, is this a symptom others have experienced or might it be a different problem entirely? I had the needles in the legs with electric shock to be sure there is no neuropathy and that test was fine. So, is pain one of the symptoms of RLS for others? - Toni

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

Post by ctravel12 »

Hi Toni and welcome to this group. I am happy that you found us, but sorry that you have rls.

You mentioned that you are taking 1mg of requip since January and you are getting the symptoms more frequently. You may be augmenting which is having rls 24/7 and painful. That happened to me last year when I was on requip. Some people have the creepy crawling feeling; however pain is part of rls as I have the pain too.

The forum that you are on look at the stitcky post "Managing RLS" The Mayo Clinic Algorithm has an excellent article. Please read it and if you are able, please print it out and bring it to your dr. Another good site is www.rls.org

Please keep us posted on how you are doing. You may have to try a cocktail of meds to see which ones work for you. I am not a dr nor have any medical knowledge but just from reading alot of the different posts. One thing to remember is what works for one person may not always work for someone else. I hope that you find the relief that you so deserve.
Charlene
Taking one day at a time

SquirmingSusan
Posts: 3028
Joined: Sun Nov 12, 2006 4:08 am
Location: Minnesota
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Post by SquirmingSusan »

Hi Toni,

I rarely had pain with my RLS until I took Requip. Even after I quit taking it I have had terrible pain. Not only that, it made my RLS much, much worse. Now I take methadone, and it takes care of both the pain and the RLS, and it has way fewer side effects.

I would call your doctor ASAP and tell him/her what's happening, and see if you can switch to another med.
Susan

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

Post by Rachel »

Hi Toni,

I have RLS and limb movement. I also have that pain that you are talking about. Mine started in Dec. 05. Like you, my nerve conduction tests and my MRIs came out normal.

My RLS doctor and the other two neurologists are all telling me that this pain is not directly associated with RLS. The physical therapist I went to didn't want to listen to me.

The only relief that I have found is through a chiropractor that specializes in pain management. She does a lot of heat therapy, cold laser therapy, electrical stim, etc. There is no set pattern as I don't think there really is any protocal for this. Some weeks it works better than others.

She believes that this is a type of fibromyalgia that is indirectly caused by the RLS. So far, she has been the one that has made the most sense to me.

Also, the pain has gotten better since I moved my mirapex dosage earlier in the day and I am not doing heavy exercising past 6:00 at night. I honestly don't know if these are coincidences though.

Just wanted to give you some info to think about. Good luck.

Rachel

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

Post by Rachel »

Almost forgot--my Darvocet does nothing for my pain either. It strictly helps reduce the limb movement.

Rachel

Hap
Posts: 2
Joined: Sun Aug 19, 2007 2:13 am

Living with the pain

Post by Hap »

Hi,

I have RLS, which I have had for many yrs. Many yrs ago I used to have what can only be called pins and needle pain across my back. Had many Doctors told me it was all in my Head? That went away and the RLS; which at the time I don't know, started slowly in the afternoon and through out the night. It got worst and my family Doctor tried many types of Meds till one started to work called, Sinemet CR 50/200 TAB. Now the worst started to happen to my health, my Family Doctor started to have second thoughts on my Med, and decide to pull me off my meds, which left me with very bad pain and sleepless nights. Though out the next few yrs I went through many Doctors that first prescript meds then pulled me off, mostly due to the Health Industry thoughts on cost; HMO's, etc. I haven't had a family doctor for yrs now because of this, and the only one that has helped me with this problem is a Neurologist based in Frederick, Md. He has me on Requip 1MG TAB. He has stated that one can become immune to Sinemet and end up taking higher dosage, with Requip the chances are less. I take it around 9PM, tho I'm already in a moderate pain by then, very hard to sit or lay down, tho I wait till the last moment knowing how much sleep I get using Requip. I sleep till about 4AM, sometimes on the weekend till 5AM, if I'm lucky. Its not much sleep, but I'm sort of used to it by now. I have tried once, on the weekend to not use it, very bad idea, the pain almost put me in the hospital, and I thought I was going out of my mind, my legs would not stop moving and the pain shot up from my feet to my back. One is very tired after this ordeal.

SquirmingSusan
Posts: 3028
Joined: Sun Nov 12, 2006 4:08 am
Location: Minnesota
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Post by SquirmingSusan »

Hap, welcome to the forum. Sorry you have this miserable condition.

One thing I wanted to mention is that there are 2 dopamine agonists that are approved for RLS - Requip and Mirapex. Mirapex has a longer half life, so you may want to try that instead of Requip. You may get more sleep that way. There is also the Neupro patch, which works 24 hours a day, is a dopamine agonist like Requip, but has only been approved for parkinson's. It works the same way though.

Check out the sticky post at the top of this section. There is a lot of great information there, and there is a link to the Mayo Clinic Algorithm. That talks about the various treatments available to treat RLS.
Susan

Sojourner
Posts: 1657
Joined: Tue Dec 05, 2006 5:56 am
Location: USA

Post by Sojourner »

Hap, Ditto. Welcome to the forum but sorry to hear that things are not going well for you at the present. You'll find lots of good information and kindred spirits here. Best wishes.
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