Frantic...RLS 24/7

For everything and anything else not covered in the other RLS/WED sections.
barbeegee
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Joined: Thu Apr 26, 2018 1:29 am

Frantic...RLS 24/7

Postby barbeegee » Tue May 15, 2018 1:06 pm

For years I've had RLS at night, but now, after my April 6th spinal surgery (not sure if connected) I have it 24/7--night and daytime. The doc gave me gababentin and some other prescriptions but they all make me sick...nausea and shaking... doc refuses to give me valum or xanax because I'm over 65. So I'm between a rock and a hard place. Going crazy. I have oxycodone left over from my surgery but am afraid of addiction as well as the inability to get more when it's gone. That's all I'd need at this stage of my life. Any suggestions greatly appreciated.

I have an appt with a neurologist at the end of June...long time to wait...but I'm afraid he's only going to prescribe the same meds that make me sick....gababentin, etc. Has anyone had any successful treatment with non-prescription meds or something not addictive? :(

Polar Bear
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Location: N. Ireland

Re: Frantic...RLS 24/7

Postby Polar Bear » Tue May 15, 2018 3:56 pm

I'm so sorry that you are suffering.
Sometimes symptoms do indeed seem worse after surgery.

Some types of medications used as part of the anaesthetic can worsen RLS symptoms. Also if there was blood loss this might cause iron levels to drop and this could worsen RLS symptoms

On the other hand usually the pain relief provided to relieve the pain following surgery works well to keep the RLS under control.
I note that you do have some oxycodone left over from your surgery but don't wish to take it.

Unfortunately when RLS is very severe it is unlikely to that you would find successful treatment with non prescription medications.

You might try for distraction from your symptoms, really concentrating on doing something.
Have you tried the cold water/hot water treatment. This is what I have done at times.
Fill a bucket or a large container with icy cold water, the deeper the bucket the better. Get your legs into the icy water. It should be cold enough to take your breath away. Use a cloth to drag the icy water up your legs and stick it out for about 20 minutes. This used to be sufficient to calm my legs for a little while.
Others prefer the hot water method. Use the shower head to run hot (as hot as you can bear it) over your legs and see if you get some easement. You could try a really hot bath. But not unbearably hot.

Walking, walking, walking.
If you are having symptoms 24/7 (like me) you have my sympathy.
Betty
http://www.willis-ekbom.org/about-rls-wed/publications
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

Rustsmith
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Re: Frantic...RLS 24/7

Postby Rustsmith » Tue May 15, 2018 5:42 pm

Your concern about having a problem with continued access to an opioid is well founded. Many of us who take them on a regular basis have to struggle to maintain access, either from our doctors or our pharmacies. And the problems appear to still be getting worse as the media, the politicians and the government regulators continue to fan the flames while ignoring those of us with really need these valuable medications.

However, your concerns about addiction may be greater than need be. In the recent paper about the proper use of opioids to treat RLS, the combined experts wrote a section that included this statement:

In a study of nationwide US medical and pharmacy claims to Blue Cross and Blue Shield insurance companies in 2015, the rate of opioid use disorder (addiction) in patients taking low-dose opioids for more than 90 days was 6/1000 patients, compared with 40/1000 patients using high-dose opioids, an almost 7 times lower frequency. Low-dose opioids were defined as less than 100 mg morphine or equivalent per day, an upper limit far higher than that recommended for RLS, suggesting that the rate of opioid use disorder in patients with RLS may be even lower.


This does not mean that the risk of addition when using an opioid to treat RLS does not exist, but this would indicate that the risk is far less than what the media and politicians would have you believe. There is even a statement in the paper where they discuss using opioids to treat individuals who are known to have addiction problems where they state that although a bit more challenging, even this can be accomplished if done correctly.
Steve

Augmentation Evaluation http://bb.rls.org/viewtopic.php?f=4&t=9005

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

barbeegee
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Joined: Thu Apr 26, 2018 1:29 am

Re: Frantic...RLS 24/7

Postby barbeegee » Wed May 16, 2018 12:32 pm

Thank you. Before I read this I buckled and took one half of one of my Oxycodone....I was desperate for a good night's sleep and I got it. Maybe I'll slip a night and take it tomorrow. I don't want an addiction and alcoholism runs in my family and is the reason I don't drink.

I got a wonderful night's sleep and the no pain or discomfort of my back was a plus too. But, yep...I'm afraid of addiction and the wonderful night's sleep would be enough to do it.

ViewsAskew
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Location: Chicago

Re: Frantic...RLS 24/7

Postby ViewsAskew » Fri May 18, 2018 8:22 am

I love the sleep I get from opioids. But, I have no desire to take MORE opioids. I just want the sleep. Addiction is craving the substance so that you take more and do anything to get more. There is a small chance that you would become addicted. My dad died of alcoholism and abused drugs - it scared me, too. But I could tell early on that it wasn't going to be an issue. We even have had a couple addicts here who used methadone without issue.
Ann - Take what you need, leave the rest

Managing Your RLS

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.


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