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Real members of MyMSTeam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.
A MyMSTeam Member asked a question 💭
Augusta, KS

How are you all dealing with your pain? Mine is horrible and I loathe the idea of starting narcotics at the age of 33. I take a high dose of Neurotin 3x/day, which helps with the nerve pain, but not the muscle and joint pain. I am resistant to muscle relaxers - I took 80mg of Baclofen each day before we discovered it wasn't helping. My doctor and I have been talking about a Butran patch, so I guess I'm asking for your input. I've tried a custom made muscle relaxant/anti inflammatory cream, which… read more

July 6, 2014
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A MyMSTeam Member

I know it's counter intuitive but exercise and movement helps the most. I know it is what you think you can't do because of the pain but you have to make yourself do it or it becomes a downward spiral really quickly. Find the drug that helps the most and F's with your mind the least just to take the edge off then break it in half take it and then move. Dance, swim, play Wii. In the beginning it really sucks but the more active you are the less pain you feel. I'm not saying your pain isn't real I know it is and there are lots of studies that show real pain is reduced with movement / exercise. It's a combination of endorphins and the mind's ability to stop recognizing the pain stimulus.

July 6, 2014
A MyMSTeam Member

I was on zanaflex and soma together and the zanaflex was a life saver but had to go off as it was turning my liver enzymes wacky. I just started tegertol on Thursday but I dont think it's working my doc did tell me it can take up to a couple months to really kick in and im not on my full does yet. I get what your saying about the narcotics. I had having to take so much medication and im only 27. But its what gives me the ability to get out of bed most mornings on my own. I hope they find something for you!

July 7, 2014
A MyMSTeam Member

I take Nucynta (tapentadol) it is used to treat moderate to severe pain. The extended-release form of tapentadol ( ER) is for around-the-clock treatment of pain that is not controlled by other medicines. 
You can go to drugs.com to look up more info. But I've been sensitive to other medications, either severe rebound headaches, nausea, or extreme drowsiness. I was told it is usually prescribed when other meds aren't tolerated well. It helps at reducing the pain without the high feeling of hydrocodone or any variation of it. It's worth looking into.

July 6, 2014
A MyMSTeam Member

Wow! I'm so lucky to have found this group! I've gotten quick and useful answers to my question, so thank you! As far as exercise goes, I do yoga as well as walks with my dog. I also stretch multiple times each day to try and alleviate some of the tension/pain. I have also discussed Nucynta with my doctor. I'm calling my insurance company today to see if my plan covers that or Butran is covered.

July 7, 2014
A MyMSTeam Member

Have you tried Lyrica?

July 8, 2014

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