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A MyMSTeam Member asked a question 💭
Bakersfield, CA

Does anyone else find it difficult getting your pain treated? How do you get the help you need?

July 6, 2016
 · 
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A MyMSTeam Member

Unfortunately I have had to resort to the Fentanyl/Duragesic patch. Due to the fact that I have a very bad case of Irritable Bowel Syndrome, I am unable to take any type of anti inflammatory medications at all. This includes any over the counter medications like Aleve, Motrin etc. or I live in the bathroom. After being on it at a high dose of the Fentanyl for the past 4 years, I have decided to wean off of it. I was on 150 mcgms every 48 hours. Since January 2016, my pain management doctor suggested that I try the medical marijuana because it helped some pain and not other types of pain (if this makes any sense). I had to think long and hard about this, but I am glad that I did. In January 2016 I was on 150 mcgms every 48 hours. Regular dosing of the Fentanyl is supposed to be changed every 72 hours and I was on every 48 hours. Since I have been on the medical marijuana, I have gone down so much. I saw my pain management doctor today, and I went down to 25 mcgms every 72 hours. Hopefully next month, I will go down to 14 mcgms every 72 hours and will not be on it at all in September. Truthfully, the past 4 years being on such a high dose of Fentanyl, I was sleeping my life away. Sometimes, because I was sleeping so much, I would awake with pain and did not change the patch when I was supposed to and went into major withdrawal which was horrible. Now I get up earlier in the day and have more energy. I still need to take little naps during the day. My husband and kids are happy to see me up and about more during the day. Everyone is different. I wish you luck on your pain management journey. It is rough when you have so much pain and do not know which route to take. I hope this was helpful to you.

July 6, 2016 (edited)
A MyMSTeam Member

I have been on the medical marijuana program since January 2016. Prior to that I was on the Fentanyl patch for 10 years. My dose was high. I was on Fentanyl, 150 mcgms every 48 hours instead of 72 hours. I am happy to report that I have been Fentanyl free for the past 3 months. I use the medical marijuana vaporizer. Last week I went from the cartridge vape to a regular vape that is the "bulk oil" which is so much better. The pills did not work for me. I am on the highest dose of the medical marijuana which is "red". My pain management doctor is also hoping that it will give me an appetite being that I lost over 100 pounds from last year to this year and am still losing weight. I also have had Irritable Bowel Syndrome for the past 30 years, which is not helping my weight loss issues. I never tried to smoke marijuana. It took a month before I was willing to try the medical marijuana because my biological mother (that I have never seen or met) took street drugs including marijuana to terminate the pregnancy. I was born with many birth defects including the loss of fingers and toes. I have one finger and thumb on each hand for a total of 4 fingers! But I never let that stop me because I type 80-90 words per minute, taught myself calligraphy, crochet blankets and prior to MS, I was a 215 bowler. I highly recommend the medical marijuana because it helps me with the pain a lot. The medical marijuana program (Vireo Health) is actually publishing my story/experience on how the medical marijuana as well as my disabilities in their newsletter. I will let everyone know when it happens! Again, I highly recommend it. I heard that the edible marijuana is good, but I have no where near my home that sells it.

November 20, 2016
A MyMSTeam Member

So far I've been able to manage my pain with naproxen. I hope you find relief.

July 6, 2016

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