Pain relief and medical marijuana

[Moderator Profile]

Because there have been no clinical trials testing the use of marijuana for pain relief in PKD patients, we are unable to comment as to its effectiveness on pain related specifically to PKD.

[mhuard]

See a pain specialist! My kidneys are so huge I was having constant side, rib and what I thought was hip pain. I am extremely active I am a pediatric oncology nurse, I do agility with my dogs, I have 2 horses, I sail and I garden. It was becoming extremely difficult to continue with the things I love.....I now take buprenorphine with great relief !! I am 60 yo and plan on staying as active as I can for as long as I can !! My patients inspire me and if they can buck up and do it so can I....thanks to proper pain management. So don't be afraid to take the meds you need ultimately they can enhance your life!

[Violet87]

That makes sense. Thank you for your response!

Violet

[Tiffini]

Hello,

Thank you for your question! I have found that the subject of medical marijuana is sometimes a difficult one to bring up. I am glad to know someone else out there is getting some relief with it. I was diagnosed when I was a kid and have experienced chronic pain since about age 14. Due to so many hospitalizations on morphine drips, narcotics have had less and less of an effect on me. I'm allergic (with anaphylactic reactions - found out the hard way on those) to several narcotics, so there isn't much my doctor can do other than prescribe higher doses of pain meds that work. It got to the point where I was taking so much pain medication that I had no appetite, was vomiting (on top of already having abdominal pain - ouch!) and had an automatic bolus button prescribed every time I went to the E.R. I hadn't used marijuana since college, but it was my husband who suggested I give it a try. We found a person in my area who grows specific strains that would aid my pain without making me loopy. I have experienced a great deal of pain relief from it. The ability to relax my back muscles when my kidney spasms and get sleep at night through the pain is amazing. I do still have to go to the E.R. sometimes from too much pain that isn't able to be controlled at home, but I'm thankful that those visits are less often than they use to be. I wouldn't recommend marijuana for everyone, but I can attest to the fact that I have found relief from use. I hope you continue to experience results!

[Violet87]

Tiffini,

Thank you so very much for your reply! It seems as though your experiences have been very similar to mine. I have read that those of us that were diagnosed in childhood experience more pain and an increased progression of the disease. I have had the exact same issues with narcotics, and having doctors prescribe scary high doses of these pills. I also had zero appetite and constant vomiting associated with the narcotics... it became such a nightmare that I don't want to go anywhere near them again. I am so happy to hear that you have found relief through using marijuana. Can I ask what strain you have found works best for PKD pain? Medical marijuana was just legalized in my state, however PKD is not yet on the list of approved conditions (although we are able to petition that it be added, which can be up to a six month process). Thank you again for your reply, it is truly comforting to know that there are others out there experiencing the same thing.

-Violet

[heather]

I am 18 I was diagnosed at 15 and yes I smoke weed. And yes it is the only thing that helps! It makes me relaxed and lose tension in my back, sides, and stomach. I hurt allll the time, and tylonal just don't cut it. I think they should make it so that people with pkd are able to smoke legally, it's only fair. There is nothing else that helps.

[Guest]

For anyone living in Illinois: PKD is currently not listed as a qualifying medical condition included in the Cannabis Pilot Act in Illinois. However, the state is currently accepting petitions to add medical conditions. The committee will review petitions twice annually. The first deadline is coming up: February 28, 2015. If you miss this deadline and PKD is not approved the first time around, the next opportunity to send in petitions will be in July. I strongly encourage all PKD patients who are Illinois residents to apply to get our disease added! Here is the link:

http://www.idph.state.il.us/HealthWelln ... itions.pdf

[Guest]

For those interested: the Illinois advisory board for the Cannabis Pilot Program Act met for a hearing on Monday, 5/4 to review and vote on 14 different conditions that were petitioned to the state to be added to the list of debilitating conditions. PKD was approved by the board with a unanimous 10-0 vote.

[dealingwithPKD Profile]

[Guest]

Is there anyone reading this thread who is interested in getting PKD approved in New Jersey? I have spoken with a PKD patient on another site who is seeking to get medical marijuana approved in NJ. There is truly power in numbers. We need to speak up to get our condition added. If anyone reading is from NJ, please reach out! Thanks so much!