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Medical marijuana and my PMR journey

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kayfromtheus
kayfromtheus

I’ve had PMR @ 2 years and elected not to take the daily treatment of Prednisone for a variety of reasons. I only take Tylenol #3 as needed but usually at the end of the day as I just tried to “tough” it out during daylight hours. I have all the miseries of everyone else who has this invisible disease and like you continue to look for things to make life bearable. I too, want what I had before the diagnosis.

I live in a state in the US that allows medical marijuana. I qualified because of PMR and also PHN (post herpetic neuralgia-pain in nerve plexus after shingles). I asked my primary Dr. if he would refer me and he agreed.

I started in April with no visible results and was deeply disappointed. Getting the right dose, especially with the different delivery methods available-vape, tinctures, edibles, transdermal, etc. was/is tricky. At one point I just gave it up as not going to work. After other online research on how to find appropriate doses I finally settled on the tincture as I could minutely administer tiny doses until a desired effect was achieved and it finally worked. Frankly I was shocked. I had been titrating during the day and taking stock and just when I was ready, again, to give up-I found I was pain free.  Shocked!!!

I don’t know if it is the anti-inflammatory effect of the CBD and THC stopping the pain at the source or if the Medical marijuana is blocking pain at receptors. I just don’t know but I haven’t had a Tylenol #3 since 5/7/2018 and in the state I’m in right now (the pain is in both hips, low back and sacral area) I would have had to use them.

It’s still early days for me as I continue to learn, tweak and experiment but it has made a huge, huge difference in my days and nights. I actually cleaned the stairs 2 days ago and could do it with no pain. I’m easier to live with, not nearly as irritable from pain and aching.

The formula I am using is a 1:1 ratio of CBD to THC. I don’t like the feelings I get if I take a dose a bit too high. I lose my memory and feel a bit spacy. It doesn’t last too long though and I carefully note everything in my diary.

My goal is to find the right dose, pick up life where I left it 2 years ago and escort this disease into permanent remission.

I am sorry to say at this point there has been no effect on the pain from shingles but I’ll take what I can get.

 

1 like, 15 replies

15 Replies

  • EileenH
    EileenH kayfromtheus

    Posted

    I have to express a bit of scepticism - Tylenol almost never has any effect at all on PMR pain. If it is primarily low back, hips and sacrum I'd be inclined to wonder if it is myofascial pain syndrome rather than PMR itself. 

    However - if it has helped you with YOUR pain, who am I to criticise? It won't help me - even though it is allowed where I live, I couldn't afford it!

    • kayfromtheus
      kayfromtheus EileenH

      Posted

      The Tylenol #3 mentioned above has codeine in it. It is that medicine that helped with my discomfort. The pain moves around as you know. Previously it was in both shoulders and base of neck, I'm rather sure it's a case of PMR we're treating. I've had the blood tests and a trial of Prednisone on diagnosis that are recommendations for documenting this disease.

      Perhaps as the newness and hyper-focus on medical marijuana balances out the price and availability will be something  everyone who needs it can have access to try it for themselves.

    • EileenH
      EileenH kayfromtheus

      Posted

      Even patients on opiod painkillers find they don't help with PMR! Having PMR doesn't mean you are excused from other problems - for many people the muscle spasms that are associated with myofascial pain syndrome and which are often found alongside PMR would be relieved by plain painkillers.

  • mjhollywood
    mjhollywood kayfromtheus

    Posted

    Wow. That’s great.   I live in Florida.   Which it just came legal but it’s my Job.  We get drug tested and since it’s not approved. Federal . The company says no!!! I would love to go that route.  So happy for you. Keep us updated cause many on this site hate the effects of predsone !!!!  Mj 
    • kayfromtheus
      kayfromtheus mjhollywood

      Posted

      I, fortunately, am retired and  don't have to take that into consideration. I will keep you posted as things evolve over time and I can offer any valid insights.

  • Michdonn
    Michdonn kayfromtheus

    Posted

    Hi kayfromtheus, I to live in a state where medical marijuana is legal, please keep us advised of your progress. Good luck, stay positive and smile. ??

  • Anhaga
    Anhaga kayfromtheus

    Posted

    Interesting.   I believe it's CBD which provides the strong anti inflammatory effect.  The other may make you "forget" the pain but I don't know if it has a direct effect on inflammation.  Could be wrong, of course.  CBD has been shown to have a remarkable ability to treat even the strangest things, like intractable epilepsy in children.  So I hope you continue to post about your experience as time goes by.

    • ptolemy
      ptolemy Anhaga

      Posted

      I thought it was the tetrahydrocannabinol (THC) the bit that creates the cannabis high with the CBD that worked best and but is illegal in UK. I know one child with seizures was trying to get the government to allow him to use it though, at least his parents were. 
    • Anhaga
      Anhaga ptolemy

      Posted

      Could well be they work best together.  I know that there are many other compounds in this valuable plant.
    • Anhaga
      Anhaga ptolemy

      Posted

      If medications using addictive and dangerous opioids are legal it seems absurd that the medications derived from this plant are still verboten.
    • ptolemy
      ptolemy Anhaga

      Posted

      I totally agree. I don’t know why the UK government have this hang up on cannabis. 
    • Michdonn
      Michdonn Anhaga

      Posted

      The US federal government still has a hang up on marijuana also, it is the people in individual states that are pushing for legalization; the list of state grows each year! ??

    • Anhaga
      Anhaga ptolemy

      Posted

      They are just a bit slower than other places in coming around.  Legalization of recreational .... hasn't happened in Canada yet (supposed to be this year) although the medical version has been available for several years, very highly regulated.

  • Danrower
    Danrower kayfromtheus

    Posted

    thank you for this information! i will begin research. Anyone else out there tried this, or other delivery methods?

    Dan

  • marla.090252
    marla.090252 kayfromtheus

    Posted

    Hi Kayfromtheus!  I too live in a State where Medical Marijuana is legal.  My MMJ doc said it would take a while for me to figure out what worked for my PMR.  I finally, like you fell into tincture, and I do vape with my Firefly 2.  My dispensary usually has CBD:THC hybrid, and CBD separate, and obviously THC flower buds.  I finally started to make my own tincture from the ABV (already been vaped) flower because there is lots of cannabinoid left over.  Even after I extract from the alcohol (freezer method - low and slow) there is still some left in the mush that I use to make budder, then some edibles.  I make gummies, no sugar (or fake sugars), they are easily transportable.

    I found that if I can keep up with the cost of the dispensary MMJ, I can succeed in pain relief, like yourself!  You do need the THC, maybe in a lesser amount if you are feeling a slight buzz, because of the entourage effect they have on each other.  Altho I have heard some MMJ users get marvelous relief just from CBD. 

    Congratulations on finding Med. Marijuana for relief!  I know it works, too!

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