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Ankylosing Spondylitis

Discussion in 'Medical Discussion' started by ShovelHead, Dec 23, 2016.

  1. ShovelHead

    ShovelHead Bikes don't leak oil, they mark their territory!

    Messages:
    75
    Who on FC has Ankylosing Spondylitis AS? How long have you had it? What kind of symptoms do you have?
    :leaf: Medical Marijuana? :leaf: What strain helps you?
     
    lazylathe likes this.
  2. Squiby

    Squiby Well-Known Member

    Messages:
    1,218
    I was severely poisoned by campylobactor bacteria contaminated lettuce in a Caesar salad from a restaurant in the spring of 2015. After the initial poisoning and resulting (liver, kidney and pancreas) organ damage, a series of conditions set in. One was intense random shooting stabbing neurological pains all over my body, except for my head. Another symptom was non responsive reflexes and the development of a reactive arthritis the Drs diagnosed as AS.

    It started two weeks after the initial poisoning. I woke up one morning to a stiff neck. Very stiff. I could not turn my head. The next morning the stiffness continued down to my shoulders and upper back. By the third day my entire back from the base of my head down to my hips were frozen. I was unable to get out of bed by myself and the pain was unbearable. I could just barely walk a shuffle with the help of a cane. My feet were so cramped up that I couldn't wear shoes. Couldn't drive or negotiate stairs. I was almost completely disabled. Family and friends cared for me for one full year.

    Endless scans, blood tests and the opinions of three specialists and my family Dr ensued.

    Morphine or Oxycodon was the treatment along with Baclofen and a few other drugs that I can't remember now. These drugs never really killed the pain but I was too stoned to care.

    Anyway, it's been a year and a half now. I am able to care for myself now and am off all the drugs. I seem to be recovering and both my liver and kidneys are normal now. The pancreas is limping along. It dosent produce insulin or digestive enzymes properly and I have been in and out of the hospital repeatedly this last fall dealing with it. I inject insulin and take digestive enzymes to help it along. There is a slim possibility that it will heal like the liver and kidneys did, and I am taking copious amounts of supplements to support its function and general immune function.

    All of this has left me with residual pain and devastatingly low levels of energy.

    Weed has truley been a Godsend. I don't know how I could have made it so far without it. I toke all day long, every day, every few hours or so. Sativa through the day gives me the energy I need to get things done. Indicas at night give a restful sleep. For pain, I have tried several strains and two stand out for me; Remedy is a high CBD strain that melts the pain away during the day. It is a light high and mixes well with Sativas. Harlequin also works for me during the day.

    Violator Kush is a heavy hitter favorite for nightime but lots of other Indicas work as well, cause I'm just going for a knock effect anyway.

    I try to toke the smallest effective amount possible. I feel as if higher tolerance dulls the effectiveness, so I am always trying to keep doses low. I also switch up strains regularly which seems to help effectiveness as well.

    The medical community really has very little to offer me. They can offer blood tests to chart my progress and scans to see the physical images of the organs and beyond that it is really just debilitating painkillers, which I no longer use at all. The morphine is in the cupboard, but it stays there. I feel like I'm on my own with this condition but I do feel like I am slowly recovering or at least holding my own. If you are interested, I can outline my extensive suppliment routine that I feel has gone a long long way to help reverse this horrid curse.
     
  3. Baron23

    Baron23 Well-Known Member

    Messages:
    2,006
    Thank you so very much, @Squiby
     
    ShovelHead, lazylathe and Squiby like this.
  4. lazylathe

    lazylathe Almost there...

    Messages:
    2,488
    Location:
    Ontario, Canada
    I was diagnosed with AS when i was around 25.
    It all started with shooting pains down my left leg and the inability to get out of bed and walk.
    These pains came and went for a few months until they were too much too handle and i needed help with just dressing myself.

    After numerous x-rays and blood tests i was told i had a blood marker HLA-B27.
    The next news was pretty awesome as well, my sacroiliac joints were already starting to wear away.

    The treatment plan was given to me and at the time the treatment was with a certain drug that i cannot remember the name of... Started with a V and was quickly removed from the market.
    I took it for a while but it made me feel so much worse, so i stopped.

    Started to go to the gym, swim and play racquet sports again which helped a lot with flexibility.

    My Dr then wanted to place m on Biologics...
    So off i go to have the Tuberculosis test which came back resoundingly positive! A massive lump of crazy itchiness on my inside arm!!
    I go to the Dr armed with my vaccination chart which clearly states i was vaccinated against TB as a kid so i will always test positive.
    No worries the Canadian Dr says we will put you on this medication for 9 months, no monitoring, and you will be good to go! Remember, I DO NOT HAVE TB!! Chest x-rays proved this many times...

    So i start a course of Isoniazid for 9 months. If you are on this medication, do yourself a favor and read up on it...
    After 6 months on the drug i had heart palpitations, difficulty breathing and was admitted to the emergency ward at the hospital.
    Lots of test and vials of blood later and a super long needle in my stomach they figure out the Isoniazid is causing all of this...

    I was supposed to have monthly blood tests to monitor the drug but the Infectious Diseases Specialist decided i did not need to do them...

    So i quit that and have never tried the Biologics... They also come with a arm length list of cautions...

    So today i medicate with MMJ and it helps a lot with the pain and inflammation.
    Naproxen helps a lot as well at times but i try and stay away from all and any pharma!

    Since starting to vaporize i find that the analgesic properties of heavy Indica's last me throughout the day most days. I do not medicate during the day, only after work at night.

    I have also found that changing my diet has helped a lot with pain and inflammation flare ups!
    Cut the sugar and starches as much as possible. Stay away from french fries and tomatoes and anything from the Nightshade family. Drink water every day and as much as you can tolerate.

    Also good to do Candidae yeast test!

    Apple cider vinegar is also supposed to help with inflammation.

    Tumeric has also helped me with inflammation.

    And last but not least, try and keep your posture as upright as possible even though rounding your spine makes your back feel great! In the future you will tank yourself!
     
    ShovelHead, 6079Smith and Squiby like this.
  5. ShovelHead

    ShovelHead Bikes don't leak oil, they mark their territory!

    Messages:
    75
    I was diagnosed with AS in 1985, it was 2 yrs after I got out of high school. It started with low back pain and as of today (31yrs later) I have full blown AS. I've been on just about every drug there is under the sun for AS. I've taken so many that I've had 3 ulcers at the same time from the meds. I have been on Remicade for the last 5 yrs as I've been on everything else and this was the last resort. It has worked wonders for my AS but now my immune system is getting use to the remicade and it's not working as good as it use to. My Sacroiliac joints are completely fused together as is the bottom 6 vertebrae, I've lost 2 inches in height because my neck is going forward and my neck is fusing together and I can not turn my head to the right or left and I can not look up or down. My doctor said my chin will eventually touch my chest and be permanently fused there which it is half way there now. My neck muscles are getting stretched because my neck is going forward and I get BADDDDDD headaches from it everyday! :bang: It inflames my heart, lungs, intestines and it causes a psoriasis type skin rash, I only get about 3 hours sleep a night because of pain. The thing is I can not take pain medication, it makes me very ill so I've had to suffer through AS and surgery's with out pain meds. I live in a MMJ state and just got my Card and it has been a blessing. The MMJ has helped tremendously but there is only 2 dispensaries in my area(within 120 miles) and the prices are outrageous and with no competition I don't see the prices coming down anytime soon, it's runs around $160 more an oz than what I can get on the street. Either way it has helped me soooo much with Pain/inflammation, insomnia, headaches.

    No matter what it will not keep me off my SCOOTER! :)
     
    Squiby and Baron23 like this.
  6. Baron23

    Baron23 Well-Known Member

    Messages:
    2,006
    Vioxx maybe? Recalled from the market by FDA order.
     
    Squiby and lazylathe like this.
  7. ShovelHead

    ShovelHead Bikes don't leak oil, they mark their territory!

    Messages:
    75
    I like :leaf: Island Sweet Skunk :leaf: as it helps inflammation and headaches
     
    Squiby likes this.
  8. lazylathe

    lazylathe Almost there...

    Messages:
    2,488
    Location:
    Ontario, Canada
    That's the one...
    Thanks for being my brain!!
     
    Squiby and Baron23 like this.

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