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    • #26740
      Alyssa Silva
      Keymaster

      Other than OTC medications, do you have any tips on how to manage pain? Alternative medicine, heating pads, massages, etc… What do you do when you’re having a bad pain day? Some days, nothing works. I get that’s inevitable living with SMA. But even a temporary ounce of relief is better than nothing at all. I’m a heating pad kind of gal but was curious as to what others do.

    • #26764
      Adam
      Participant

      Hot wheat packs. I’m guessing same or similar to your heat pads. On real crook days I’ll have 2 nuclear hot under my back, 1 down my sternum & 1 at the back of my neck/base of my skull. That’s real bad days but where ya can’t even entertain getting outta bed.

      Other days when its bad but manageable its again hot wheat packs. Taking pills makes me feel sick & usually gotta chew them which isn’t fun otherwise its a lottery if I swallow it successfully. So pain killers are an absolute last resort before an ambulance (which is free here).

      Marijuana helps too. Majority of pain I get is muscles tightening & feeling stretched or pulled everywhere. The right blend & couple beers will melt me into my chair & good playlist makes it drift away.

      • #26775
        Alyssa Silva
        Keymaster

        I’ve always been curious about marijuana, but I once got high off of a medication’s side effect and HATED the feeling. My muscles were relaxed but I was also really paranoid if that makes sense.

        • #26787
          Adam
          Participant

          Absolutely that makes sense, mate. Been there myself more than once on various things medically & recreationally. Especially if you dunno what you’re in for the panic is a natural reaction and oh boy its full on.

          I’d say have a dabble if you’re curious & think it could help. A mild blend indica dominant and small dose worst that’ll happen is you giggle a bit and fall asleep. Beat any panic which will start simply because your brain will be experiencing something new and that brings a level of panic by reminding yourself its a plant that grows outta the earth & no one has ever died from too much weed.

          If ya try it, do it with good positive people & vibes; music, chilled, some munchies. I’d avoid edibles to begin, the high can last 8+ hours which sux unless you’re enjoying it. The gummy bear may look more innocent than the alternatives but don’t be fooled.

        • #26791
          Christine
          Participant

          I was diagnosed in 2001 with AlS, today they’re calling it SMA.  All I know is that I started smoking in 2001 and I’m still walking.  I don’t take any other medications.  I smoke regular pot and I also use medicinal marihuana when it’s a painful day.  There are different ratios of THC:CBD.  It all depends on what works for you, but I would suggest looking into it before taking any other kind of pills.  I hope this helps!

    • #26765
      Nikki
      Participant

      Personally I use Tiger balm and Tylenol.

      • #26767
        Adam
        Participant

        How did I forget Tiger Balm? Awesome stuff!

      • #26774
        Alyssa Silva
        Keymaster

        A little embarrassed to admit this but… what is tiger balm?!

        • #26788
          Adam
          Participant

          Deepheat? Dencorub? Not sure what the US equivalent is.

          Ya rub it into sore spots & it’s got a cold hot soothing. Keep away from eyes & genitals. You know the sorta stuff.

          But TB has some Asian (I’m feeling its Malaysian but can’t remember) magic in it. Just the smell is calming.

    • #26773
      Kelly Miller
      Participant

      My pain got to the point of no alternatives to pills was working, and marijuana was only for certain problems, SMA was not one. Unfortunately, I had to go to meds, and I have been comfortable ever since 2019 with no sleepy/sick/out-of-it side effects. I used to think I was a bad person for resorting to meds, especially with our country’s opioid epidemic, but I couldn’t bare the pain.

      Adam, I totally get what you’re saying about the chewing and the swallowing lottery, but getting rid of those has been the best part about a mic-key g-tube!

      • #26776
        Alyssa Silva
        Keymaster

        I’m glad you found meds that work for you and decided to look past the stigmas with pills. You (and everyone else) aren’t a bad person for needing meds! I have a sensitive stomach and try to use OTC meds sparingly. But they definitely help!

      • #26789
        Adam
        Participant

        A few years back I went on a health kick. Nearly choked to death 3 days in on a bloody multi-vitamin!

        The few moments I couldn’t breathe the only thought I had was how ironic it’d be dying taking healthy pills.

        I grabbed a beer & a cigarette & got back in my lane lol.

    • #26777
      Chantell Venter
      Participant

      I find that swimming and exercise in a heated pool in summer months help a lot for the tightness and pain in my muscles. I go to physio once a week and it helps me. In winter when I can’t swim my physio uses laser, ultrasound, pressing on the pressure points, dry needling and kinetic strapping to ease my pain. I’ve been going to him for 5 years and he really helps to manage my condition. If I really can’t handle it anymore I find that anti-inflammatory medicine also helps along with pain meds and yes, my good old wheat bags during the day and my electric under blanket at night. I find that wearing too thick clothes and heavy blankets makes it worse as my muscles then have to work so much harder to do anything. After sitting in my motorized wheelchair for 41 years I have recently also been diagnosed with quite severe osteoporosis because of not being able to put weight on my bones. I also have contractures in my hips and knees and that also adds to the pain. Mostly have pain in my neck, shoulders, back and hips.

    • #26792
      Mark Pratt
      Participant

      Vicodin.  If one doesn’t help, take two.

    • #26810
      Crystal
      Participant

      What pain medicine do you guys take? I forget the one my doctor has me on right now but I can only take a low dose (1/2 a milliliter) cuz if we go higher, I can’t hold my head up and I have accidents in the bed a lot. But this low dose isn’t helping, even though I take it twice a day every day.

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