My experiences with specific pain/spasticity treatments

Here are some of the ways I've attempted to combat MS pain and spasticity. I will probably update this post quite a few times before it's finished. 

NO TREATMENT

- total misery

- unsafe for me to be on my feet at all, due to spasticity in my legs

- glued to the couch since it's unsafe for me to do anything else

- I get weaker

- keeps me in constant danger

- doesn't address my unending pain (from MS, horribly broken leg, burned leg/ass, etc.) at all

Did this help me? Not helpful at all.

LONG, HOT BATHS
+ seems to help a little, temporarily
- dehydrates me (I lose 2-3 lbs of water every time I bathe.)
- I already have a very hard time staying hydrated
- makes me very weak for maybe an hour

Did this help me? A little bit, I think. But this is something I do every day anyway. It's not something I can do every time pain and spasticity become unbearable.

CANNABIS

+ allows me to escape the misery *a little*

+ no horrible side effects

- doesn't do much to help

- unsafe for me to be on my feet at all, due to weakness/spasticity in my legs

- can't avoid being high, which creates danger I'd rather not face

- doesn't address my unending pain (from MS, horribly broken leg, burned leg/ass, etc.) at all

- almost as much misery as when I do nothing

Did this help me? Not very helpful. 

BACLOFEN

+ diminishes spasticity

- no muscle control

- can't really use any muscles

- unsafe for me to be on my feet at all, due to weakness in my legs

- glued to the couch since it's unsafe for me to do anything else

- pissy pants in public

- pissy pants again in driveway an hour later

- I had no warning, no chance

- had to pee in my driveway once I was able to drop my newly pissy pants (on the very public driveway)

- extreme dehydration

- stupid/high for 10 days after taking one pill

- puts me in constant danger

- doesn't address my unending pain (from MS, horribly broken leg, burned leg, etc.) at all

- about 500% as much misery as when I do nothing

Did this help me? I will never take Baclofen again. It's fucking poison.

DAILY STRETCHING

+ *some* relief if I stretch pretty much constantly

- unsafe for me to be on my feet at all, due to spasticity in my legs

- I inevitably get injured, which keeps me from either stretching or exercising

- doesn't address my unending pain (from MS, horribly broken leg, burned leg, etc.) at all

- about 75% as much misery as when I do nothing

Did this help me? Very helpful when I am able to get off the couch; when I am not injured. 

15 MG OF OXYCODONE (Twice daily.) (For some perspective, I was given 30 mg every two hours in the hospital.)

+ life-changing/life-saving pain relief

+ total spasticity relief. No spasticity. Spasticity, which is infinitely more painful than carrying a very heavy backpack 3,467 miles across the entire United States in 211 days, is absolutely nullified. Get it?

+ no high

+ no side effects

+ no withdrawal after taking a small amount of oxycodone every day for five months

+ enables use of muscles (exercise and stretching)

+ gives me control of my body

+ prevents injury

+ motivates me to exercise for hours every day

+ makes me stronger, even without exercise

+ improves body mechanics significantly

+ body moves infinitely more efficiently

+ allows me to use my toilet safely

+ allows me to use public toilets safely

+ allows me to pee standing up, into a toilet, which I couldn't do for a year or two before I broke my leg

+ allows me to be on my feet safely

+ allows me to get stronger via exercise (videos prove this)

+ allows me to walk, which I couldn't do before I broke my leg (videos prove this)

+ considerably better balance

+ allows me to prepare food

+ allows me to leave my home

+ makes muscle pain from exercise bearable

+ gives me considerably more endurance (3x?)

+ sharpens my mind/focus

+ diminishes stress significantly

+ allows my body to relax and feel like a person, which I can't do ANY other way

+ without oxycodone, my legs feel like they weigh 200 pounds each. With oxycodone, they feel a lot more like legs, and I can lift them.

+ may aid circulation

+ keeps me from feeling cold all the time

+ gives me a chance (to continue living)

+ about 25-50% as much misery as when I do nothing

+ I could go on and on

+ notice this list has none of these (-), while every other list has either one or none of these (+)

Did this help me? This would save my life and allow me to improve, if only I could get someone to prescribe it for me. In fact, it already has. And I have lots of proof, beginning with videos on YouTube.

I'm going to fucking die because no one will prescribe me the one medicine that actually helps me, and helps me help myself. Soon. And until that happens, I get to freak out constantly.

Example of how oxycodone keeps me alive

[This was originally a Facebook post, but I kept adding to it. Consequently, I decided this would be an appropriate place for it.]

Imagine every time you go to the bathroom that you have to figure out how to transfer yourself from a chair to the toilet, atop legs you can't control; legs that have become so weak, you almost can't be on them at all. First you have to grab the handicap rail with one hand and the (tall) tub with the other hand. You may be on your feet, but your legs still move however they want and you can't stop them; essentially as if you are having a seizure. If your knee wants to extend all of a sudden, you get to kick the wall or the toilet as hard as possible, which might throw you off your feet and into real danger. But if you're still on your feet, one leg wants to bend while the other leg wants to hyperextend. You can't stop your legs from doing what they want to do. You just have to hope they don't want to move in a way that will get you injured or killed.

Now that you're standing, with your hands holding onto safety devices, try to figure out how you're going to pull down your pants. Option 1: Pull down your pants without hands. Option 2: Pull them down by removing your hands from your safety devices, thus putting yourself in position to fall and get hurt very badly, if not killed. You might be pissing in them already, because you have very little feeling or control in your bladder, which means you get almost no warning every time you have to go to the bathroom.

Phew! You got the pants down without also getting killed or knocked unconscious. Fuck, now there's underwear! (I can't wear underwear anymore because of this. In fact, I haven't worn underwear since about the day after I broke my leg.)

Somehow you manage to get your bare ass on the toilet safely, so you do your business. Now it's time to pull up the pants and get back on the power chair. All that shit you just did, you now have to do again, in reverse. Oh yeah, you can't put any weight on your right leg because you have an injury to your right knee that you desperately need to heal ASAP.

This time you're able to get seated before fully pulling up your pants. Now you have to figure out how to pull up your pants from a seated position. Seems easy if you can move like a normal person, but it's not easy if you can't move. Consequently, more danger.

WITH ESSENTIALLY THE SMALLEST DOSE OF OXYCODONE POSSIBLE, NONE OF THAT IS AN ISSUE. Not once a day; not 20 times a day. That is, with a very small dose of oxycodone (10-15 mg), it is safe for me to piss. Without oxycodone, pissing could very easily get me killed. Without oxycodone, essentially every move I make could get me killed.

But because a tiny percentage of people, all of whom are not me, want to get high on oxycodone, no one will prescribe me the one drug I know from experience can save my life, as well as allow me to get stronger. They have convinced themselves they are protecting me, but they are only keeping me from protecting myself. Consequently, I get to risk my life EVERY TIME I have to use the bathroom. That's my only option, and it's probably going to get me killed. I'm surprised it hasn't already.

About a month ago, I had begun standing to pee, which I hadn't been able to do since a long time before I broke my leg (last year?). I was only able to do that because oxycodone had allowed me to use my body enough to make myself stronger. Today I've decided I need to start using urinal bottles again, to eliminate the danger I've described above. Since I can't safely transport partially filled bottles to the bathroom, I have to dump them in cat litter containers, which I keep beside the living room couch and my bed. Then I have to hope someone (Mom) will come here and dump them in the toilet for me.

I don't want to die, but I'm going to die very soon if I don't get a comfortable supply of oxycodone. I may even have to resort to suicide, because I am absolutely miserable. (It's not withdrawal. I have never had any kind of withdrawal.***) For no reason other than because every doctor I have seen about this has chosen not to help me. If I can only get the help I need, I have lots of life ahead of me. If I can only get the help I need, I may also be able to make the remainder of my life mean something. If you've watched my videos, then you saw how much I improved (and smiled) while I was on a small daily dosage of oxycodone. .

I will try to make a video demonstrating what I've said in this post. If I make one, I will add it to this post.

***I'm pretty sure the main reason why I have never experienced opioid withdrawal, even though I took oxycodone every day for five months, is because I have never taken opioids specifically to get high. Rather, I have always taken as little as possible. I have probably been "high" on opioids at times, but if so, that was only because I took what they gave me in the hospital.  Believe it or not, I determined on my own that it is not good for me to be high. Being high creates significant danger for me. That alone is enough to keep me from abusing drugs.

Watch how opioids made me better (contains videos)

[Please share this post with anyone you may know who, like me, is slowly being killed by spasticity and/or the side effects of muscle relaxers. For anyone in that position who is responsible enough not to use prescription medicine to get high, a tiny dose of oxycodone twice a day is probably the answer they've sought for longer than they can remember.]

I know no one reads this blog, but I actually have some very useful information to offer. I have made some videos this year, which weren't intended to document my recovery from two nasty injuries but have ended up doing that. And then some.

One thing I now know is that my recovery from my two horrible injuries was aided immensely by oxycodone. But oxycodone didn't just help with my injuries; it also helped with my MS. And as soon as I stopped being able to take oxycodone every day (because I stopped receiving scripts for it, even though my injuries still hurt like hell, months later, and probably always will), I started falling apart again. A few weeks ago I could walk, unaided (as shown in the fourth video below). It wasn't pretty, but I could do it, and I was only getting stronger/better. However, now that I have been off oxycodone for a while, I can't. In fact, I am injured as a direct result of being off oxycodone.

Here's the first video I made, before I really knew much of what I know now: https://m.youtube.com/watch?v=TIenEnpbrVE.

This video is about making pizza, but it shows my progress more than any other video. I think the good stuff is fairly early in the video: https://m.youtube.com/watch?v=2qKbYiI9TCo.

This one is short, and it shows my first attempt to stand without aid: https://m.youtube.com/watch?v=xVKPKHYuFvU.

And while I was already mostly off oxycodone when I made this video, it pretty well shows how much I had improved specifically because I had been on oxycodone for months before this. In this video I am probably more mobile than I was before my first nasty injury (4/27/16): https://m.youtube.com/watch?v=03mQv57R5WQ.

There is no video showing how useless I have become the last few weeks because I think you can probably figure out how that looks.

Shortly after making the last video, I determined that a pain in my knee may be serious, which means I pretty much have not been on my feet since then. Consequently, I can't do any of that stuff now. All the work that got me that far was basically for nothing. All because I can't get anyone to prescribe me more oxycodone. As a result, I can't do anything for myself. I can't prepare the food that was doing so much good for my brain. I can't exercise. I can't stretch. Because even though the injury in my knee is probably not very serious, I have to stop everything whenever I suffer any kind of injury. If I don't, I'll suffer more injuries.

I may have more to say about this, even though I know no one listens. It's too bad, because if only a few handfuls of people were willing to read what I have to say here, thousands and thousands of people with MS could experience the life-changing things I experienced while I was on oxycodone.

I know Baclofen does help with spasticity, but I also know Baclofen creates about 10 side effects that are not worth the relief I may get from Baclofen. Also, Baclofen relaxes my muscles so much that it's not safe for me to be on my feet when I'm on Baclofen. Which makes it 100% useless, because I need to be on my feet so I can exercise, which would allow me to live on my feet. With the tiny amount of oxycodone I would be taking every day if I could only get it (20-30 mg), I experience zero side effects. It doesn't get me high, either. At all. No withdrawal, either. And the relief I get from oxycodone is much more than just relief from spasticity. (I may have more to say about that in a future post.)