Fatigue - It's Not Just Feeling Tired

So, tonight I gave our two puppies a bath.  They're actually pretty good about this, although no one would ever say they were fans of the process.  I figured I was safe to do this because I haven't really done anything else today.  It's been a perfectly lazy Sunday, spent stretched out in my recliner catching up on recorded tv with my hubby.  The process took maybe 30 minutes or so to round them up, shampoo, rinse, condition, rinse, and dry them.  Since my way of doing this is to strip and bring them one at a time into the shower with me, I follow up the process with my own (quick) shower. Doesn't sound too arduous, does it?

But that's it.  I'm done.  Finished.  No energy left and pain levels, especially in my back, are spiking.  So I figured it was a good time to talk about the fatigue that is a major player in the fibromyalgia.  Because many people don't really get what fatigue is.  They think it's just feeling tired.  In actuality, it's much more than that.  It can hold you and your body hostage, making it impossible to move, let alone accomplish anything as ambitious as taking a shower yourself, let alone giving the dogs baths.

The thing is, no amount of sleep, if you're able to get it, fixes fatigue.  Fatigue is when you wake up in the morning feeling as exhausted as you did before you went to bed the night before.  It's taking a 5 hour nap in the afternoon and then being ready to go to bed two hours later.  It's considering how badly you really need to go to the bathroom and if you can postpone it because just the idea of walking from your bed or chair to the bathroom is almost inconceivable.

You know the exhaustion you feel when you have a bad case of the flu? It's kind of like that only moreso. It can appear at any time and last for an undetermined amount of time. It can creep up on you so that one minute you are working away at your desk and the next you find that you can't stay awake.  It can make driving a real challenge.  You may feel fine when you get in the car but then suddenly you find that you're having trouble focusing on the road and your eyes just do not want to stay open.

Fatigue is knowing that your pain levels might actually decrease if you could get up and go for a walk but you can't work up the energy to sit up, let alone make your legs actually move.  Putting on clothes and shoes and getting out of the house? Some days this is an insurmountable task.  None of us like it. We have things we want to do.  We know that the vast majority of people don't understand and don't get it.  They see us as lazy or not pulling our weight helping out with things. Believe me, we would if we could.   Please try not to hold it against us.  Know that if we are able, we'll be there and pitch in to the best of our abilities.  Nobody regrets it more when we can't than we do.

Pain and the Management Thereof, or The Great Medical Marijuana Experiment

Pain has been much on my mind for the past few months.  Living with it, dealing with it, trying to find a way to manage it.  I have discovered that it's not only a matter of trial and error but also, apparently, dependant on the whims of the universe. With any condition that involves chronic pain of any sort, there are highs and lows.  Sometimes it seems like the idea of pain and how to cope with this pain at this particular point in time is always in your thoughts and on your mind.  You get to the point, at times, where you feel you would almost be willing to try anything if only it would bring a brief respite from hurting.

Some of you may remember that several weeks ago I was bemoaning my law abiding ways, having no idea how to go about getting marijuana to try and having even less of an idea of what to do with it if I did happen to obtain some.  I have now managed to find some of those answers and am happy to share the results of the Great Medical Marijuana Experiment here.

After a couple of months of high pain levels, it was my disappointing results at the Beyond Limits Ultra race that pushed into moving forward with that experiment.  Since I had already been doing some research on the issue, I'm happy to report that the whole process of getting my medical marijuana card and then obtaining supplies turned out to be quite quick and easy.  It took me about an hour and $60 to get the card.  This process involved filling out a questionnaire at the nearby medical marijuana clinic that I went to.  I then met with the doctor via Skype, in a private office.  She asked me a number of questions (mostly verifying what I had filled out on the form) and had the person in the office come in to take my blood pressure.  The whole consult with the doctor was no more than 10 minutes or so and she approved me for a card for 1 year.

So now I was able, legally, to obtain marijuana in the state of California.  I had noticed a number of cards and flyers on the reception desk when I checked in so I picked up some of those while the nurse was processing my paperwork. When we were finished, I asked him if he had any recommendations for local dispensaries.  He told me that a new one had just opened a few doors up from them and gave me their card.  I walked the half a block or so and found the place, which was located in a trailer between two storefronts. I went inside, where there was a guard who asked for my ID and paperwork.  Once he'd verified everything, I was allowed to enter the store portion.

I informed the young lady working that I had absolutely no idea of what I was doing but that the doctor had recommended that I start with small amounts of edibles since I had no experience with marijuana.  This recommendation coincided with what I had read about edibles providing the best pain relief.  She recommended their brownies, which I thought were most reasonably priced at $5 each or 5 for $20.  I selected 5 different brownies (mostly different just in what they were topped with, such as M&Ms, chocolate chips, etc.), received her recommendation to start with 1/4 of a brownie, paid (this seems to be primarily a cash only business), she stapled my purchases into a prescription bag, and I was on my way.

Once I was home, I cut one of the brownies into quarters and ate a piece. It pretty much tasted like a brownie. From my reading, I knew that it takes longer for you to feel the effects from an edible than if you smoke, due to the digestive process.  Within an hour to an hour and a half, I was definitely feelng no pain.  Of course, that was mostly because I couldn't feel my body any more.  I completely forgot how to move.  Seriously, when I was ready to go upstairs to bed, my teenage son had to help me get the foot of my recliner down and help me to my feet.  Although I had my doubts, I did manage to make it upstairs and collapse into bed, where I pretty much immediately passed out.

I decided that a quarter of a brownie was too much as it completely rendered me non-functional so I spent some time trying to figure out the correct dose.  As I said, this was a matter of trial and error. I eventually settled on 1/5 being the proper "dose".  I've been through 4 of those 5 brownies at this point and here are my thoughts.

I can't say that I enjoy the way that it makes me feel not in control of my body. Yes, it does lessen the pain but not any better than my pain pills do. It also has the drawback of pretty much making me unable to function in a normal manner or do anything other than sleep. There is absoutely no way that I could take a dose and be able to do my job. I tried smoking some (the nice girl at the dispensary through in a joint for me), twice, and thought I was going to die. I really hated the burning and taste in the back of my smoke and don't think I was able to smoke enough for it to have any effect.  I have heard that some people vaporize it but I'm not sure what is involved in that process. I'm pretty sure I don't have the necessary equipment to do so at the moment.

So I have decided that I will primarily be sticking with my pain pills for now, except maybe sometimes to sleep. I had an appointment with my rheumatologist a couple of weeks ago where I told him that my pain levels were out of hand. He ended up increasing my Cymbalta, adding an extra 30 mg in the morning to the 60 mg I take at night. I'm pleased to report that so far, this seems to be helping considerable. I have mostly been able to make it through each day with no pain medication except at night, to be able to sleep. I have found that if I don't take something before I go to sleep, I am usually awake from pain of one kind or another by about 2 am. I have no idea why. I would think I'd be less likely to start hurting when I'm not doing anything but sleeping but this appears not to be the case. Maybe you're just more aware of your body when you aren't focused on other things, like you are during the day.

I know many chronic pain sufferers who swear by the difference that marijuana makes in their life and I am very happy for them. Sadly, for me, it just doesn't make enough difference to deal with the things I don't like. I do, however, feel that it should be legalized and regulated nationally, so that everyone who could potentially benefit from its use has the opportunity to decide for themselves if it works.