Get ready this is a long post.
So, as many of you may or may not know I have been having a horrendous time with the peripheral neuropathy (nerve damage) in my feet and we have had even more trouble finding the right way to manage the pain. We have tried all of the usual neuropathic medications but to no avail. I will say that in most cases the medications tended to give some relief albeit only temporary. We ended up with the last alternative which is analgesia. Now the type of analgesia I'm talking about tends to be a bit stronger than Panadol (Tylenol to those of you in the in the US). The analgesia I'm talking about are opiate based pain relief. You know the ones I'm talking about, the big guns or party favours if you like for those of you living in slightly more metropolitan areas such as LA, Sydney, London, New York, Dallas, Paris, you get the idea. Not that I'm suggesting that any of my loyal readers (all 6 of you) would every think of taking said drugs as anything more then appropriate pain management. I'm sure that most people would never every see these drugs as anything more than pain management much less a form of entertainment. Would they? Anyway, we did keep one of the neuropathic medications to take along with the pain relief as we felt we would get better coverage over the pain.
In the end the pain still won. I was having what is called breakthrough pain which is what it sounds like the pain actually breaks through the pain relief ceiling being provided by the drugs. On average these breakthroughs happened three times a day and some times more. The pain lasted around thirty minutes but it could last for an hour or more and during those periods of breakthrough pain I would score the pain level a 5-8 out of 10. When I wasn't in one of those periods I would still have an occasional zing of lighting run through my foot or my feet would suddenly feel like they were on fire but if those things didn't last long I just ground my teeth and rode them out. Also because the nerves are messed up I don't feel the ground so well meaning that even thought I get this pain my feet at the same time my feet are are numb. Go figure???That's why they call it nerve damage.
Now that we are all up to speed, and I apologies for boring to those of you who know that part of the story, let's talk about what happened when I went up to Sydney for my MRI. So the pain was totally out of control and by the time we went to Sydney to have the MRI done and to get a review by the specialist neurologist, I was taking 60mg of Oxycontin SR twice a day. Oxycontin SR is the extended release formula of oxycodone so you get relief over 12 hours opposed to a sudden rush of pain relief like you get from oxycodone which is taken like every 4 hours. The problem as I said earlier is the pain was breaking through between doses. Anyway, we arrived in Sydney on Monday night and the test was scheduled for the next morning. We went up to the hospital at 11:00am and handed in the appropriate paper work, which I had filled in prior, to the out patient desk and sat down. I was having a few claustrophobia issues ever since my little trip to the ER a few weeks back when I couldn't breathe and as many of you might know an MRI machine can give people a kind of oh say casket like feeling, yeah that's it, like being in a box that you can't get out of and definitely not the place for a claustrophobic. They even ask you on the pre-test form rather or not you have issues with claustrophobia. As a pre-caution I took 20mg of Valium to calm my nerves. I told the women who was giving the test what I had taken and she said she thought it was a bit excessive but what ever it takes, honey. In the box I went and half way trough the woman who had been occasionally talking to me through a speakerphone within the machine finally said she was going to quite asking me if I was alright because I was snoring to much. Hmm??? guess the Valium worked.
Test all done and it was off to the neurologist for his review of the whole situation. I've been seeing this doctor for a few years now for this problem and he is the best that I know of and I trust him. He did his usual exam and looked at the results of the MRI, which were inconclusive naturally and of no help what so ever other than to tell me that I have a bit of arthritis in my lower back. Hell, I could have told him that. I'm then one who groans every morning getting out of bed and it ain't because I don't want to get up. So then he says " When do you fly back to Hobart?" We said "Day after tomorrow" which his reply was "Ow (big pause), because I think it would be best if I admit you into hospital so we can deal with this properly." James and I looked at each other and just turned around an said "If you think it's best we'll do what we need and we'll go from there." And, that is how I ended up spending the next ten days in hospital.
Now, I think that's enough reading for your poor bleary eyes at the moment, not to speak of my poor fingers. I will tell you all about what happened in the hospital tomorrow. It's a long post too, but just all sorts of fun. I guarantee. I hope some of you weren't expecting to hear about the whole thing because I am having a hard enough time typing this as it is, I mean you think 60mg of Oxycontin twice a day is bad Hmm??? you ain't seen nothin' yet. You'll understand tomorrow. Until then Enjoy...
5 comments:
Thanks for the update. These kinds of posts are always hard to do...details,length, etc. I've got a friend with the same condition and will forward your post over to him to take a read through. As for the MRI? not a chance with me. You'll recall my "get me out of here" moment a few months back when I tried to have one. Ick! I wish you health, today and always.
I'll be hanging on the edge of my seat until I hear the rest.
But you take all the time you need to tell us what happened, sweet pea :)
And in the mean time, take care.
Interesting to read your story so far. I have PN, diagnosed just 4+ months. I now find what works for me: Lyrica (Pregabalin) & Cymbalta (Duloxetine) both started low amounts and worked up VERY slowly. I also take vitamins, and Alpha Lapoic Acid, L-Carnadine, etc and find useful the Bowen Technique that originated there in Australia. I'm from the US, Rose Terry RMTerry@prodigy.net
nasty peripheral neuropathy
consider using accupuncture when you get back home.
have you tried Lyrica? cymbalta?
old Rx like tricyclic antidepressants in small doses?
good luck!
You sound awfully chipper for what sounds like a horrific experience. Or maybe that's the pain pills coming through in your writing, lol. Can't wait to hear the rest.
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