For the last 3 years I have been seeing a pharmacist/consultant and my Doctor on a monthly basis to try to come up with the right ‘cocktail’ or combination of medications to help me manage my pain.
It has been one of the hardest ‘tests’ of patience, and one of the most deflating experiences of my life. Don’t get me wrong, I am not looking for the ‘magic’ pill to cure everything that ails me. I gave up on that a long long time ago. I know that I most likely will have to deal with all of these issues for the rest of my life, and for the most part I have fully come to terms with that. I mean, what choice do we have, right? Sometimes it is easier to let sleeping dogs lie, and not constantly poke them with a stick and expect them to remain peaceful…..
I do not remember a life before this one, nor do I remember what it is like to live without medication, but this journey has been really hard for me, and most days I feel like throwing my hands up in the air as a sign of defeat. Sorry. I am being honest here…. Let me explain…..
The first 20 drugs I was on, I went into the experience with a great deal of hope (and yes, I did say TWENTY drugs…. I have been on many many more than this even….). Every time I was given a new drug to take, I felt ‘encouraged’ for lack of a better word… I felt hope that maybe THIS one was the right one for me… maybe THIS time I was going to feel better… maybe THIS combination was finally the right one…
But they never were,
and all of those drugs came with side-effects,
and when they didn’t work I would have to try to wrap my head around quitting them,
and not feeling like I had somehow failed..
Only to go through moderate to severe withdrawal/discontinuation syndrome…
Rid EVERY sign that my body ever relied on that particular drug….
just to do it all over again. Whew!
Now maybe to some it doesn’t seem like that big of a deal… You go off of one, and go onto another, and all the while, keep your chin up, keep the house clean, keep the family happy, and sing la la la, all the home!!
Right?
WRONG!!!!
Maybe the first 20 times I tried, I succeeded in keeping it all in perspective, and had a smile on my face. The days the smile wasn’t there, my Doctor just thought I was depressed and suggested yet another medication anyhow… So at best I kept a fake smile on my face to avoid ANOTHER PILL.
But after my Topamax NIGHTMARE (for those who don’t know, I wrote a previous post about my experience on this drug), I… well…. to be frank, I gave up trying, I hit a wall, I got really angry, and then I just became jaded about the whole thing entirely….. I also ran out of options….
I have been on every FDA approved drug there is in Canada for Neuropathy…. and none have helped…..
I have been on every pain killer that my Doctor will allow me to take (note: I could still try a few that are FDA approved, but my Doctor won’t allow it).
I have tried numerous drugs and combinations of off label drugs, but they never really helped, and most just made me sick…..
And as my health declined, and I ended up with even more symptoms and problems, the drugs that were somewhat effective started being less effective, and then even MORE drugs were added to the mix…
STOP THE INSANITY!!!!!!!
One of the last drugs I tried was Cymbalta, and after having yet another horrid reaction, and an even more horrid withdrawal, I said ‘ENOUGH!!!!’ I am NOT playing this game ANYMORE!!!
Yes, I have been depressed at times, WHO WOULDN’T?? But it isn’t the kind of depression that medication will fix anyhow… I am one of those weird few who cannot take antidepressants don’t, they make me MORE depressed! This type of depression is a result of medical treatment, not the lack thereof.
I JUST NEEDED A BREAK from the insanity that IS this Chronic Life!!!
So where am I now?
I am ‘maintaining’ the drug regimen that I essentially started out with! LOL! Really?! All of that to end up where I was?? I guess I need to laugh, because if I didn’t, I’d surely be crying!
I have run out of options in medication, so I am looking YET again for options outside the conventional medical world to help treat my pain, and I am taking a stand….
What I put inside my body is MY DECISION, MY CHOICE, MY RIGHT… As it is yours…
I have jumped through every hoop, dodged every bullet, and hurdled every obstacle that has been put in my way by Doctors, Specialists, Practitioners, Therapists etc… But now it is MY TURN to lead, and my right to be in control….
No more ‘cocktails’ for me right now, and no more new drugs… I know what is right for ME at the moment, and that isn’t it. What may be right for me tomorrow might not be right for me today, but it is time for me to feel in control of my body once again, and lead this journey to recovery, and not be led anymore…..
It hasn’t been an easy road, for me, or for my family and loved ones… it isn’t easy to watch, I am sure you all can relate!! In the process it is soooooo easy to lose SELF, lose HOPE, lose connections with others, lose IDENTITY…..
But one thing I know for SURE is, WE CANNOT DO THIS ALONE, WE CANNOT BELIEVE THAT WE HAVE FAILED, WE CANNOT STAND IN JUDGMENT OF OURSELVES, and WE CANNOT LOSE HOPE!!!!
So yes, I fall just like everyone else does…. and I am not positive all of the time…. but even when I feel like I’ve given up, I have to realize, I really haven’t…. I just need to find the right path…..
Just for today, change your perspective…. what might seem like INSANITY might just lead you back to a place you’ve been longing for….
Sometimes PEACE is better medicine than anything you have been prescribed…..
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I’m relatively new to your blog. My situation is different, of course — we are all unique — but I can totally relate. Most recently I’ve been meditating (with breath focus), and following a mindfulness practice via the book “Full Catastrophe Living” by Jon Kabat-Zinn. I find reading (self-help books) is both distracting and uplifting. For meds for my depression/anxiety (which are quite recent developments after many years of pain) I’ve chosen to go natural. St John’s Wort is widely prescribed in Europe. The one I use also contains Valerian and passionflower. All the best to you.
I had a horrible reaction to Cymbalta, too. I was doing well on this latest trial (gabapentin) but the pain is resurfacing again in the last few days. I also understand that swing from detoxing one med to getting accustomed to the new med. it is easy to lose yourself in the process. I don’t have answers either- I will let you know if I find them
. Wishing you well 
Lenka
BIG HUGS to you Joleen! As of now, I could’ve written this post myself, nearly word-for-word….not that I know exactly how you feel, but I do feel your pain. As you know I’ve gone through the medication circus many times myself and have recently gotten to that “why bother” stage – yet again, so it’s a great comfort to know I’m not alone, (though of course I wish you felt better!).
Now, on top of the “normal” pain and frustration I’m experiencing new problems, problems that I’m afraid may be much more serious than I’ve ever had to deal with before. Yes, the fibromyalgia pain, and the depression that accompanies it, is plenty enough, and I never thought I’d feel as bad as I do when going through a flare, but, well, I do. I have no idea what’s wrong, (of course I’m having test after test done again), but I literally feel like I’m rotting away. I even look like I’m rotting away – one of my new symptoms is giant infected knots all over my body that bleed at the slightest touch, even on my face so that I’m embarrassed to go out. Yes, it is as nasty as it sounds, and I’m sorry if I’ve grossed anyone out. This is the first time I’ve felt comfortable in talking about it, and I greatly appreciate you listening, (even though you probably didn’t expect to be listening and surely didn’t post this in order to make me talk).
I wish you many PAIN-FREE moments, and much luck as you work to discover what works next! And many hugs!
Deanna my beautiful friend! I have MISSED YOU!!!!!
She couldn’t get any help, and nobody really could tell her WHAT was going on! She had to take a leave of absence from work because it got so bad, she didn’t want anyone seeing her like this. I SWEAR it sounds exactly the same! So you aren’t alone girl!
I am SO SO sorry that you are going through so much! DO YOU KNOW WHAT?!?!? I have a friend who went through EXACTLY the same thing! The pictures she has shown me documenting her “journey” are UNREAL. |It started as a weird lesion on her ankle, and spread everywhere…. She was unrecognizable at one point, and it was all over her face…
She ended up seeing the best naturopathic doctor we have here… He is known all over North America and other parts of the world. He was the only one who could explain what was happening, and he healed her! She has to be careful so it doesn’t come back. It has come back a few times, but not as bad, and it has healed faster…. Do you want me to get more info from her?
I wish I could take it away from you sweetie… I would take it on in a heartbeat if it meant that you didn’t have to deal with it… it sounds miserable…
I honestly think that my friend might be able to help!!!
XOXOXOXOXOXOXO
Oh Joleen, I can’t tell you what it means to me to hear I’m not the only one who’s suffered with this miserable condition, nor how much your kind words mean to me. Thank you so much!
Yes, if you could get more information for me I would GREATLY appreciate it. Thank you again and God Bless!
Good for you Jo. Hands clapping here. Hope you can find a non pharmaceutical way that helps as well if you chose to pursue that route. Nice to see you back. PS Please change my blog address of FibroDAZE to bignoises.wordpress.com
SORRY SWEETIE! I will change your blog addy ASAP!
XOXOXOXOXO