Zohydro Approval

Zohydro Approval

http://edition.cnn.com/2014/02/26/health/zohydro-approval/

Yeah, I’m weeping openly that my fellow Fibro and Chronic Pain sufferers might actually see some RELIEF in the form of a medication that might actually work! Why does everything have to be made into an immediate “they’ll all be drug addicts” debate?! Of everyone I know that sufferers from Chronic Pain and Fibro, I only know ONE that has been given massive amounts of medicine to the point that I have no idea how they are still alive. The rest of us, we’re just taking it one day at a time and we’re not abusing anything. Politicians fighting this are not doing us any favors, they’re just trying to cover their own asses.

What Fibromyalgia Feels Like

What Fibromyalgia Feels Like

pain-00

http://www.fmnetnews.com/fibro-basics/symptoms

A lot of people are living with Fibromyalgia and are undiagnosed or not being treated for it. Men are much less apt to be diagnosed with it because it is considered a “woman’s illness”, but that’s total bullshit because I know more than 6 men that clearly have it.

I have never been formally treated for Fibromyalgia, and I’ve had it for more than 10 years. Initially all my doctors blew my symptoms off. They had an excuse for every single symptom I had, and chose to treat separate things. I’d be treated for the migraines, but not treated for everything else I was experiencing. At the start of it all, I had a crick in the left side of my neck for about 6-8 months that was so painful I wanted to die. An MRI showed an actual injury, I did not have a pinched nerve, so I was handed several different prescription pain medications and a prescription for muscle relaxers and informed that I would “have this for the rest of my life”. When Cymbalta was approved by the FDA and released in 2004, I demanded my doctor put me on it immediately. All of my local pharmacies didn’t even have it, they were literally calling other stores in other states to try to get it for me, but it took them months to get it in stock. My doctor went to a dinner for the drug, something he doesn’t usually do because he doesn’t have the time, and brought me back a ton of samples. For several years, Cymbalta made me feel almost normal again, until it stopped working. I tried Lyrica about five years ago and the first dose or two put me on the floor, I couldn’t even move on that stuff. I have not tried the newer drugs, but I do want to find a way to manage the pain better. I don’t know if there will ever be a cure for Fibromyalgia, but I certainly hope that the next generation gets to see one because life is way too long to suffer like this your entire life.

38275036999330643403321

Photo Credits: Shaun & Dawn

Sorry For The Silence

I know I’ve been pretty silent these last few weeks. For one, I haven’t had a whole lot to say. I’m very in my own head right now. Sometime Thursday night into Friday morning, I did something to my neck and aggravated my neck and shoulders. I thought icing it up and getting some rest would help, I went out of my way Friday and today to avoid excessive stress, but it has progressively gotten worse, so I am strongly considering another ER visit, this time to a different hospital, because I’m afraid that partial paralysis is setting in from the neck up. The hospital I went to previously doesn’t have the necessary equipment (an ER with no MRI machine?! REALLY?! I’ve NEVER heard of that before, not ever.), which is extremely odd to me, but hey, that’s probably why I never have to spend time in their waiting room for more than three minutes! I can turn my body if you’re talking to me, but I can’t turn my neck because of the excruciating pain and the simple fact that it jerks itself back with a giant NO. The pain medicine isn’t working, and I don’t want to risk taking something that could make me sick again, so if this is still the same, off I go. At the very least, maybe they’ll be able to tell me what’s wrong since no one else has had any answers for me in the past three years. Plus, a prescription for muscle relaxers right now would seriously be my saving grace. You know things are bad when muscle relaxers are really the only thing that help you heal. I have an allergy, so I can’t take anti-inflammatory meds, and like I said, my neck is not responding to the pain meds. I don’t want this to get worse, obviously, but I think a stupid part of me is expecting it to heal a little on its own with lower stress and rest. The truth is, I’m tired of going through this shit all alone. It’s hard to psych yourself up for medical help when you have no idea what the end result will be, and how you’ll be able to handle it afterward.

In the meantime, I’m going to apply some arnica and try going to bed. I could do worse.

100 symptoms of Fibromyalgia

For everyone who makes it sound like Fibromyalgia will get better or simply go away. Nice try. Making a photocopy of this for future reference.

The Pain Game

The Pain Game: Trying To Stay Sane & Keep Yourself From Exploding

 

I don’t find anything even remotely amusing about pain. I couldn’t be any more unamused than I am right now. By pain I don’t mean a paper cut or your cat scratching you, I mean mind-numbing, nausea inducing pain. Suffering from a spinal injury, I am constantly being told that my injury is inoperable. That’s fine, because I’d never agree to surgery. I saw what it did to people I loved, and I continue to hear horror stories, which pretty much gives me a number in my head that the success rate for such operations is nowhere near as successful as surgeons profess. None of these “it will fix the problem” surgeries improved their quality of life or range of motion. If anything, it deprived them of a more complete life, but I understand that when you’re in pain and suffering, all you want to do is find a way to alleviate your suffering.

Last weekend (Saturday morning) I reached a very critical point in my own pain levels and decided to take a medication that is being used off label for Chronic Pain. That was my first mistake, because for the first time in a long time, I took the “Very high success rate for Chronic Pain sufferers.” statement and the numbers at face value. I didn’t look too deeply into the medication until it was already in my system, and by then it wasn’t like I could reverse it because it’s a time release drug with an extremely long half-life, one of the longest I’ve ever seen in any drug, be it for pain or not. For the record, I’m usually very on the ball about this sort of thing to avoid problems and potential allergies. The pain was just so bad, and I was irrational in my attempt to rid myself of it and be able to function. Instead, I was pretty much bed ridden for over a day and a half, in between dealing with some pretty vile side effects. Because I’d only heard ½ of the prescription instructions, and no one had ever told me to not drink water before and after taking it, the medication released into my system much too quickly. Less than 30 minutes after taking it, I damn near threw up on my laptop before returning to my bed to pass out for a few hours. After several trips to throw up and return to a passed out/asleep phase, I woke up at one point and realized I was completely pain free. I did not hurt at all from the top of my head to the tips of my toes. My muscles, which had been killing me earlier that day, my spinal injury which had been screaming for months on end, was completely silent. No migraines, no muscle pain, no physical pain, but a complete inability to eat or keep fluids down (big problem, since this medication makes me thirstier than anything else I’ve ever been on. Water does NOT aid nausea though, so I had to switch over to iced tea at some point. Unfortunately I couldn’t keep that down either. Ginger ale wouldn’t stay down, fluids were becoming pretty hopeless.). As it slowly started to trickle out of my system, I was finally able to eat and drink without problem, but I was still really concerned and waited until I thought I’d pass out from hunger before I allowed myself to eat. I did not want to endure any more “fly out of the room” moments to puke up my guts. It’s not something I’d like to relive anytime soon.

By Sunday night though, the pain had become unbelievable. I was fine and completely pain free, and the next thing I know, my lower back was completely shot. It felt as if I’d been doing heavy lifting for weeks without a break, lots of bending, digging ditches, you get the drift. The pain was so bad I could not sit, stand, and could barely walk. There was no relief in sight. My mind was screaming “partial paralysis” at me in a very bad way. I used a topical roll-on product easily found at Walmart called Max-Freeze. In the past, this product has worked for me and worked quickly. I’d apply it, lay down, and by the time I woke up the pain would be gone, or at the very least manageable. The problem this time around is that I couldn’t even feel the product working, because even though I know I applied it directly to the source of the pain, I couldn’t feel it activate on my skin. I panicked a bit and after a while, resorted to ice packs. I probably should have made my ice packs hot, but because of the Max-Freeze I chose not to. Eventually I was able to get in my bed, some of the medicine still coursing through my system, and I was able to fall asleep, but Monday morning I was still in pain, and still experiencing that “What the hell did I do to my lower back?!” moment. My brother asked if I had tried doing anything out of the ordinary while on the new pain medicine and I said “I could barely walk from the bathroom to the bedroom. Do you think I was lifting weights at the gym, or doing something that I already know would aggravate my lower back?! What damage do you think I did in a less than ten foot radius?” I probably sounded insane, especially with the slurred speech and sudden whiny tone to my voice. I tried really hard to hold solid in my belief that my lower back would eventually loosen up and I’d be fine, that maybe I’d twisted wrong or caught an air conditioning chill. With Fibromyalgia, you simply never know.

It is now Friday and I can sit, which is a huge bonus. There’s still some pain, but I’ve got other pain to focus on too. Pain in my head (the migraine that just won’t quit. I’ve had it for two days. It’s trying to break me. I’m determined to break it first,), pain from wisdom teeth (Yes, I still have both of mine. I never saw the need to have them removed. They shift and cause some pain a dozen or so times a year, but outside of that, they do not affect me much. Plus, I am not a big fan of oral surgeons. They creep me out. They simply take way too much joy in pulling teeth and ripping your mouth open. Some people are fine to go and leave with pain medicine, but I’m not one of them. If something has to be done, they’d better bring in the anesthesia because I really don’t feel the need to see, hear, or feel what’s going on.), pain in my spine, and that emotional pain we all know called depression.

In my attempt to rid myself of pain, I ended up wasting a week of my life. That’s extremely upsetting to me. Life is short, pain makes it feel so much shorter, and I want to live. It’s hard to live when you can’t sleep, or you sleep, but you sleep too much. It’s hard to live when your body is geared up for every twinge that hits you and becomes the next great battle. And outside of the pain you experiences physically, you still have a real life. Bills to pay, things that need to be done, fixed, etc. Pain makes you feel like your life is a disaster. When you feel this crappy, faking a smile, pretending you’re fine, and lying to yourself to get through the next hour is just plain unacceptable to me. If I don’t feel good, I say so. Not because I want someone’s attention, a response, sympathy, pity, or anything else, but because it’s the truth and I refuse to feel ashamed because I suffer from more than one form of Chronic Pain. People usually say “I’m sorry you don’t feel good.” or “I’m sorry you’re in so much pain.” and my response is always the same. “Did you cause this pain? If not, don’t apologize for it. It is what it is.” I am a firm believer that I probably take on pain for those not strong enough to handle it, but honestly, I’ve had enough. I’d like to check out of my life for the next ten years, pain free, and do what I want to do. I want to live, I want to get up and go, I don’t want to deal with stress, anxiety, or all the other things that come along with the pain. I don’t want a half-life.

Am I being a kvetch? No, I’m being honest. The “pain game” is not a game I want to play. I wouldn’t wish this on anyone (except maybe Hitler, but honestly, Chronic Pain is too good for him.). I appreciate having a voice and a forum where I can say “I’ve had enough.” and no one judges me for my honesty, but I’d also like to use that voice and that forum to discuss happier, more successful things. I’d like to be able to say that I can get out of bed and feel good each day, or simply that I can get out of bed. I’d like to say “I laughed ‘til it hurt.”, but not because the pain is unbearable. Unfortunately, the pain IS unbearable, I’ve had enough, and I’d like a new alternative that doesn’t kick my ass and torment me. Doctors and scientists are making all kinds of advancements, yet they claim they know too little about the brain to help Chronic Pain sufferers. That’s bullshit to me. If one in every three people that sufferers from some form of Chronic Pain got a grant and became a doctor or a scientist, I guarantee we’d have better medicine and eventually, a cure. I’d like better medicine and a cure in my lifetime, and I’m sure everyone else that suffers would too.

I’m sick of all this crap. It’s time for a change.

Changing The Pain Scale

Changing The Pain Scale

Has anyone else been dealing with an outrageous level of pain over these last few days? I wish I could say it was all due to the rain affecting my area, but my pain actually escalated once the rain was out of the area. Bizarre, right?

I’ve never felt that the doctor/hospital grade pain scale is one that can truly be used on anyone who suffers from any form of Chronic Pain. It’s so ludicrous for me to ever be able to say “I’m at a one.” when in reality, my daily pain levels rarely, if ever, reach a one. Our bodies are over-producing pain, so our scales should read something like this.

#1- “I feel good, lets wait five minutes, the dynamic can change in an instant.”

#2- “I told you the dynamic would change. Weren’t you listening?”

#3- “I’m used to this level, it’s what chronic pain sufferers often call “normal”. The truth us, there’s nothing “normal” about it.

#4- “Shit, where did that new twinge come from?!”

#5- “Great, my day is officially SHOT TO SHIT!!!

#6- “Taking something for the pain. Cannot allow it to escalate over a 6. In fact, I refuse to allow it to escalate over a 6.”

#7- “Motherf!@#$%! The pain has escalated OVER a 6.”

#8- “Trying to remain calm through this pain, so I don’t flip the hell out and do something I will regret.”

#9- Writing down things we might regret.

#10- Getting to 10 is not a goal. It’s something that happens all too frequently. For a “normal” person, they’d be demanding pain meds at their doctor’s office or the ER. They’d be screaming for that medicine like they were giving birth without an epidural, or like someone was cutting them open and burning them at the same time. Somehow, we manage to endure a 10 when it’s really a 50. When we emerge, we’re back between a 3 and a 5, but we know 10/50 is always in sight.

The pain scale for sufferers of any form of Chronic Pain needs to change.

Community Service

“Did you wake up on the wrong side of the bed?” It’s often a bit of an odd phrase/question, especially if you wake up on the same side of the bed most mornings (or for those of us who suffer from any form of depression or chronic pain, whenever the hell we are able to wake up, thanks!), but today I definitely woke up as Vicious McVickerson.

I’ve been having some very real problems with post-concussion syndrome for the last month or so. I’ve had concussions before (I could rival most hockey players, and that’s not me being cute or funny. I had my first documented one before age 3. My second was acquired by age 4. Way too early a start, believe me.), but the side effects have, up until now, rarely started to slowly change my life. Other than migraines and a lot of the Fibromyalgia/Migraine related side effects that a lot of people are familiar with, I’ve pretty much stayed the course with small doses of weirdness thanks to old gymnastics injuries, but this time around, it has affected so much more than I thought it ever would. Seeing stars the next morning should have clued me in, but I was trying to stay calm and positive. I’m an idiot. You’ll never get me to admit that openly again because I refuse to make the same mistake twice.

My memory is really horrible. Post-It Notes and notebooks are my new best friend, but finding and keeping a pen is hard because I am constantly putting them down, throwing them into my purse, my laptop bag, my nightstand, you get the drift. I can lose and systematically re-locate about ten pens in a day, it’s awful. I go into rooms now and have absolutely no idea why I’m there. It might take me an hour to remember why I walked into the laundry room, the kitchen, or even the bathroom. I just stand there and say “What am I doing here? Did I need something?” I’ll walk upstairs and stand at the top of the staircase with a questioning look on my face, and suddenly remember I need to be downstairs.

The nausea, dizziness, balance/coordination issues are insane. I’ve also noticed some changes in my vision, and in the severity of my headaches, so I am going to get my eyes checked ASAP to make sure everything is status quo. The only thing I should need is a new prescription for contacts and glasses, and hopefully that is all that will be found since I won’t be able to make it out to my normal eye doctor who is familiar with my case and who I trust. I hate not going back to her this time around, but I honestly can’t sit for 45 minutes, or longer, just to get there, and then have to do it all over again to come home. I don’t have the patience to sit and focus, and my pain levels, while significantly lower for now that the weather has gotten a bit tamer, are slowly creeping back up. Stress is not a PCS sufferers’ friend, which rings true for PTSD, and chronic pain of every kind.

Today is a blah day for me, even though it’s gorgeous outside, unlike yesterday where the entire day was primarily dark grey, cloudy, and had more than its fair share of torrential and less intense downpour. I think the world will be a better place if I just stay in my room until I calm down from whatever it is that set me off. I’d rather growl at the right people, as opposed to those who don’t deserve it. Call it community service. LOL.

A Story About Pain

A Story About Pain

http://jennytrout.blogspot.com/2013/05/you-sound-like-you-want-to-be-sick-aka.html?zx=8d2023dda000dedb

This blog post blew me away. I cannot say I am shocked at the extent of the medical treatment, especially after what I’ve recently experienced and what I’ve been through in the past. I had to share this though. Hope it helps someone and gains Jen a new reader or two. =)