Well....hell. I was doing SO good. I went to lean over and pick up something I dropped and my bad (of course) foot got causght on my foot stand and I twisted my knee but GOOD. My pain jumped from a 3 to a 7 and I thought I was going to CRY. OF course, being my bad foot, you'd think I'd cut it off, and then I had to rub my right knee with Voltaren Gel, which is an anti-imflametary gel. Of course, since both my knees have CRPS in them, it would have been painful on either, but this is my BAD leg...the leg that took CRPS home from the bar and introduced him to our body and immune system and like a bad date with an STD, CRPS never left and he's traveled through others. Stupid analogy, I know...but hey, I'm ouchie here!
Anyway...rubbing down my knee with Voltaren was like torture, but hopefully I got it quickly enough and this is just a minor set back that will be better by tomorrow. For those of you who don't know, CRPS causes the nerves to see every stimuli as pain. So rubbing gel gently on my knee was like rubbing acid missed with sand and rocks into it. Taking a shower? Think of getting shot with birdshot, soaked in hot sauce. It hurts...it burns...it takes everything spoon I have to get through it. I remember loving a nice, hot shower....ah, memories. And of course, I'd bloused an hour before that...I'm hoping the Voltaren and another bolus in a few minutes will get my pain back down from the 5.5-6 it's currently running.
One of the things I've been trying to do since the surgery while my pain has been lower is go through items and thiungs I've "collected" over the years. DEspite better control of the pain, which is a blessing, I know the physical manifestations of all this doesn't go away. I'll probably never walk again and almost certainly I will never walk unaided. But maybe I can get out of bed and into my chair by myself someday...that's a goal.
Ok...well I've run out of spoons for today, so I'm going to end this blog and watch some television,
Everyone take care of yourselves and I hope the next few days are healthy, happy and comfortable...for my Chronic Pain family, a low pain day and something fun to do.
Wednesday, February 28, 2018
Saturday, February 24, 2018
New Blog...CRPS...Life Interrupted
Ok, I've tried this whole blog thing since 2013....and every time I start with good intentions and a desire to do this...and then I forget, and by the time I remember, it just seems like too much to tackle. Sooooooooo........Life Interrupted.
**************************************************
As many of you know I'm a Chronic Pain Patient. I have a condition called Complex Regional Pain Syndrome, which is also known as Reflex Sympathetic Dystroyphy. I developed this debilitating condition after a work related injury in 1992, and unlike many of my fellow sufferers, I was diagnosed with in six months by the UC Davis Pain CLinic in California; many diagnosis take years. Years of burning, unrelenting pain that never goes away.
What is CRPS? I can give you links to specific places that represent us; https://www.ninds.nih.gov/Disorders/Patient-Caregiver-Education/Fact-Sheets/Complex-Regional-Pain-Syndrome-Fact-Sheet http://www.rsdhope.org/ http://www.rcdom.org/what-is-rsd-crps/rsdcrps-facts/
In general, CRPS is the result of a sympathetic nervous system (the one that controls the bodies flight or fight reactions) misfires and misinterprets every imput as PAIN. There are indications that the Central and peripheral nervous systems may also be malfunctioning. What does it feel like? It burns...put your hand in ice water for a minute, feel that icey burn? Yea...now imagine that which NEVER STOPS. There are temperature changes, color changes, edema, blood vessel abnormalities (and in many cases changes to hair growth in the effected limb...) In most cases, the initial suggestion of CRPS is made when the pain from an injury doesnt get better and seems to hurt more than it should. According to the McGill Pain Index, which is a widely accepted as the most reliable index, CRPS sits at 45 out of 50. That makes it, according to the scientists, more painful than unplanned traumatic amputation, cancer, child birth and most other. It is THE most painful chronic condition that exists, according to McGill; it's the original "suicide disease".
And if that's not enough, IT CAN SPREAD. What started in the joint of my right big toe (yes, Deanna Bowen, I'm the only person who can stub their toe and get a permanent disability) and spread over the years to the entire right leg/hip/back. Then an injury to my LEFT knee cause it to jump over and start spreading. It can spread for NO reason, though mine has spread almost every time based on an injury, however slight or severe. It's now in my left arm as well, and perhaps in my left shoulder. And it can (and has in my case) affected my internal organs.
While CRPS is considered RARE, that just means there are less than 200,000 people diagnosed with the disease, and the diagnosis is very difficult. There is no one, AH HA test for it. Mostly it's a diagnosis by exclusion in which other things are eliminated until you get down to this. It also effects the immune system and there is indication it may be an autoimmume disorder.
NOw, if you're gotten past that book, here is why I wanted to address it. When I was first diagnosed I was told I'd be in a wheelchair with in 6 months. I had a 2 year old child, that wouldnt' work for me. In fact, it was 18 years before I got a wheelchair at all, and then I only used it when I HAD too. It wasn't until after knee surgery in 2009 that I wound up in this chair. The pain would cause my legs to stop responding to my brain and I'll fall, and I honestly just couldn't stand the pain of bearing weight anymore, even on the pain medication I was on. Since then, my muscles have atrophied and the continued pain has meant I'll probably be in this chair for the duration.
NOW, for the GOOD NEWS. I was on Fentynal and Oxycodone and robaxin last year after tying pretty much every non-narcotic and narcotic meds there is. I've been on pain meds for over 20 years to treat the CRPS and other conditions I've devloped. With the current "war on opiods" (aka "lets kill off the disabled and weak and blame it on them when they had NOTHING to do with it") I was tired of being judged, threatened, etc. Don't EVEN need the ER (like, for a heart attack, which I did) because once the ER sees CHRONIC PAIN, they immediately think you're out to scam them out of narcotics; no matter that you already have far stronger drugs at home and never asked for pain control. SO, my Pain Management doctor and I discussed the options of a pain pump. In the past, the pumps hadn't been as reliable and safe as I wanted; now, they are much more reliable and safer. SO, we started the process January 2017. I finally went into surgery for implantation Aug 3 2017.
Once the pump is installed, you have to go in to the doctor to have the medication adjusted until you find the dosage that's right for you. It's a process that can take weeks or even months in some cases. I've had a couple of set backs and a catherter (the tube that carries the medication from teh pump to the intrathecal space) revision, but after my last adjustment, I'm thrilled to say I've finally reached the pain level that I set as my goal. I know that I'll never be pain free, but on a scale of 1-10, my pain is running a 3-4 which is better than it's been n 25+ years. a THREE! OMG, that is like a miracle for me. For me, 10 is unconscious from pain, and 1 is a torn muscle, I'm at a 3. Now, granted, pain is a personal thing. But my goal was to get to a 3 most times while keeping my bolus (an extra dose used for breakthrough with a PTM remote) down to 3-4 a day (I'm allowed 8 a day or 1 every 3 hours)
I know it's not a cure I'm still in pain, and the smallest thing can set my CRPS into a flare that reaches a 8-9 and sometimes a 9.5 and I'll probably never be able to safely walk again. BUT I'm off all the patches and pills...I've even managed to stop taking the ambien for sleep....and I'm sleeping well without it.
So, for those (if any) that managed to get to the end of this novel, THANK YOU FOR YOUR FRIENDSHIP AND SUPPORT. This has really given me my life back....I'm even trying ot clean the house, though I'm still doing without a regular fridge, I have a heater and pain low enough to start development.
**************************************************
As many of you know I'm a Chronic Pain Patient. I have a condition called Complex Regional Pain Syndrome, which is also known as Reflex Sympathetic Dystroyphy. I developed this debilitating condition after a work related injury in 1992, and unlike many of my fellow sufferers, I was diagnosed with in six months by the UC Davis Pain CLinic in California; many diagnosis take years. Years of burning, unrelenting pain that never goes away.
What is CRPS? I can give you links to specific places that represent us; https://www.ninds.nih.gov/Disorders/Patient-Caregiver-Education/Fact-Sheets/Complex-Regional-Pain-Syndrome-Fact-Sheet http://www.rsdhope.org/ http://www.rcdom.org/what-is-rsd-crps/rsdcrps-facts/
In general, CRPS is the result of a sympathetic nervous system (the one that controls the bodies flight or fight reactions) misfires and misinterprets every imput as PAIN. There are indications that the Central and peripheral nervous systems may also be malfunctioning. What does it feel like? It burns...put your hand in ice water for a minute, feel that icey burn? Yea...now imagine that which NEVER STOPS. There are temperature changes, color changes, edema, blood vessel abnormalities (and in many cases changes to hair growth in the effected limb...) In most cases, the initial suggestion of CRPS is made when the pain from an injury doesnt get better and seems to hurt more than it should. According to the McGill Pain Index, which is a widely accepted as the most reliable index, CRPS sits at 45 out of 50. That makes it, according to the scientists, more painful than unplanned traumatic amputation, cancer, child birth and most other. It is THE most painful chronic condition that exists, according to McGill; it's the original "suicide disease".
And if that's not enough, IT CAN SPREAD. What started in the joint of my right big toe (yes, Deanna Bowen, I'm the only person who can stub their toe and get a permanent disability) and spread over the years to the entire right leg/hip/back. Then an injury to my LEFT knee cause it to jump over and start spreading. It can spread for NO reason, though mine has spread almost every time based on an injury, however slight or severe. It's now in my left arm as well, and perhaps in my left shoulder. And it can (and has in my case) affected my internal organs.
While CRPS is considered RARE, that just means there are less than 200,000 people diagnosed with the disease, and the diagnosis is very difficult. There is no one, AH HA test for it. Mostly it's a diagnosis by exclusion in which other things are eliminated until you get down to this. It also effects the immune system and there is indication it may be an autoimmume disorder.
NOw, if you're gotten past that book, here is why I wanted to address it. When I was first diagnosed I was told I'd be in a wheelchair with in 6 months. I had a 2 year old child, that wouldnt' work for me. In fact, it was 18 years before I got a wheelchair at all, and then I only used it when I HAD too. It wasn't until after knee surgery in 2009 that I wound up in this chair. The pain would cause my legs to stop responding to my brain and I'll fall, and I honestly just couldn't stand the pain of bearing weight anymore, even on the pain medication I was on. Since then, my muscles have atrophied and the continued pain has meant I'll probably be in this chair for the duration.
NOW, for the GOOD NEWS. I was on Fentynal and Oxycodone and robaxin last year after tying pretty much every non-narcotic and narcotic meds there is. I've been on pain meds for over 20 years to treat the CRPS and other conditions I've devloped. With the current "war on opiods" (aka "lets kill off the disabled and weak and blame it on them when they had NOTHING to do with it") I was tired of being judged, threatened, etc. Don't EVEN need the ER (like, for a heart attack, which I did) because once the ER sees CHRONIC PAIN, they immediately think you're out to scam them out of narcotics; no matter that you already have far stronger drugs at home and never asked for pain control. SO, my Pain Management doctor and I discussed the options of a pain pump. In the past, the pumps hadn't been as reliable and safe as I wanted; now, they are much more reliable and safer. SO, we started the process January 2017. I finally went into surgery for implantation Aug 3 2017.
Once the pump is installed, you have to go in to the doctor to have the medication adjusted until you find the dosage that's right for you. It's a process that can take weeks or even months in some cases. I've had a couple of set backs and a catherter (the tube that carries the medication from teh pump to the intrathecal space) revision, but after my last adjustment, I'm thrilled to say I've finally reached the pain level that I set as my goal. I know that I'll never be pain free, but on a scale of 1-10, my pain is running a 3-4 which is better than it's been n 25+ years. a THREE! OMG, that is like a miracle for me. For me, 10 is unconscious from pain, and 1 is a torn muscle, I'm at a 3. Now, granted, pain is a personal thing. But my goal was to get to a 3 most times while keeping my bolus (an extra dose used for breakthrough with a PTM remote) down to 3-4 a day (I'm allowed 8 a day or 1 every 3 hours)
I know it's not a cure I'm still in pain, and the smallest thing can set my CRPS into a flare that reaches a 8-9 and sometimes a 9.5 and I'll probably never be able to safely walk again. BUT I'm off all the patches and pills...I've even managed to stop taking the ambien for sleep....and I'm sleeping well without it.
So, for those (if any) that managed to get to the end of this novel, THANK YOU FOR YOUR FRIENDSHIP AND SUPPORT. This has really given me my life back....I'm even trying ot clean the house, though I'm still doing without a regular fridge, I have a heater and pain low enough to start development.
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