Was it Mark Twain Who Said...

I feel the need for some sort of reality, sanity, brain on overload, stress check. Due to an issue with my PM Dr’s office I have been Neurontin free since Friday. For the first time in nearly a year and a half I can feel a bit of the brain fog start to lift. Not all of it is gone mind you, but enough to knock me off my sedated butt and notice a difference. This Neurontin free body is possibly about to revert back to its hazy comfort zone tomorrow. Before it does, I’d like to record a few things and possibly get feedback, thoughts and opinions from others. Perhaps I do not need feedback, but instead to just work through this moment…

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My brief RSD/CRPS overview…
June 2008 I stubbed my right foot/little toe causing abnormal pain. I was diagnosed in October 2008 with the beast. It is my, er, opinion that RSD now encompasses the entire right side of my body, with the exception of my face and some of my stomach. Most spreads happened after a sympathetic block or other procedure directly involving a major nerve branch. None of my doctors have confirmed a spread… probably because I am too truthful and tell them I experience more pain in new areas after each procedure. Every time there is a spread I feel as if I go through a grief process all over again, morning the normalcy of the section of my body now claimed by the kingdom of the beast, watched over by an army of sneaky ninja gnomes ready to dice apart my flesh with their fiery electric swords and leave the gashing wound to fight off frost bite.

Over the past couple of months I have watched, or felt, the radius of pain and sensitivity spread to incorporate my underarm and underside of the top half of my arm. Often I wear shirts inside out if I can tolerate them at all. A week or so ago the top of my right hand turned purple and swollen for the first time. I have felt a growing resistance to either flex or close my hand completely. The “signs” are all there, sensations, physical indications, the whole package… yet this feels slightly different from other affected areas of my body… again copying the non-pattern of each spread before it.

Tonight I ask myself a series of questions. Is what I’m feeling now, at this very moment, related to an absence of Neurontin? Am I physically feeling more, like this bizarre, irritating tickle more obnoxious and painful than sticking my finger in an electrical socket? Am I mentally processing more now that part of this fogginess is parting and unnecessarily agonizing over that which I already know to be true? Or am I finally moving to that final step I encounter with each spread, grief over losing the last outpost in my upper right limb to the enemy? If it is grief, then does it have anything at all to do with the absence of Neurontin, or is this just the illusion of coincidence… for I lost faith in that word quite some time ago?

As I continue to struggle with accepting the new Carey, the one changed for good or bad forevermore, there is one piece I do not know I’ll ever find peace with… this fog that will always sit atop my brain, clouding reasoning skills, confusing emotions, slowing thought processes, causing doubt in my own logic. For as far back as I can remember this single attribute has defined more of my being than any other. I pray for something else to fill the void, something that would not have been able to show its amazing beauty had my brain not taken a step off to the side. Although it’s often frustrating not being clued in on the greater plan, I know this life has a specific purpose yet to fill. Now to find the patience while I wait at the bus stop in a remote, unfamiliar land for the correct vehicle to arrive.

To Shave, or Not to Shave…

Showers can be glorious. Step into the warm embrace of heated, running water and wash the weight of the world away. Cleanliness most certainly must be next to Godliness, for with tensions eased and our bodies feeling refreshed our minds are open to endless possibilities… or maybe that’s just our sinuses clearing. Regardless, during last night’s shower, just for a moment, I slipped into my old self pondering the ways of the universe and searching for that daily epiphany making sense of even the smallest worry pressing on my shoulders. Then the time came to decide, do I shave my legs or not?

The magical box of steam and water no longer holds the same allure it once did, at least not for me. Now every time I shower there are conscious decisions to be made. I can’t forget to first fill the tub with really warm water to protect my right foot from the needles shooting out of the showerhead. I must make sure my lovely medical grade shower seat is in position and ready for me to spend most of my shower upon it. Beyond the 5am work day “did I already use shampoo” fog of my former life, my cleansers are now lined up in order trying to prevent a step from being repeated or missed while I perceive myself to be wide awake. By this point I’m probably out of breath, my leg is screaming to be released from this hell, and I’ve started to sweat. Yes, even in the shower I can break out into a fatigue/stress/pain induced sweat. Then there’s always that one thought I put off until the end, whether or not to shave my legs. If I do, my right leg feels as if every stroke of the razor is either chopping off the top of goose-bumps or removing sections of skin all together; If I do not, the slightest brush of pants, sheets, blankets, etc make each individual hair feel as though it’s been caught and will be ripped right from the root. Last night, because it had been nearly 100 hours since my last shower, I went for it. The need to feel clean overpowered any anxiety about additional, aggravating, short term (12 hr) discomfort.

Luckily I am a fairly odor free person. So, aside from my very slick, oily hair the average stranger might not have guessed that I had not taken a shower or full bath since Monday morning. But those were Dr’s orders. One can simply not get electrical leads poking out of their spinal column wet. The internal surges from programs not working properly were already more than I could tolerate. Just say no to electrocution! The Dr also asked that I wait an additional 24 hours after the lead came out before showering, giving my lower back just a little bit more time to close and heal. Admittedly I might have taken 26 or even 28 hours before getting in the shower, but at that moment a nap was more important. I was still beaten up from the procedure, both physically and emotionally.

During my shower reflection moments I was trying to release the disappointment and grief felt on Thursday after being told a permanent Spinal Cord Stimulator was not going to be an option for me. I knew this in my heart going into the appointment, but my brain kept scrambling, searching for more than existed, more pain relief, more details to give to the doctor convincing myself that it really was going to help me. Before I opened my mouth I could see the Dr’s interpretation of my body language on his face. Doing that much searching and concentrating for the SCS’s success meant it wasn’t one. Truth be told, my body actually feels better now that the lead is out… but my heart is still on the mend.

Finding that balance between being cautiously optimistic without giving up on hope is a fine line to tread. Even though I knew the statistics going into it, I still felt like the rug was pulled out from under me. I knew that I wasn’t a failure, it just didn’t work, but I still felt that way. Knowing I’m that much closer to running out of options to treat RSD scares me. One more decision I can not control, one more possibility of a normal life swept away. I received wonderful words of understanding and encouragement from fellow RSD’ers whom I am blessed to now call friends. They are right; I needed to allow myself time to grieve for the loss of this potential treatment AND I need to find a way to shake it off, moving onto the next item on the list. There are new treatments being developed every day around the world. With continued prayers, awareness and funding for research we can be optimistic for a day when shaving our legs won’t cause so much agony, even dare to hope for a cure… cautiously of course.

Does “I Don’t Know” Mean “No”?

If I were the 16 year old living in my home the phrases “I don’t know”, “I don’t care”, and “Whatever” could be translated into a nearly definitive “Yes.” Fortunately I no longer need to endure natural hormone fluctuations causing my mind to automatically gravitate toward the negative. Instead my body’s chemistry is influenced by the myriad of drugs pumped into it 3 times a day. My body now also grapples with the sensation and idea of foreign electrical impulses disrupting various areas, often without warning. The question plaguing me is whether or not these electrical charges actually help the growing pain in my right leg caused by RSD/CRPS. I simply do not know.

Monday morning I woke to find myself very anxious and nervous, not about the pending procedure but about the various decisions I would have to make from this week forward. What if it did work? What if it didn’t work? What if I was unsure if it worked? Did I want to pursue any other options before taking a forever plunge into the world of implantations? These and more thoughts continually swirled and leapt and dove around in my head most likely contributing to the migraine I’d had for hours, if not causing it entirely. While waiting in the pre-op area for the Spinal Cord Stimulator trial I tried to convince myself those were all worries for another day, another week. My concentration should have been solely on the growing right leg pain, the migraine pounding the left side of my head, and getting through the epidural procedure implanting electrical leads into my spinal column. Unfortunately, I’ve always been stubborn and that moment was no time to change me.

Although the doctors needed more than one attempt, i.e. hole in my back, to correctly place the electrical lead, the mini-surgery went well. The forewarned anesthesiologist did end up giving me more medicine than he had originally anticipated. During the procedure we actually joked about it being time for a second martini. He was again surprised that with the amount of meds running through my veins the migraine never fully went away. My SCS, an ANS/St Jude model, was up and running while lying in the recovery room bed. The rep gave me 5 different stimulation programs to try out over the next several days, each one a variation of the next, sending static to drown out the screaming nerves of my right leg.

Unfortunately the now screaming, aching, sharp muscle spasms in my back could have cared less that their sacrifice was for the good of the whole body. I had to wait for their voices to settle before trying out the SCS during the car ride home. To my dismay each program now either stimulated the wrong leg or sent additional sharp, pinching sensations up my spine. So, I waited until I got settled at home before firing up the box again. Program after program, standing, sitting, lying down made no difference. Something had happened between getting off of the stretcher and into the car. My electrical lead had slipped. With phone calls to both the Dr’s office and SCS rep it was decided that I’d meet with my rep to set new programs once again stimulating the correct leg. Tuesday morning we met and learned that only the 1st out of 8 electrodes on the lead sent any sensation to my right leg… while stimulating the left at the same time. With 4 new, bizarre programs I went home, rested, and started over.

Within the past 36 hours I’ve been diligently trying to ignore my back’s temper tantrums, the weak, aching sensations in my left leg and any other random stimuli all to concentrate on whether or not my RSD leg feels better. “Better” according to my doctors is a reduction of pain by at least 50%. I can not express how tired I am of having to quantify pain levels on scales of 1 - 10 or by percentages. I know when it is bothersome yet somewhat blockable, consuming and ridiculous, making me cry, or wishing for a swift end in whatever form that might come. Now, with the addition of severe back pain and bizarre electrical sensations, I can still feel pain in my leg and foot, but cannot discern if it’s better or not. Additionally, because of the extra stimuli I have not been very mobile, mostly carefully shifting positions in bed and lasting no more than a half hour sitting in a chair. With so much bed rest, the RSD monster normally calms down.

My conclusion thus far:
There is a possibility that it is helping. The extra pain in my back should be causing a flare, but only did so the first night without SCS stimulation. My hip and thigh seem to be hurting less, but is that because I’ve spent so much time in bed? Then there’s a chance that the extra pain meds I had to take for back pain could also be reducing my RSD pain. All of this boils down to a big, fat I don’t know.

The lead will be removed at noon today. I’m seeing a new doctor at the Pain Center in Peabody to discuss options going forward. I can say that I’m not ready to jump directly into a permanent implant at this time. Perhaps a second trial makes sense. Maybe I pursue the few remaining options for treatment before revisiting this one. All I can do is pray that the correct path is illuminated for me, and that I take off my sunglasses long enough to see it.


Pseudo Side Bar:
Please understand, any type of needle, procedure, surgery or invasive test carries an additional risk for RSD/CRPS patients. Every time a nerve is disrupted there is a chance that the RSD monster will decide to make a summer home of the surrounding area. This is why doctors try to adhere to a somewhat proven protocol in treating RSD patients starting with medications and physical therapy. Both are non-invasive and have helped some if the RSD was caught early enough. If rounds of medications and PT are not successful, various types of localized injections and/or nerve blocks are performed. From that point there are numerous surgical procedures on the to-do list including SCS’s, nerve ablations, and RadioFrequency treatments, all of which seek to disrupt the signal of the malfunctioning nerve(s). New to the treatment scene is the drug Ketamine which is available in very few locations and still in it’s infancy in terms of how to administer it to RSD patients. (Scary and exciting at the same time. More on that drug in another blog.) My RSD monster has already developed a nice estate for itself in my right leg; I so want to avoid giving it a chance to buy up any additional property.

Intro to Me

In honor of RSD/CRPS Awareness Month I’ve jumped on the blogging bandwagon to chronicle another story of one afflicted with this ridiculous disorder. Feel free to ask questions at any time during the lecture. And please, try not to drool on the desk or snore in your neighbor's ear.


There was no significant moment causing the RSD/CRPS on the outside of my right foot to appear. I imagine I stubbed my toe or smacked my foot against something generic, a near daily occurrence, and then considered the resulting pain to be penance for my uncoordinated stupidity. Sometime during June of last year (2008) the pain in my foot became REALLY annoying. Besides swelling that looked like a bone was poking out and the immense pain when taking a step, the red/blue/purple colors were awful. Being the thickhead that I am, I waited nearly a month before seeing a doctor to address my broken/fractured foot. Little did I know that nothing was wrong with it.

Trips to my primary and orthopedic Drs, mixed with x-rays and MRIs, drugs and physical therapy, eventually left me with an initial diagnosis of bursitis between the bones of my foot. No one could really explain why I had this random, protective swelling, for a runner I am not. They seemed content to keep prescribing anti-inflammatories until it just went away. But I continued to push for answers and treatments. If the doctors didn’t have an answer I sure as heck was going to find one. In late October (2008) I was referred to a Pain Management Specialist. She reviewed my growing chart and examined both of my legs while mumbling few words to the accompanying nurse. When she was satisfied with her findings she sat/slumped on her stool. With a heavy sigh she looked up at me and said, “You have RSD.”

*** Please note that being diagnosed 4 months after the onset (or 3 after my first trip to the doctor) of this rare neurological pain disorder is really a blessing. RSD is believed to be a misfiring of the nervous system after some form of traumatic event, such as surgery or a fracture. As such, most people with RSD are misdiagnosed for months, or even years, after it begins.

Although now armed with a real diagnosis new meds did very little for my swollen, aching, burning, frozen foot AND ankle. My skin became too sensitive to wear a sock and I had only one sandal that almost fit. The first goal I set for myself, to wear a real shoe before it snowed, quickly came and went. In December 2008 I had my first surgical-type intervention. A Bier Block was performed, a localized drug cocktail infusion held in the lower limb via a strong pressure cuff for just over 30 min, and provided very little relief. After that there were 3 sympathetic nerve blocks performed by 2 different doctors which made very little difference. The most effective treatment, other than lots of pain meds and walking with a cane, has been a Ketamine infused compound (lotion) allowing me to finally wear socks and tolerate blankets in a futile attempt to warm my foot/leg. Hooray for small victories!

With each new aching, burning, sharp, sensitive movement of pain into a new area of my leg I’ve routinely denied that it’s RSD finding a new way to torture me. Just blame the overwhelming, pre-cramp sensation in my calf on being extra tired. Perhaps the sharp, caustic line up the side of my thigh was only because I did too much the day before. Like many misinformed Dr’s I needed my own physical proof, for sanity purposes, that it was Really Sucks Dystrophy spreading and not my own imagination. My often discolored and swollen knee and sensitive bum (feels as though I have a really bad sunburn… minus any heat… then scraped bare-bottomed across asphalt… inside the flesh) makes it hard for even someone as thickheaded as me to ignore reality. It’s simply part of the disease. In a mere 9 months the RSD has managed to encompass the entire front and outside planes of my right leg, from my toes to my hip, and the back of my thigh/bum. Within the past week I’ve also come to accept RSD has infiltrated my lower back.

On Monday, May 4th, my grandmother will drive to my home and bring me to have another procedure done. The doctors are hoping for a 50% improvement with a device called a Spinal Cord Stimulator (SCS). Think of it as a pacemaker for the nervous system. Monday’s trial implant will officially start my transformation into a cyborg with electrodes channeled into my spinal column connected to an external battery pack. I will also come home with my very own remote control. Whether or not I decide to proceed with a permanent SCS implant (battery will go in either my bum or tummy) will depend primarily on the outcome of this trial. Of course there’s more to the story than that, but I’ll save it for another lecture.

Although there is no cure for RSD/CRPS, new treatments are being developed to help us to LIVE with this awful disorder. The strength within the RSD support community is just as overwhelming as the disorder itself. Every day is a new battle and a new victory. I absolutely thank God for the unwavering love and support of my family and friends. Without them there's no doubt I would be a puddle of hurting goo hiding in a corner somewhere. I do continue to hurt and occasionally feel like goo, but hide a lot less.

For more information about RSD/CRPS, feel free to visit:
http://www.rsds.org
http://www.rsdhope.org
http://www.rsdfoundation.org