In the spring of 2011 I got what I thought was the flue. It was the first time since contracting Chemical Sensitivity that I had anything like a “normal” cold. Obviously that should have been my first clue. The symptoms increased to the point where I could barely eat, sleep or breathe. I sounded like I had Pop Rocks in my throat. That sound ended up being an important clue. I had pneumonia. A week of antibiotics didn’t do any good (we found out later it was viral based instead of bacterial) and I ended up in the hospital. I spent nine days on a ventilator while the doctors killed off not only the pneumonia but also H1N1 and a staph infection. It was a tough two weeks, but with a lot of help and family and friends I made it through.
I had been warned that it could take as long as six months to fully recover and get a clean chest x-ray. What no one expected was the assorted viruses causing long-term damage to my central nervous system. After two and half years of spiraling symptoms I was diagnosed with Central Pain Syndrome in November 2013.
Central Pain Syndrome (CPS) is a full body form of chronic pain caused by damage to the central nervous system. The most common cause is a stroke but, as in my case, it can also happen because of a virus or some form of chemical toxicity. There is no known cure and very little pain relief that works on a consistent basis for the majority of sufferers. In other words, CPS is right up there with Fibromyalgia, Multiple Sclerosis, and a host other chronic pain illnesses. And it sucks. Great big donkey turds.
For me CPS began with hyper sensitivity in my fingers that made things like pulling an egg from the fridge feel like holding on to a piece of dry ice or holding a warm tea cup feel like playing with fire. It evolved to include odd muscle twitches that can feel like someone’s just given me an electric shock, utterly random pain flares in all my extremities, and an intense form of skin sensitivity that I took to calling “freezer burn” because it felt like my skin was burning cold and freezing hot at once. For added fun, every symptom can be triggered by hormone shifts, chemical exposure, and pretty much any kind of stress, even the happy kinds.
With guidance from my Neurologist and General Practitioner, I’ve tried all the current Fibro inspired pain medications, none of which help and some of which make everything worse. I’ve also discovered that I cant take NorCo (opiate derivative) because after the first round of “oh thank the gods, the pain is diminished” everything ratchets higher than were I started. I’ve had the most success with alternative therapies, massage therapy, sauna, nutritional work, herbal supplements, gentle exercise, meditation and journaling (because the best thing for a writer is be able to write out her feelings), and it would include hot tubs but I’m allergic to chlorine and bromine.
After nearly a year of learning about this illness and coming to terms with this new dynamic in my life I’ve learned that nothing has really changed for me. I still have a chronic illness (sorry, two) that messes with my head, my body, my sleep, and my heart but doesn’t actually change who I am unless I let it.
One thing is very clear from all the research I’ve seen and lived is that distraction is good, doing things that take my mind off the pain can be as effective in some cases as pain meds, which means that the ceramic studio is a form of health care, how cool is that? Lowering my stress generally and specifically will always be essential. I have to stop a lot of the “well its not THAT bad” stuff I have been doing. It is THAT bad and if I let it get worse it’s going to make things even worse in the long term. Doing things that make me happy are actually going to be important for my health – go fig. And as my husband likes to remind me, doing things that give me purpose, not just work for works sake or distractions sake – but that fill my heart and my soul, inspire my passions, are crucial to my health. Now more than ever in my life, what I put my energy into needs to sing to me and from me. If I don’t? Its all too easy to let the pain and the despair take over, and I am not willing to let that happen.
Writing this up and sharing it with people wont change my health, but it does help me remember to be conscious of my actions and my choices. To rest and go slow when I need to, without fighting, to smile and smell the roses and wear glitter and color and clothes that are comfortable, do pretty things and follow my heart. To connect with friends and family and not let go of the ties that keep me grounded and sane.
See, glitter really is a girls best friend
What is Central Pain Syndrome? – some links and quotes from around the web.
“Central pain syndrome is a neurological condition caused by damage to or dysfunction of the central nervous system (CNS), which includes the brain, brainstem, and spinal cord. This syndrome can be caused by stroke, multiple sclerosis, tumors, epilepsy, brain or spinal cord trauma, or Parkinson’s disease. The character of the pain associated with this syndrome differs widely among individuals partly because of the variety of potential causes. Central pain syndrome may affect a large portion of the body or may be more restricted to specific areas, such as hands or feet. The extent of pain is usually related to the cause of the CNS injury or damage. Pain is typically constant, may be moderate to severe in intensity, and is often made worse by touch, movement, emotions, and temperature changes, usually cold temperatures. Individuals experience one or more types of pain sensations, the most prominent being burning. Mingled with the burning may be sensations of “pins and needles;” pressing, lacerating, or aching pain; and brief, intolerable bursts of sharp pain similar to the pain caused by a dental probe on an exposed nerve. Individuals may have numbness in the areas affected by the pain. The burning and loss of touch sensations are usually most severe on the distant parts of the body, such as the feet or hands. Central pain syndrome often begins shortly after the causative injury or damage, but may be delayed by months or even years, especially if it is related to post-stroke pain.” – http://www.ninds.nih.gov/disorders/centr
“CPS patients deal with PERSISTENT pain. It is characterized by a mix of pain sensations, the most common of which is constant burning, which may be unrelenting and occur over large areas of the body. CPS may also include other pain sensations such as freezing, aching, ballooning, stretching, crushing, spasticity, shocking/electrical type jolts & stabbing.”- http://centralpainsyndromefoundation.com/
A big thing thats lacking with research and treatment of CPS is a clear sense of how to do more than put a bandaid on the pain.
“People go in and they complain about essentially feeling like they’re burning, freezing, electrical stab pains all day long all the time, and they’re told there’s nothing clinically that we can find that’s wrong with you,” she said. “You’re either drug-seeking or you’re crazy.” -Huffpost article- http://www.huffingtonpost.com/2013/03/01/c
At the moment there is one main book that presents all known research and findings about CPS: “Central Pain Syndrome; Patholphysiology, Diagnosis and Management, 2nd Edition” by Sergio Canavero and Vincenzo Bonicalzi
A fully updated new edition of this definitive, unrivalled, no-nonsense textbook, Central Pain Syndrome: Pathophysiology, Diagnosis and Management provides new treatment guidelines that aid the reader in effective management. • Encyclopedic coverage of all drug and surgical therapies, including the hot field of non-invasive and invasive cortical stimulation • 26 totally rewritten chapters include expanded sections on deep brain, spinal and other forms of stimulation, and a chapter on the efficacy of alternative and complementary medicine • Critical analysis of all current competing theories, including an expanded account of the leading dynamic reverberation theory which now incorporates a cortical attractor-based model • Clear-cut indications on drug usage, with black boxes for ineffective or dangerous drugs A classic textbook widely hailed on patients’ websites, this is key reading for medical specialists and trainees in pain management, neurology, neurosurgery and anesthesiology, as well as for patients