In the spring of 2011 I got what I thought was a regular case of the “con crud” otherwise known as event transmitted influenza. It was a logical assumption. A month earlier I made a rare trip to PantheaCon, a Pan-Pagan/Spiritual conference in San Jose that I had been involved with until I was diagnosed with MCS. I had been longing to see friends and the extended family that gather for the event. At that point I was doing fairly well managing the MCS, so we figured that with some additional precautions it would be worth the risk. I planned two outfits, both designed to cover me from head to toe to limit skin contact with VOCs. I even changed midway through the four hour visit. What I had not planned on was getting the con cold or the fact that while MCS is not an auto immune disorder, my immune system had been through hell for the previous five years and was not up to coping with a hotel full of people saying hello to each other with hugs and kisses.
We got home from the con and went into recovery and cope mode. I took my assorted medications and herbal supplements, rested a lot, drank plenty of water, and tried to keep the whining about not feeling good to a minimum. In my head, that should have been the end of things.
For good or ill, that was the first time since contracting MCS that I had anything like a “normal” cold. Obviously that should have been my first clue. Suffice to say it might have started as the flue, but it just kept getting worse. The symptoms increased to the point where I could barely eat, sleep, or breathe and I was deeply amused that I sounded like I had Pop Rocks in my throat. After telling the nurse at my allergist’s office this, she encouraged go to an urgent care clinic for x-rays. Turns out, that sound is a sign of pneumonia. The x-rays showed pneumonia in the lower part of my left lung. I was put on a week long course of antibiotics and told to rest.
The day I took my last antibiotic I called my doctor. As far as I could tell the antibiotics hadn’t worked and I was still sick. In fact I was a whole lot worse than “sick”. My lips were blue, I know this because I remember being fascinated by how they looked in the mirror and decided at one point that the shade of blue was called Periwinkle. (For those playing the home game, that was NOT good.) The receptionist put me straight through to my doctor who listened quietly while I told her what was going on, then told me to hang up the phone, call a friend, and have them take me to the hospital.
I remember that it took our younger son and the friend who came to get me a long time to walk me out of the house and down the drive way. I remember my friend bringing out a wheelchair and pushing me past the front desk of the ER and directly into a large room with machines and people in scrubs. I remember arguing with a nurse at one point about medication, and her being very patient with me. I remember struggling with the c-pap machine they put me on and another nurse telling me that they needed my O2 levels to come up or they would have to intubate me. I remember not wanting that and trying to cope with the forced air in my face. I remember a dream of standing before a massive, statue of Ganesha that was glowing with golden light. And I remember my husbands voice telling me I was ok. That I had a tube in my throat. That they were going to take it out in a moment and to be calm.
By the time I woke up I had been in ICU, on a ventilator, for nine days while the doctors worked to killed off not only the viral pneumonia but also the H1N1 virus, and staph infection that had been trying to kill me.
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 that in that six months I would also have hives on both arms, from wrists to elbows, and a growing collection of pain issues that would take two and a half years to identify as Central Pain Syndrome.
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 causing a nick or lesion on some part of the brain stem or anywhere along the central nervous system. There is no known cure and very little pain relief that works on a consistent basis for the majority of those diagnosed with CPS.
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 tried a host of 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 where 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.
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 really is a form of health care. Lowering my stress generally and specifically will always be essential. I had to learn not to wait out the pain and instead address it as soon as possible. To stop trying to wave it away with “its not that bad”. The fact is it is THAT bad and avoiding that fact doesn’t help. Doing things that make me happy are actually 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.
One of the things i was missing desperately after getting sick and then sick again was adventure. I had lived a busy and active life before the MCS and all that had slowed to a crawl. I wanted at least some of that back. The CPS complicated things but it also added impetus to getting out of my little boxes and finding ways to live again. The first trip my husband and I took after I recovered from the hospital was a drive to Hearst Castle. I had to use a wheelchair to get around because I was still so drained and in a lot of pain, but it was well worth it! There have been more trips and even a few concerts and plays since then. Its not so easy to just pick up and go on a whim, but planned events and trips are just as much fun for being safer, so I’m good with that.
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