On the Disease of Scurvy
I once told the Chief of Medical Genetics at UCLA, “I think I have an inherited form of scurvy.”
Years ago I read about cases of scurvy during the Age of Sail, down at the Los Angeles Public Library, which is where I had to go because there was a time, Kids, when there wasn’t much on the Internet. What I learned inspired me to try even more C loading by intramuscular injection because the symptoms of scurvy sounded a lot like my suffering. The relief I got from daily shots of ascorbic acid makes me think that a primary feature of Hypermobility Ehlers-Danlos Syndrome is chronic C deficiency, at least in part. Where all that C I eat is going, only Dawg knows. But getting ascorbic acid into my body by sticking it into my fat everyday (not my digestive tract, not into a vein) really does something for this bendy person. I got off all my pain meds and got a job. Yay!
In the 1500s, Europeans developed the technology to make ships that could sail around the world. They did not know humans needed to eat Vitamin C, so they did not bring food containing it onboard. Back then, no one knew what Vitamin C even was.
We humans do not make our own our supply of ascorbic acid. Most mammals do. On long voyages, rats and dogs did just fine, but thousands upon thousands of sailors died a harrowing and painful death resulting from C deprivation. No one knew why. Vitamin C is also called anti-scorbutic acid (ascorbic acid for short) because it is the remedy for scurvy. That is how it got its name.
If I remember what I read correctly, it took sailors 3 to 6 months without C to become totally disabled. Once thoroughly deficient, they could no longer work. They ached. They could not get out of bed, could not think, their old wounds reopened, healed broken bones un-knitted at the site of the break. Basically, their collagen fell apart and they got extremely sick. Eventually, without C, they died a horrible death. Severe scurvy is rare in today’s world, and it is treated quickly so there are no cases that extreme.
How fast those sailors fell apart depended on their level of health before C deprivation. The captains, being of a higher social class, were better fed and had less disease to start. They lasted six months. The lowly, poor sailors forced into service often lasted only three, if I remember this right, as it has been years since I read this. The point worth noting is that the body needs more C during injury, stress and disease, so the sicker and weaker succumbed faster. In fact, mammals that have the gene to make their own C make more when they are sick or injured.
This is also interesting because six months was a big turning point of daily C shots for me.
I had tried repeatedly to get off the heavy pain meds when I was getting sporadic C shots. I was feeling better. I was stronger, but I could not quit the morphine, Vicodin and Soma because I was always in too much pain. I am speaking of the pain from getting destabilized, not the discomfort of opiate withdrawal.
My spine is extremely flexible (I should have been a backbender in the circus) and one wrong move, one overloading of my spine, from, say folding laundry, or heaving my cast iron pan around the kitchen, and my body would be struggling to recover for days.
A normal person would have to fall down the stairs or have a bad car accident to feel something like my EDS strain, but still it would not compare to the non-stop, bizarre agony my body would go through.
Another problem with EDS is our brains get incorrect feedback through our nervous system because we are abnormally stretchy and the brain is not calibrated for this and does not interpret it properly. What we suffer is so beyond pain. We have debilitating brain overload and nervous system confusion on top of being too fragile for this world. (See the bottom of the post for modalities I have used to help my brain.)
After reading about scurvy, I tried shots of ascorbic acid more and more frequently. From every two weeks, to once per week, to every three days.
In December 2012, I went on a trip without Mr. Pennington, which I only had the energy to do because of the more frequent C shots.
I had a miserable time. Later I signed a legal agreement not to talk about what happened, but it is really funny. Too bad I can’t tell you.
I got a horrendous head cold, as it was all rather stressful.
I had a week left before I would be back home. I was so incredibly sick. I was in a state of panic because I was still traveling on my own. Oh f*ck!
I started injecting C every day.
Dr. Plance and I exchanged some heated emails about this, but then we both enjoy a good argument. He didn’t want me to inject so frequently. I didn’t care. I was desperate. I did it anyway. My head cold was so severe I can’t say if the C helped or not but I made it through the rest of the trip.
Upon returning home, I had to have more gum grafting before the end of the year for my insurance to pay for it. What is that you ask? Gums are straight up collagen. I am a very flimsy person and my gums sort of vanished. Since I’d like to keep all my own teeth until I die, I have had tons of gum grafting. In this delightful surgery, the periodontist cuts a piece of gum from your palette and sews it onto your teeth where it should be, because the best donor for you is you. It is so miserable and so expensive. I would rather do anything else medically than that. Oh well.
So f*ck it all, in December 2012, back at home, I kept up the daily C loading by injection, as much as I could inject. The worst side-effect might be a kidney stone, and I’d had one of those when I was 19 and knew how bad that could be, so I knew I could survive one again.
I had my grafting surgery done while I still had that horrible cold. After, you are left with two big stitched up wounds to heal in your mouth. One side-effect is weight loss. Another is cheek bruising. Did I mention this procedure is done with novocaine?
And f*ck me, the daily C shots helped. I healed well from my gum surgery. I kept injecting C daily.
After three months of daily shots, I really thought I was feeling better but I was not brave enough to try physical therapy or another titrate off pain meds.
I got a fitness trainer certificate instead, so I could do better in physical therapy. It was Mr. Pennington’s suggestion. He’s so smart.
Hey, I could think enough from all that injected C to successfully pass that course, which was really hard and a lot of work. That was evidence that big changes were happening inside my body. Yay!
After six months of daily shots, armed with a good understanding of anatomy and how to stimulate collagen repair and stabilize joints through exercise, I found a new physical therapist. I did vibration training and light weights. After six months of physical therapy, I started another titrate off heavy pain meds was. This time, I succeeded. Yay! Seven months of titrating and I was off my years of daily Vicodin and morphine. Then started a new long, horrible chapter of my life: not recovering from long-term opiate use. More on that later.
So I have continued the daily C shots ever since.
Flimsy Me, Now
Yesterday, I got up at 6:00 am to run laps on the sand and swim round and round a buoy with dolphins in 60° water with a triathlete group. Those people are fun. Brrrrrrr.
Then I came home, washed my hair, put on a shirt and tie (I’ve taken to wearing Mr. Pennington’s) and worked until 9:00 p.m. I walked a total of 4.3 miles at work, not including running on the beach as my iPhone was not on me then.
Who would have thought flimsy, disabled me could live like this? I didn’t.
I still have hEDS. I just seem to have a much lighter version of it now. I can keep functioning no matter what stunt my body pulls on me.
I Just Lowered My C Dose
I had some imaging done last week and it looks like I do have a kidney stone forming in my left kidney, so I lowered the amount of ascorbic acid I inject daily. I am crossing my fingers that sucker breaks up.
Other Essential Treatment for My hEDS
I drink salty water all day, so my blood pressure stays up and I stay hydrated. Salt depletion causes fatigue, brain fog and bone loss. I had repeated lab work done at my endocrinologist. It seems I chronically pee out sodium. You can ask for blood and urine tests to see how you are managing sodium.
Tons of exercise. Tons of physical therapy. I must stabilize my joints through my own strength. I must train my nervous system with balance and excellent posture. There is no substitute, no brace, no surgery that can do anything like what I can do for myself with muscles and stronger collagen and using my joints in a healthy manner.
I push my nervous system to learn to cope, by doing things like getting a job where I stand all day and plunging myself into the freezing ocean. Take baby steps on activities like this because they are overwhelming.
Brain rehab with naltrexone. This is the most amazing drug that tones up the brain and makes it more resilient. I have found benefit from all doses, from .2 mg to 50 mg.
Brain rehab with Microcurrent Direct Neurofeedback. This system stimulates the brain with a gentle signal that interrupts stuck patterns. This gives the brain and nervous system an opportunity to sort itself out. Like giving your computer a restart. Since my hEDS brain is constantly getting wacky information from my body, this has been so useful for helping my brain figure out WTF is going on and run the whole show better.
Send the honorary medical degree to lessflexible at gmail dot com. I check my messages about once every six weeks. Thanks.