Back during the years when Dr. Plance was trying to find some way to get my weak, fragile Ehlers-Danlos body to just freaking heal a little already!!! (2006-2014, tortured years of my life of tremendous disability, yet I remember them fondly because of the relationship I had with him and all the opioids I was on) we looked around for a commercial lab test for ascorbic acid (Vitamin C). There wasn’t one.

Alas, such analysis was only available in a research setting.

So Dr. Plance and I went on with our arguing, guessing and observing. He is never boring.

Then, when I began injecting Vitamin C daily in December 2012, it lead to a complete turnaround in my EDS misery. I became able to benefit from exercise. I got off pain meds. I traveled the world. I went back to work. I started this blog.

I listed 2014 as the end date of our experimentation because healing took time and I was never sure how well I was going to get: a little? a lot? Improvements were gradual. July 4, 2014 was the date I finished my titrate off my daily morphine and Vicodin and that certainly was a finish line. Although recovering from long-term opioid use is a nightmare of its own.

How Do C Shots Work?

I get asked this a lot. My answer:

I suspect that the genetic error that causes hEDS in me (as doctors think different single gene mutations cause the disease of hEDS which is why it has not yet been found) is detrimentally altering the way my body metabolizes C.

Injecting ascorbic acid into my fatty backside gets around this, and profoundly. Perhaps it is the slow absorption from this delivery method, and that I do it EVERYDAY. Perhaps that makes it available so my body can get some and do some repair.

But that’s just my guess.

In time, research will answer this question for real.

Will this work for you?

You would have to try and see.

You might have a different genetic cause for hEDS and therefore a different error of metabolism. But since C is so important for collagen, you might benefit from C loading this way even so.

Give the C shots time, and yourself time to get used to doing them because they do sting.

Start with a really low dose, like 200 mg. Get your courage up.

Inject as frequently as you can tolerate, like once every few days. See how ya do. Ascorbic acid is extremely safe and inexpensive.

And remember never to take advice from a blog on the internet.

Commercial Test for C Deficiency

Sometime recently, a Vitamin C plasma test became available from LabCorp. I went out and got it done!

Note that this test is not FDA approved.

Some of my EDS friends have had this test and found themselves to be low or very low in ascorbic acid.

I’m not willing to go off my daily injections of Vitamin C to see what my baseline would be, as I value all my improvements and my current quality of life, so my test results below reflect my current daily shots of 1 gram.

My C blood level is at the high end of normal. Yay!

2 mls = 1 gram.

I prefer a shot of 1.5 ml, which is a 750 mg shot. It hurts that much less!

But with global pandemic and all . . . best to keep one’s immunity up.

I like being at the high end of normal. I am feeling good. So maybe this is a great dose for me. I’ll repeat the test when I change my dose and time has passed.

I don’t do this on my own. My lovely primary care doctor watches over me.

Vitamin C in the Human Body

How Vitamin C is managed in the human body is very complex. Different organs require different concentrations of C to be healthy. So a blood level only begins to tell the story.

Read more at The Pharmacokinetics of Vitamin C.

I would imagine that a severe deficiency might take many months of C loading to remedy. The body would start to repair collagen (about 80% of cells in the human body are collagen cells) and distribute the C in organs. That could take, like, years!

Indeed this was my experience, when I began injecting ascorbic acid daily in December of 2012. Slow and steady feeling better, taking back my life, benefitting from other treatments because my health was no longer in the toilet.

Note: My doc ordered these other labs because C levels affect them.

I kept improving for years.

Recovering from Ehlers-Danlos

Here’s what worked for me:

1. Improve collagen by injecting C daily. DAILY was much more effective than 3 x per week. I know because I tried.

2. Exercise!

   Exercise is necessary for human health, for every human.

   Vibration, impact and weights are best for healing collagen, and also for strengthening bones.

   Don’t waste your time and damage your joints further with Pilates and yoga. Do real exercise. Get circulation going. Turn that collagen over!

3. Learn excellent posture so you stop irritating your joints by overextending them. See my Shop page for suggestions.

4. Physical therapy.

   You must learn to use muscles to support your joints. You need expert help.

5. HEALING TAKES TIME! Injecting Vitamin C has given me an overall relief and improved well-being. I was extremely rundown and sleep deprived from pain and painsomnia plus straight up insomnia. See a cognitive behavioral therapist or psychiatrist for education on sleep hygiene.

6. Pain is a brain disease and requires other treatment.

   The more pain a person has, the better the brain gets at focusing on and perceiving pain. Oh, the irony!

   Interrupting the pain feedback loop is big project. What has helped me most reset my sensitivity to pain feedback:

   Drugs

   Low dose naltrexone

   Ketamine infusions (oops I haven’t written about that yet)

   Brain therapy:

   Neurofeedback (success depends on practitioner and quality of software)

   Learning Japanese (gave my brain something else to do)

   Virtual reality pain therapy (OMG got to write about that, it is A-M-A-Z-I-N-G)

   Body treatments:

   Light manipulation of fascia to break down adhesions, done by a skilled physical therapist

   High-intensity laser (did I write about that?)

   Pain re-education: Pain makes you fearful of doing the littlest things. Pain makes you lose your ability to set goals and follow through, even small ones. Engaging in life, going back to work, finding out who I am other than a disabled person has taught my brain there is more to life than pain. Brains get stuck in ruts.

   Emotional growth: Chronic pain ruins one’s ability to connect with others. Re-find it.

   Stimulating the nervous system:

   Through balance and coordination work

   Work the soles of feet and palms with spikey balls

   Any sensually immersive experience like cooking, listening to music, looking at art. I benefited so much from swimming in the cold Pacific Ocean in the winter.

7. Avoid brain damaging drugs. I skip or limit drugs that reduce cognitive function. Antihistamines and some anti-depressants, and other drugs commonly given to EDSers will cause more brain fog, fatigue and disability. Read more at Dementia Risk May Be Increased by Some Common Drugs

I am not normal, but I am close.

My body is still a very sensitive one.

I don’t quite have the energy of a normal person, but I am not far off.

I had been taken down by EDS at age 14 and totally disabled since then. Now I feel better than ever.

My bad days now far surpass my very best days before Vitamin C. Really, there is no comparison.

How Important is Ascorbic Acid?

Also according to LabCorp:

C is required for the function of several enzymes involved in the production of collagen, an essential component of connective tissue. These enzymes are required for the molecular cross-linking that gives collagen its elasticity. Vitamin C deficiency renders the polypeptide unstable and unable to self-assemble into rigid triple helices. Impaired collagen production can result in poor wound healing and a weakening of collagenous structures leading to tooth loss, joint pains and bone and connective tissue pathology and blood vessel fragility. 

And we know all about that, don’t we.