On Where to Start with Injecting C
From that greeting card Mr. Pennington and I are holding, purchased from the gift shop at the Mütter Museum College of Physicians of Philadelphia:
I’m so sorry you’re sick. I want you to know that I will never try to sell you on some random treatment I read about on the Internet.
Right? Right!
My blog has the following disclaimer:
LessFlexible.com is a personal blog for entertainment. Nothing in the content should be considered, or used as a substitute for, professional medical advice, diagnosis or treatment.
Right? Right!
I thought only Mr. Pennington and his aunt read LessFlexible, but It turns out there are actual Ehlers-Danlos victims who do too. They are getting their hands on ascorbic acid and injecting it. Wow!
Unfortunately, they ask my advice.
I Am Not a Doctor
I am not a doctor, just another victim like you.
I can only tell you about my experience. On that I am the world’s authority.
I pay close attention to everything I go through. I always try to figure out how to get better. This is why I don’t need to waste time meditating or eating a raisin for five minutes. Plus I don’t want to be enlightened. I want to look good and have fun.
Quite accidentally, I discovered that injecting Vitamin C every single day makes my wretched case of Hypermobility Ehlers-Danlos Syndrome not so bad. Even my own doctor had a hard time believing it, because I benefited little from large amounts of oral C, so why would injecting it make all the difference? Who knows. But it is awesome that it does.
I became able to rest, recover, heal, build muscle, and just feel so much freaking better all around. Now, I exercise regularly. I got off all pain meds. With help from the California Department of Rehabilitation, I went back to work. F*ck yeah!! Most of my arthritis healed, too. I do need to get around to posting about my experience at the Dept of Rehab because they were stellar.
I’m not cured. I am not normal. My HEDS is just very well managed. F*ck yeah!!
This shouldn’t be too surprising, because vitamin C is so important to the formation of collagen and to countless processes in the body. We EDSers present with many symptoms of the disease of scurvy (C deficiency), so it is no stretch to think a treatment for scurvy might do something for my condition.
Rare genetic disorders are curious problems, but you already know that because you read my last post, Let’s Learn About Rare Genetic Disorders. As you learned last week, when a compensation for the genetic error is found, the body needs it frequently as the genetic error is ongoing at every moment. So kinda makes sense I might need C injected daily, right? Right!
The difference in my level of health (fatigue, rest, recovery, energy) between injecting daily versus less often was tremendous.
Results Not Immediate
To recover from HEDS, in addition to injecting C every day (now the drug Ascor), I need:
Tons of exercise, balance work and posture correction. This is ongoing. I do not waste time on Pilates or yoga as I am already too flexible. What I need is stability, strength, improved proprioception and balance. I love light weights, TRX and my physical therapist. I also walk everywhere I can, carrying a big heavy bag. It took a lot of work getting strong to be able to do that. An excellent exercise for back strengthening is gently swinging your arms when you walk.
Salt loading to minimize symptoms of POTS (I pour tons on my food, yum!). With high enough salt intake I am not dehydrated.
The drug naltrexone. In my experience, it helps heal the brain from a lifetime of perceiving pain. Do whatever you can to improve cognitive function as EDS is a brain-overloading disease that makes you stupid. Fight it.
I repeat this list often, so you, Dear Reader, take note that the sequence of events was NOT that I injected some C and my life changed immediately. No, no, no.
I was a very very sick banana. I had been disabled pretty much my whole life. I am a very flimsy person. I had terrible insomnia most of my life. I had no strength and never had any endurance. Like, I couldn’t even make it through a day. Sadly that is not unusual for HEDS.
But good news, I continued to heal and improve for years. Luckily I kept up my regimen of daily injections of C and exercise, as there was so much to look forward to. Since no one had ever done this before, no one knew this would happen. This is where it pays to pay close attention and always try to figure out how to get better. I am ruthlessly honest with myself about what is working and what is not. It takes time to figure that out. I do not give in to health trends, especially ones not based in science. I am interested in results, not ideology, not in what is popular.
Never ever in my life, not even in the best days of my health, was I as healthy, strong and resilient and I am now.
A recent PubMed article stated:
The heritable disorders of connective tissue are a group of high morbidity, high-disease-burden conditions, many of which are underdiagnosed and poorly understood.
Yes, we are very sick people and our problems are not understood. For me, injecting Vitamin C everyday has been tremendously unburdening.
The C injected intramuscularly every day
made healing possible and allowed other interventions to work.
I also had the terrible problem of ending my years of continuous opiate pain medication. Coming off Vicodin and morphine devastated my health. I would have been back to work much sooner, except for the mess long-term opiates left behind. I totally get it why people leave rehab, overdose and die. These drugs are so damaging to the brain and body. I’m not trying to discourage you if you are on those drugs, I’m just being honest.
Watch it on the weed, too, because that is a powerful and highly addictive drug that changes in the brain in unfortunate ways. See my post On Medical Marijuana. THC is also anticholinergic, which means it takes a big toll on cognitive function, injures the brain and contributes to dementia.
What choice do you have if your pain is that bad, right? Oh well. In any case, I hope you are better off than I ever was. You probably are.
Ascor Prescribing Information
Let’s start here, shall we.
What would McGuff say to try? How about injecting 200 mg per day if you are an adult? This is what McGuff got FDA approval for, for the treatment of scurvy. Full PDF here.
You can see how you react on this small dose, hopefully without creating more problems, which is the best way to go. Since my body is delicate and sensitive, I find gentle approaches work best.
Get used to doing the shots. That dose shouldn’t hurt too bad. After time, see if you feel any better. Hey, that 200 mg per (about 400 mls of Ascor) day might even be enough for people less severely affected than I am.
Try it for six months. I noticed a big difference after daily shots for three months, and also six months. But I continued to improve for years.
Weight and vibration training force connective tissue to repair stronger, so do that, too.
I had a lot of sleep to catch up on. Do talk to your doctor about getting off meds that interfere with REM sleep because a lot of them do. You need that deep sleep to heal.
Yes, the Ascor prescribing sheet does say intravenous (IV), but I use it intramuscular (IM) as I only ever have. It also says to use it temporarily, because this is for the treatment of scurvy, and scurvy goes away, unlike a rare genetic disorder. HEDS is not going anywhere.
I have talked to EDSers who have done IV infusions of C. They have not had the improvements I have had. This makes me think my beneficial results might depend on the slow absorption of the C through my fat, plus getting it into my body every day.
But no one knows. You and your doctor will have to figure it out for you.
My Dose
I inject 1.5 mls, which is 750 mgs of Ascor per day. It may be more than I need, but it’s working so I don’t want to change it.
I have been injecting Vitamin C daily for 6 1/2 years. My dose has always been at least 750 mg. I have often done more, when getting sick, very sore from exercise or when in opiate withdrawal, as Vitamin C can ease that.
You know what else is interesting? Ascorbic Acid seems to reduce pain. And vitamin C aids in healing. In this study, guinea pigs with scurvy had high histamine levels, which came down when they were given scorbic acid. What a fantastic treatment for us.
I had doubled my dose to 1.5 mgs for the last six months. Recently on an ultrasound, it looked like a kidney stone might be forming, which is a potential side-effect from C loading. I’m crossing my fingers it breaks up before becoming a problem. The doctor said don’t worry about it until I have symptoms of a kidney stone.
With my current quality of life, the risk is 1,000,000% worth it!
Before I began injecting C daily, I tried and tried and tried and tried and tried and tried and tried and tried and tried and tried and tried and tried and tried and tried and tried and tried and tried and tried and tried and tried and tried and tried and tried and tried and tried and tried and tried and tried to get strong and build up tolerance to life. I always failed. Until the daily C shots.
The Joy Of Life
A great joy of my life is getting out of bed and swimming with my friends, the dolphins, and some other humans. F*ck yeah!! Did I mention I run on the sand, too? Not to brag or anything.
It was a cold winter. Now it’s summer, and it’s still cold out there. I wear two layers of wetsuit, three swim caps, gloves and booties. (I had taken my gloves off in the pics below because they got full of sand from riding waves into the shore. We get out and run around the lifeguard tower after swimming around the buoys.)
For most of my life, I wouldn’t have been able to get all that gear on. If I had gotten it on, I would have been sweaty and exhausted with sprained fingers and wrists.
Then I would have cried from the pain of the pressure of the wetsuit. The caps and goggles on my head would have been utter agony. I couldn’t have handled it for one minute. And I would not be swimming in the surf. I would not have had strength or energy enough, even if I could have survived getting suited up.
But now, my alarm goes off. In 10 minutes, I make a coffee, pull on my wetsuit and head out the door to the beach. I wake up feeling rested, with energy, ready to go. F*ck yeah!!
Building Resilience
When I returned to swimming in early 2018, I did not think it would go well. I just wanted to have some fun for the summer, and then I planned to quit. It was rough, but my body adjusted. It turned out to be marvelous for my strength, health and for my morale. So I kept swimming.
For many months, at the start of every swim, whether it was in a pool or the ocean, I would experience an autonomic crisis. I would feel my blood pressure drop. I would feel the burden of my confused brain trying to figure how to manage the change in temperature and gravity and moving all four limbs at once. Overwhelm!!
You see, because we are so flexible, our brains get information back through the nervous system that doesn’t compute because humans aren’t supposed to be so stretchy, and we are stretchy everywhere. The brain can’t regulate the body quickly or efficiently because our tissue doesn’t respond like it should. This is torture.
At the start of every swim, I would be flooded with feelings of panic even though I am unafraid. My body would be screaming for me to stop. It would be hard for me to find the energy to stroke. I would struggle through the weakness. I would focus, reminding myself this will pass. I kept swimming. In a few minutes, my body adjusted and swimming became easy.
Then one day, I noticed that was no longer happening. No drama, just dash into the waves and I could swim just fine. Good job, body!
My point? It takes time, a lot of time for my flimsy, defective HEDS body to learn to cope with the pressures and forces of life on Earth and run itself better.
But because of the injected Ascor every day, and all of my other efforts, mine does. F*ck yeah!!