Is Ehlers-Danlos a Disease of Dissolving Collagen?
I read about this on Dr. Forest Tennant’s site for Intractable Pain Syndrome, a disabling disease that results from EDS.
Makes a lot of sense to me.
If you had told me any time during the many years before I was officially diagnosed with Hypermobility Ehlers-Danlos Syndrome (Cedars-Sinai, Los Angeles, 2012), that I have a disease of dissolving collagen, I would have said
“That sounds like how I feel!”
But only if you had explained what collagen is.
I had a conversation with Dr. Tennant about my treatment.
He said he believed me, that injecting Vitamin C everyday (which I have been doing since December 2012) could be effective. I appreciated him saying that because, yes, it is hard to believe. Why would this even work?
Because a deleterious gene causes an on-going error in the production of an enzyme or protein. The daily shots of ascorbic acid are doing something to counter my deleterious gene, still as yet unknown. I have had every genetic study I could and am still cause not found.
Plus EDSers are often saying the latest thing they are trying has fixed them, as we have so many crazy symptoms, are so sick and so desperate that functioning at all is out of reach, which no one understands, and the torture of EDS is indescribable, so it’s actually hard to tell.
Why should any random person believe me?
You’d have to follow me around and see how much I am doing to believe someone who had been so sick as I was (flat out completely disabled since age 14) with EDS could improve so much.
Or you could read my blog.
I did get off daily opioids. I went back to work. I live a pretty normal life. I’m a little high maintenance, a little prone to pain, but I wake up rested and refreshed everyday and can do want I want now.
Healing took time, from my ravaged state of health. But I had faith and kept exercising, getting stronger and finding new challenges to rise to, never knowing where the limits for me were, now that my collagen was being supported with exogenous, intramuscular ascorbic acid on a daily basis. Phew! Caught up? I try to sum it up regularly because who was the time to read this blog?
In fact, I have never stopped improving.
Every year I end up saying, “I feel better than I ever have in my life!” I even said it this rotten uyear.
There’s a hidden gift of EDS, or rather, EDS well-treated. But that’s only because untreated it is so so bad, if you are as sick with EDS as I was, which not everyone is, but plenty of people are.
Dr. Tennant’s recommendations for building up collagen.
Vitamin C is on it.
I have to agree, a vegetarian diet is a quick way for me to feel worse.
Treating Intractable Pain Syndrome
Dr. Tennant wrote an excellent article on treating Intractable Pain Syndrome:
7 Ways to Treat Intractable Pain Syndrome
Chronic pain is a disease that over-burdens the brain, causing further physical deterioration. The brain and nervous system must be rehabilitated. But how? I can tell you what has worked for me.
The last six months of my life, I have had significant improvements.
I incorporated treatments that happen to be some of what Dr. Tennant recommends.
The summer started off rough.
I had my foot reconstructed. Oops forgot to write about that.
That foot had been hurting for 15+ years. It fell apart because I was favoring my injured knee. I used my foot very poorly. It got weak and fell apart.
Poor foot mechanics cause foot pain and injury.
The same can be said about all of our EDS joints. Let them slump, throw them around without muscle engagement et voilà more pain, followed by damage.
My foot was in trouble. But for so many years my spine pain made me suicidal. I could hardly notice my foot pain. As I got better I did the best I could to care for my problem foot. I slowed down the damage. It was too late to reverse it.
I saw my podiatrists.
I found that orthotics make my feet weaker and then they hurt even more. Note: transitioning out of orthotics can be very painful.
I go barefoot at home and wear shoes that don’t correct because all they do is prevent muscles from working. That helped a lot. Shoes are way too overbuilt and corrective these days.
I tried several physical therapists for my feet. Some of it was useful. Some of it did nothing.
Because of my fall in 2019, the foot was finally bad enough to benefit from surgery. After the repair surgery, the hardware seemed unstable so the surgeon made me non-weight bearing for two months. On top of that I iced it a lot.
Ice makes tendons and ligaments worse, as does immobilization. Tendons and ligaments (as well as bones and cartilage) do not have a direct blood supply. Blood flow nourishes and heals. Restricting it (which ice and immobilization do brilliantly) slows healing and causes further deterioration. I did not know this then.
I should have had the surgeon fix the hardware immediately so I could start walking.
Instead, my pre-exisiting foot injuries got worse. Oh well.
Hey, that may be a good reason to skip the (permanent and extreme) option of immobilization by surgical joint fusion. What’s going to happen the health of the joint you fuse, and all the joints limited by the neighboring fusion? Nothing good, in my opinion. Healthy range of motion and strength (using my joints well, with muscle support) keep me out of pain.
I don’t do well with surgery.
I squirm. I flail limbs about. I wake up. Drugs aren’t strong enough for my post-surgery pain. Surgery is a nightmare for me, another reason I rail against it. But some people like it. It offers hope (and drama and attention and pain medication). People know what to say to you after surgery. Get well soon! They don’t know what to say when you are chronically ill and in agony. What’s wrong with you, weirdo?
I had been waiting for the day my foot would be bad enough to benefit from surgery, while hoping it would not come. Seemed like I was getting there. And, I was so bored during quarantine. So why not get my foot overhauled when I was getting the hardware from my break removed?
That big surgery I had in 2020 was so painful. I instantly regretted it. Oh well. It’s feeling better now. We’ll see how it does in the long run.
I hope I get good foot function for the rest of my life.
I hope this is the only repair I ever have on it.
I got many opinions on surgeries over the years. I skipped all the creative suggestions and waited. Then I got something very standard and routine. I hope I chose wisely.
Even so, overall, I am doing better.
Between that surgery and the end of 2020, I got 12 low dose ketamine infusions.
I started on testosterone (right now I’m injecting 15 mg once per week), which is great. Now I understand the patriarchy. Testosterone makes you feel good. Note: my testosterone labs are not low. I’m doing this to maintain my bone strength, build muscle and feel better.
I went back to school, a strenuous intellectual challenge.
I feel smarter, less depressed and less anxious.
Even though school was so stressful and I was miserable being at home on Zoom and studying all the time, I feel mentally better. Isn’t that funny?
Not that I would have described myself as feeling depressed or anxious or stupid. Sometimes you don’t know you have something until it’s gone.
Over and over again, I have found intense brain activity does something powerful for my strong tendency to have brain fog and fatigue. It reverses it. Must get out there and struggle to learn!
If you take anything from my story
Let it be that I push myself and I succeed because of the support from C shots.
I tried just as hard without them, but all it led to was burn out and more disability. Or maybe that was just the course of progression of EDS.
Dr. Tennant’s EDS Evaluation
Here is Dr. Tennant’s Ehlers-Danlos diagnosis self-checklist.
I love it!
It is extremely focused on symptoms. That makes it highly useful.
School starts Monday.
I am rested and ready.
We spent the break re-organizing everything from top to bottom. Why not, there was nothing better to do. The day-after-day approach made for very effective clean out. It feels nice in here, you know? With all the junk and old stuff gone.
And sweet Mr. Pennington converted my desk to a sit-stand. Isn’t that lovely. My spine got very angry about the sitting and sitting and sitting and more sitting.
Very soon I’ll have hundreds of thousands of words to read and lots of writing to do. I’m scared. But it’s better than being bored. I’m learning to enjoy it. When we get back to life, I will have more options for the future, with my fancy degree.
I had been wanting to go back to school, but I never would have. I liked working and being out so much I did not want to be at home studying. Being stuck at home is f*cking agony as the whole world knows now.
It’s going to be a long year with a lot of isolation.
It sounds like vaccines won’t be widely available until next fall.
In any case . . .