Is Vitamin D Making Me Feel Better?

This is the story of how I have turned into the crazy lady constantly telling everyone I meet to get their vitamin D level tested.

The thing about the vitamin D is that it could either be the cure I’ve been searching for, or have absolutely nothing to do with why I’ve been feeling better since about July. Either way though, I am feeling better these days.

Back in May, I went to visit a local weight loss clinic to try and lose some of the 60 lbs. I’ve gained since getting sick. While I was there they ran some routine blood work. And it turns out my vitamin D was low. Not like, “Oh, it’s just a little low, you should probably take a supplement” low.

My level was 6 ng/ml. It was literally the lowest the doctor at the weight loss clinic had ever seen.

To put it in perspective, the Vitamin D Council says it’s best to be between 40-80 ng/ml, while the University of Wisconsin recommends being between 30-80 ng/ml.

I had tested low before, like 19 ng/ml, but it was years before I suddenly woke up feeling like someone was stabbing me in the ribs. And I honestly don’t remember the doctor at the time impressing on me that it was any sort of an issue. I just figured it was like needing an oil change every 3,000 miles. Sure that’s the ideal, but your car isn’t going to just shut off if you wait until 5,000 miles.

So I told my primary care doctor about the results, and he and the weight loss doctor decided to put me on prescription-strength 50,000 IU vitamin D for three months, followed by a daily dose of 4,000 IU after that.

When I got home from my appointment, I looked through all my medical records — from Loyola University, the Mayo Clinic and the University of Wisconsin-Madison — and realized that not once had anyone thought to test my vitamin D.

I have literally had more than 35 blood tests, a handful of urine tests, and a more imaging than is probably healthy, but none of them were for vitamin D!

It turns out vitamin D is pretty important though, and has been shown to have direct links to chronic pain. It’s also not actually a vitamin, so much as a hormone. There’s all sorts of research on how low vitamin D can cause chronic pain, even specifically rib pain, which is what I have.

A recent study in The Pain Physician journal shows that, “Vitamin D, a hormone precursor essential for maintaining homeostasis of the musculoskeletal system, has long been proposed as an associated factor in CWP (chronic widespread pain). The most severe type of hypovitaminosis D, osteomalacia, features generalized body pain, especially in the shoulder, rib cage, and lumbar and pelvic regions.”

And another study from the American Academy of of Pain Medicine showed that, “The prevalence and clinical correlates identified in this pilot study provide the basis for the assertion that vitamin D inadequacy may represent an under-recognized source of nociception and impaired neuromuscular functioning among patients with chronic pain.”

In other words, if low levels aren’t the cause, not having enough vitamin D can make chronic pain more severe. And, low Vitamin D can also make pain medications less effective.

According to an article on the Mayo Clinic website, “patients who required narcotic pain medication, and who also had inadequate levels of vitamin D, were taking much higher doses of pain medication — nearly twice as much — as those who had adequate levels.”

So I was cautiously optimistic that getting my vitamin D levels back up could at the very least make my pain medications more effective.

But for the first few months, I didn’t really feel much different. I only told a few people about the vitamin D because constantly talking about possible cures is exhausting — everyone wants it to work so much, and then when it doesn’t you feel like you have personally failed at something.

So I only told my mom, my boyfriend at the time, and my best friend. My then-boyfriend was hoping for a miracle by day two. But alas, nothing. My best friend was hoping for a miracle by month two. But alas, nothing. And my mom, who I live with, wasn’t really putting her hope in it all. She had seen too many things not work.

But then, in July, I started noticing things. Like little things. Like I could go for a walk and not die afterward. And then, in August, I cleaned the freaking bathroom! Seriously, I did the floors, washed the mirrors and scrubbed the tub, all without ending up in the hospital!! And by September, I was even able to make the four-hour round trip trek to work without having to spend the entire next day recovering.

Slowly, but surely, I have started feeling better. I mean, I’m not cured. And I’m not holding my breath that I ever will be. I’m also completely aware of the fact that I could backslide at any moment.

And, I still take morphine on a daily basis, for now anyway. But I have literally gone off almost all my other meds, including the sleeping pill amitriptyline and the nerve pain medication Cymbalta. As for the hydrocodone, I’m down to like one or two pills a week at the most. And sometimes, I can go the whole week without taking any at all — which is pretty much a miracle of God if there ever was one.

There’s also been some weight loss. I honestly never went back to the weight loss clinic because they wanted to put me on a weight loss drug, and over the last couple years I’ve come to a place where I just don’t want to be on any drugs unless I have to.

Even so though, feeling better has meant that I’ve been able to walk three to five miles about six days a week all summer, and I’m excited to report that since May I’ve lost 30 pounds! WHAT?

I had a visit with my amazing doctor last week, and we talked about whether or not the vitamin D deserved any credit for my newfound ability to shower almost every single day.

When I showed him that I had a whole bottle of hydrocodone left over — I honestly used to run out of the drug a week early each month — he literally said, “Congratulations!”

He tested my vitamin D, and I’m happy to report that I’m now at 35 ng/mL — a much healthier level than six. As my doctor remarked on the top of the lab results, “Your vitamin D level looks good. You can safely keep taking your current dose of vitamin D supplements.”

When we talked about it during the appointment, he told me that the vitamin D could be part of why I’m feeling better, or it could be that the nerve that they think was causing the pain had shifted somehow. Or it could be something else all together. Maybe it’s the placebo effect, or maybe it’s all those Taco Bell Cheesy Gordita Crunches I eat every other day that have something magical in them.

So yeah, I don’t know if the vitamin D is the reason I’m feeling better or how long-term this could be, but honestly, I don’t care. I’m just happy that I can clean the bathroom again.

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  1. Wow! My oncologist must have this one down. He was the only doctor who tested and found me extremely low on vitamin D and put me on high dose for 2 weeks and then has me taking 2000 UI daily.

  2. Very interesting! I ran across an article of yours while googling intercostal nerve ablation at Mayo Clinic. I have a rather unique medical history and will be going to Mayo in Jan to sort it out. Primary objective is to meet with the genetics department to determine if I have a connective tissue disorder but that is somewhat unrelated to how I found a fellow sufferer of right sided rib pain.

    I’ve had stabbing pain under my right rib for over 4 years, intensified by exercise. Years of testing in WI and IL came up empty (GI doc said no GI cause, must be muscular, chiro said it’s not muscular, must have a different cause). A trip to Cleveland Clinic in 2016, a CT angiogram and dopplar ultrasound showed a small compression on the celiac trunk and I was diagnosed with MALS (median arcuate ligament syndrome). The vascular surgeon was not 100% confident that the compression could cause the pain but thought it was possible. I declined surgery as MALS surgery is a difficult recovery and the success rate with atypical symptoms like mine was low.

    I consulted with another MALS expert in Chicago earlier this year who wanted me to have a celiac nerve ablation. The interventional radiologist who was asked to do the ablation, disagreed with the diagnosis of MALS and believes I have intercostal neuralgia. That was the first time I heard that term. He tested his theory by doing a series of nerve blocks with Marcaine and my pain was GONE. It came back after 6 hrs but it confirmed his suspicions. Around the same time, my right lung collapsed and wouldn’t heal. Thoracic surgeon went in to repair it and said I had a bleb the size of a tangerine on the back side of my middle lobe. She said it would absolutely cause back/rib pain. I’m now 2 months post op from lung surgery and still have some residual rib pain that I’m looking to treat aggressively. Hence the search for intercostal nerve ablation landing me here.

    So, after reading about your experience, a few thoughts come to mind.

    1) I need to start taking vit D. Mine is 23 so not severely low but still out of range. I’m so glad it’s helping your pain!

    2) During your years of testing and doctors appts, did you ever have a chest CT (specifically for lungs, not ribs or spine) and/or consultation with a pulmonologist or thoracic surgeon to look for blebs? Most doctors would never even think to look for a bleb as a cause of pain, as they are a rare finding, but considering how innervated the plueral cavity is, they can indeed cause a great deal of pain and are not typically found until they rupture, causing the lung to collapse.

    3) I’m going to assume that in addition to oral pain meds, you’ve tried lidocaine patches? Intercostal nerve blocks? If so, what agent was used and if it worked, for how long? Were ablations ever considered or tried?

    Sorry for the length. You are one of the very few people I’ve “met” with similar pain as mine. Hoping we can learn from each other! Please email me or Katie Nunez on Facebook

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