Reprinted with the kind permission of Cort Johnson and Health Rising.
Vitamin D3 has become a big deal in the past couple of years, but the findings in fibromyalgia have not been particularly promising. Several fibromyalgia studies have not found evidence of low Vitamin D3 (calcifediol) levels in fibromyalgia. Noting,though, that other studies suggest low vitamin D3 levels are associated with increased pain, and that some studies suggest that increasing D3 may help with pain and other symptoms found in FM, these researchers took another look.
If they were successful they would begin to document a relatively cheap and easy way to help with pain for people with fibromyalgia.
A Look at Vitamin D3
Because humans can synthesize D3 from sunlight, it’s not regarded as an ‘essential nutrient’; i.e. one that needs to be ingested. (Sunblock, by the way, dramatically reduces vitamin D uptake through the skin.) Many claims have been made for D3?s affects on cancer and other disorders, the vast majority of which have not been proven. An IOM overview of D3?s effects stated, “Outcomes related to cancer, cardiovascular disease and hypertension,diabetes and metabolic syndrome, falls and physical performance, immune functioning and autoimmune disorders, infections, neuropsychological functioning, and preeclampsia could not be linked reliably with calcium or vitamin D intake and were often conflicting.” (from Wikipedia)
A recent review article, however, proposed that stress- associated reductions of D3 in chronic fatigue syndrome and autoimmune disorders could result in persistent infections, chronic inflammation and fatigue. Earlier the author (Hoak) proposed that a number of immune and oxidative stress issues in ME/CFS (persistent NF-?B activation, augmented nitrosative-oxidative stress, redox imbalance, chronic inflammation, and concomitant fatigue) could be associated with reduced vitamin D levels. A large 2010 study finding low D3 levels were associated with musculoskeletal pain in men implicated pain.
While no one appears to think vitamin D is a cure for fibromyalgia or chronic fatigue syndrome, many practitioners appear to recommend trying it. Dr. Lapp finds that almost all his ME/CFS and FM patients are low in vitamin D and puts it in his recommended supplements. He recommends 2,000 IU a day.
In the most rigorous D3 fibromyalgia study yet done, these Austrian researchers took FM patients with low blood calcifedol (D3) levels (<32 ng/ml), raised their blood D3 levels to the normal range (between 32 and 48 ng/ml) for a certain amount of time (20 weeks), and then determined if their pain (visual analog scale) or anxiety or other symptoms improved.
“In addition to known therapies, oral substitution of vitamin D may be regarded as a relatively safe and economical treatment for patients with FMS. Vitamin D levels should be monitored regularly in these patients, especially in the winter season, and increased appropriately.” Authors
The study was quite small, but the fact that 70 percent of the fibromyalgia patients had below normal levels of plasma D3 suggested low D3 levels may be common. D3 levels may be low in most people, healthy or unhealthy, but a large 2009 survey found “moderately to severely suboptimal” vitamin D levels in people with chronic fatigue syndrome in the UK. Their D3 levels were much lower than found in the general population.
No improvements were seen in fatigue, fibromyalgia impact score, anxiety, somatization or mental health (SF-36), but significant improvements were seen in the main outcome of the study, pain (visual analog scale), and in ‘physical role functioning’ (SF-36). (I believe physical role refers to the degree to which a person believes physical problems prevent them from functioning normally. ). The fact that the highest reductions in pain were associated with the highest blood D3 levels suggested that the D3 was indeed reducing pain.
The fibro patients were not pain-free by any means; the authors characterized the reduction in pain on the Visual Analog Scale (pain) (20 points on a 0-100) as being ‘relatively low. (A 20 point reduction could easily, however, mean a 25% or more reduction in pain.)
They believe that larger D3 dosing could further reduce pain and pointed out that they’d intentionally chosen to max out blood D3 levels at a lower level.
Reduced D3 levels in the winter when the participants were presumably spending less time outdoors suggested that was a particularly good time to take (and perhaps increase) D3. The fact that after discontinuing D3 the patients blood D3 levels dropped to baseline indicated the drug needs to be taken continuously.
Noting that the current ‘optimal’ D3 blood levels are set to prevent rickets, the authors suggested it may be set too low …something Adrienne Dellwo of About.com’s Fibromyalgia and Chronic Fatigue Syndrome site definitely has something to say about. Her low blood D3 levels after supplementation suggested to her rheumatologist that she needed much more D3 than ‘normal.’ A temporary D3 megadose that brought her blood levels up to 60 ng/ml resulted, for the first time, in significant reductions in pain. Her rheumatologist noted that most of her pain patients don’t see significant relief until their blood D3 levels get to over 60 ng/ml.
Adrienne now takes 5,000 IU D3 a day to reduce her pain, a bit higher level than the maximum tolerable amount recommended by the United States Institute of Medicine. (Note that recommendation reflects the lack of information available on the effects of those doses and applies to ‘nearly all persons in the general population”; i.e. it reflects tolerability across a large population and may not apply to people with chronic illnesses. (Adrienne believes the stresses imposed by her chronic illness increase her need for Vitamin D.)
The IOM’s Tolerable Upper Intake Levels:
0–6 months of age: 1,000 IU (25 µg/day)
6–12 months of age: 1,500 IU (37.5 µg/day)
1–3 years of age: 2,500 IU (62.5 µg/day)
4–8 years of age: 3,000 IU (75 µg/day)
9–71+ years of age: 4,000 IU (100 µg/day)
Pregnant/lactating: 4,000 IU (100 µg/day)
Vitamin D appears to present a mostly safe and cheap way to reduce pain (and possibly other symptoms) for some people with fibromyalgia and chronic fatigue syndrome. Larger studies are needed to identify optimal doses and to validate and enlarge on this studies findings.
We should know more about the effects of Vit D on ME/CFS soon. ME Research UK funded a study, “The effects of oral vitamin D supplementation on cardiovascular disease risk in patients with ME/CFS” that should wrap up this year. (Thanks to Tom Kindlon for the info.)
If you’ve tried Vitamin D what are your experiences?
Source: Wepner F, et al. “Effects of vitamin D on patients with fibromyalgia syndrome: A randomized placebo-controlled trial.” Pain. 2014 Feb;155(2):261-8.
About the Author: Cort Johnson has had ME/CFS for over 30 years. The founder of Phoenix Rising and Health Rising, Cort has contributed hundreds of blogs on chronic fatigue syndrome, fibromyalgia and their allied disorders over the past 10 years. Find more of Cort’s and other bloggers’ work at Health Rising.