Osteoporosis
You could have blown me over with a feather. Osteoporosis and fibromyalgia? What in the world could a chronic pain condition have in common with a low bone density condition? Quite a bit, it turns out.
Osteoporosis refers to reduced bone density, which can translate to weakened and brittle bones, an increased risk of fractures (including the dreaded hip fracture), and a stooped posture. It’s not an uncommon condition at all. According to the CDC, almost 20% of women and 4% of men over the age of 50 have osteoporosis. It’s particularly prevalent in women after menopause as their estrogen levels drop.
The risk of osteoporosis increases greatly after menopause. (From Laboratoires Servier – Wikimedia Commons).
According to the American Family Physician website, one-half of women will experience an osteoporotic fracture in their lifetime. Its risk also increases in men when they age as their testosterone levels drop. At least 40% of women and 15-30% of men will sustain one or more fragility fractures as they age.
Because a fracture is typically the first sign that osteoporosis is present, it’s important to be tested for it as we get older. The American College of Obstetricians and Gynecologists (ACOG) recommends bone density screening for all postmenopausal women 65 years and older. Younger people with an estimated increased fracture risk (https://www.sheffield.ac.uk/FRAX/tool.aspx?country=9) should also get screened.
The Fibromyalgia Connection
In osteoporosis the bone becomes less dense…and more brittle.
How osteoporosis became a thing in fibromyalgia (and why it’s never been assessed in its sister disease, ME/CFS) isn’t clear, but what is clear is that researchers started looking into it early on. The first FM osteoporosis study showed up in 1990, and over time was followed by 20 related studies.
The early results were mixed with some studies finding no evidence of low bone density. A 2016 and two 2017 metanalyses concluded, however, that bone density was decreased in FM.
A 2019 study linked low bone density with increased pain sensitivity in FM. That study was followed by an interesting Spanish study which found that following a Mediterranean diet and having a “lean mass” might help improve bone health.
The fact that handgrip strength was positively correlated with bone density in another study suggested that strengthening exercises might help. Just last year, a large case-control study (n=85,000!) found a significant correlation between FM and osteoporosis (p<.001).
Osteoporosis in Fibromyalgia – Possible Causes
A lack of exercise, reduced exposure to sunlight, reduced vitamin D levels, reduced growth hormone levels, the use of steroids, antidepressants, bisphonates, and hormone replacement therapy have all been suggested to contribute to the increased risk of osteoporosis.
Because sex hormone (estrogen, testosterone) levels may impact the risk of osteoporosis and can play a role in chronic pain (and may be altered in FM and ME/CFS), one wonders if they could play a role as well. On that note, one study found that postmenopausal hormone replacement therapy (1,2mg/g transdermal estradiol, 100 mg micronized natural progesterone oral/daily) improved sleep and quality of life in FM.
One research group proposed that FM could be a form of climacteric syndrome that is caused by a general diminishment of ovarian sex hormones over time. They proposed using hormone replacement therapies to reduce inflammation and increase estrogen in FM.
Given the findings that gut dysbiosis may contribute to osteoporosis, gut flora enhancement must be considered as well.
Chronic Fatigue Syndrome (ME/CFS) and Long COVID
One has to wonder, given the increased problems with exercise in ME/CFS, what is going on with bone health there. Another potential connection concerns ACE-2 dysregulation – something that has been linked to osteoporosis before.
Eight years ago, in her 20-part series on her journey with ME/CFS, Carol Lefelt described her struggle with the decision to take powerful drugs to treat her severe osteoporosis.
The SARS-CoV-2 virus that triggers long COVID is apparently able to affect bone health and “cause substantial bone loss”. One review recommended that “robust studies” be done to understand the long-term effects of the virus on bone health. Another asserted that the studies thus far indicated that a “strong disruption of bone health in post-COVID-19 patients” may be occurring.
Most interestingly, the review proposed that gut dysbiosis and leaky gut in long COVID may be impairing bone health (!). The same bacterial species that have popped up in ME/CFS studies (Faecalibacterium prausnitzii and butyrate producers) appear to be relevant to bone health in long COVID. In fact, the authors stated that “emerging evidence suggests that dysbiosis of GM is one of the major causative factors for the onset and progression of osteoporosis.”
Exercise?
Many factors can contribute to osteoporosis (anorexia nervosa, diabetes mellitus types 1 and 2, diminished ovarian reserve or primary ovarian insufficiency, gastric bypass, HIV, hyperparathyroidism, hypocalcemia, premature menopause, renal impairment, rheumatoid arthritis, Turner syndrome, vitamin D deficiency), most of which aren’t typically associated with FM. Ditto with medications (i.e., antiepileptics, antiretrovirals, aromatase inhibitors, chemotherapy, depot medroxyprogesterone acetate, glucocorticoids, gonadotropin-releasing hormone agonists or antagonists, heparin).
One risk factor, in particular, though, stands out in FM, ME/CFS, and long COVID – lack of exercise. A recent study found that high-intensity, high-impact exercise was the most effective in osteoporosis. While studies typically employ much higher levels of exercise (30-60 minutes several times a week) than people with ME/CFS can tolerate, some people with FM should be able to tolerate them.
Plus, Harvard Health recommends that people diagnosed with osteoporosis start very slowly – just two or three bicep curls – plus some gentle weight-bearing exercises a week and work up to a couple of repetitions a week.
While “high-intensity, high-impact” exercise might sound daunting, it might be the kind of short but intense exertion that some people with ME/CFS/FM can tolerate. Short periods of exercise that don’t stress the aerobic energy production system are probably best for ME/CFS in particular.
Resistance training using elastic bands is an easily controlled type of exercise that might be slowly increased over time in those who can tolerate it. I’ve recently found them an easy way to gently work out a variety of muscles and get a little muscle tone back.
Resistance training causes the muscles to pull on the bones, thus stimulating bone growth. Small weights are another possibility. Cardiovascular exercises such as walking are helpful but are too much for many people with ME/CFS and some with FM. Note that Peter Rowe has found that a stretching regimen that elongates the tendons can be helpful in removing the restrictions that inhibit exercise in these diseases.
The Bone Coach
I had forgotten about the osteoporosis connection in FM until I saw that Kevin Ellis, aka the “Bone Coach”, was giving a presentation in Dr. Murphree’s “Freedom from Fibromyalgia” Online Summit.
Diagnosed with osteoporosis at the tender age of 31, and suffering from malabsorption and weight loss, Kevin Ellis researched and researched, and eventually developed a program to support better bone health.
I haven’t taken it, but Ellis produced a free “masterclass” program to help people build stronger bones.
You can also watch Kevin interact with Dr. Murphree on the free online Freedom from Fibromyalgia Summit by registering here. I believe his talk is on the 25th
Fibromyalgia, ME/CFS and Long COVID Osteoporosis Poll
My period stopped when I was 38 about 2001. I had premature ovarian failure. I don’t know if it was offered. I dont remember. But, I never took any hormone replacement therapy. Around 2001 or 2002, I got psoriasis and high cholesterol.
I had had a bone density scan, at one point, which showed osteopenia. I never took the prescribed fosamax.
By 2009 I had fibromyalgia. In 2012, I was diagnosed with psoriatic arthritis.
In 2022, this all caught up to me when I broke my tibia. I now, have osteoporosis. I live in pain all the time
Please don’t ignore what your doctor tells you to do!!!
Sue, please don’t beat yourself up too much. My period stopped in 2006 (when I was 44) because of chemotherapy. I, too, was diagnosed with osteopenia. I took the prescribed Fosamax and developed necrosis in my jaw as a side effect of the Fosamax. Without getting technical at all, I have learned that ideally, bone cells are created, but then later destroyed as they get old, which keeps the bones “young,” flexible, strong, and healthy. Apparently, Fosamax works by stopping the destruction of old bone cells. This results in old bone tissue building up, but now it is even older, inflexible, brittle, and prone to break, anyway. The scans look better, but the bone is now weakened and unhealthy. If I had to do it over again, I would have opted out of the Fosamax. The better solution would be to do lots of weight-bearing exercise, but for people with fibromyalgia and psoriatic arthritis (me, too) who cannot exercise at all because of pain, stiffness, exertional fatigue, and postexertional fatigue, that is not possible. I stopped getting bone scans (what good are they if no further treatments are available?). I have to assume that I have developed full-blown osteoporosis after all these years. Unfortunately, there are no easy answers for those of us with both chronic illness and bone loss due to early menopause.
P.S.
Sue,
Because I am a two-time breast cancer survivor, doctors have been unwilling to prescribe bio-identical hormones for me, but perhaps this option might be available to you. It doesn’t hurt to ask!
Wow!!! Bone necrosis!!!! I had no idea of that side effect. It sounds like you’ve had a he’ll of a time. I hope you are doing well and thank you for your kind words
You too!! I’m sorry to hear that
All i know is it hurts like crazy.
Maybe we need to form a group : )
Four people in my family contracted Severe ME in the 80s, myself and three children now grown up. They went on to develope other conditions as the years went by. In 2011 the children were tested with DXA scan for Oseoporosis and all had Osteoporosis. One son was told his bones were worse than a 93 year old and later the consultant said he couldn’t understand the state of his bones even with all his conditions, but of course he was not taking my sons ME into account! I have never been tested but I know I have it as a recent x-ray of my jaw showed very thin bone. We have also found that Osteoporosis is very common in most of our long-time ME friends.
I have all 3 and osteoporosis and osteoarthritis
My first bone density test was at the age of 33 and was normal. Now, two decades later, doctors will not order a bone density scan until the age of 65 because of the CDC. Women generally hit menopause in their 50’s, wouldn’t it make sense to test women before they reach 65 when the damage may be too much to recover from?
I wonder why they’re waiting so long…
Not sure, feels like sexism. If it impacted men more than women, you can bet there wouldn’t be any delay in testing.
You are so right. If a man had some of these pain conditions they would’ve been cured long ago too
Doesn’t feel that way!
I meant doesn’t it feel that way
Likely because she had one scan and it was normal at age 33. If Drs aren’t aware of the covid/me & bone loss connection (which I’m sure they aren’t), and barring any other obvious indicators of a problem, there would be no reason to re-scan until after age 60-65. See my message below on “normal” bone loss.
That’s crazy Kat, never heard of not being able to get a bone scan after menopause. At your age even if you’ve not totally gone thru it I’d think they’d want a baseline at this time.
Oh I’m completely thru menopause but all my docs say insurance won’t pay and they know not to order it. Do other insurance companies pay for a bone density test, anybody?
Yes. Blue Cross and Kaiser. It also pays to shop around, if you do have to pay. I found prices from $150 (yes!) to almost $1500. Grrr. An insurance rep that I met at a party, told me that her company had a policy to deny all claims the first time they’re submitted. So keep trying. Adding some of these statistics might help.
I think that insurance typically pays for Dxa every 2 years (very generally speaking) and not yearly.
They may pay yearly only for patients who have started an osteoporosis therapy and need the dexa results to decide whether or not to continue the osteoporosis medication or not.
Thank you
My insurance, a United medicare Advantage plan, pays for one every 2 years.
Interesting – is that it regardless of age? Thank you.
Not positive but pretty sure it’s after menopause and if there’s a special reason to be watched more closely, I think they will allow every year.
Yes, it would make sense. I’m sorry to hear that you have trouble too
I got sick at age 44; a brain infection that stayed, and got worse (cfs/me, with lots of brain lesions and atrophy). At 47, I had menopause. At 48, they found a severe Vitamin D deficiency; at 50, osteopenia. At 52, osteoporosis. I’m 67 now, and the osteoporosis has progressed, but slowly. I take Vitamin D (2000 IU day, per Harvard study); love resistance bands (use them while reclining or lying on the floor; for arms, legs, shoulders, core); stretch, and walk as much as I can.
While waiting by the microwave, I do exercises. While cooking or doing dishes, I listen to music and dance slowly (lots of arm and leg movements/stretches).
It’s not surprising to see this correlation. If it is frequent in long Covid, that at least might help boost the research.
So insurance didn’t stop you from have a bone density scan before the age of 65?
See my response to your first post.
You are inspiring
Aww, thanks Sue.. I was lucky to have been born with determination, and a body that just keeps coming back. One doc said I’m like the Energizer bunny. Thank you.
At age 34 I had a full-body bone scan for a puzzling medical problem. I’d always been very athletic so wasn’t surprised that the result was “118% of normal – you’ll never have to worry about osteoporosis.” Fast forward 35 years, after 5 years of ME/CFS and a recent MCAS diagnosis and the story was very different: osteopenia. I’m still trying to puzzle out how this happened. Yes, I was in bed for a year with the illness that triggered ME/CFS, but I’ve recovered enough to be somewhat physically active again. Still looking for an explanation….
Oh dear. Before getting sick, I was quite athletic too—running 30-35 8-minute miles per week, tennis team, etc. But after getting sick, I had menopause 3 years later, at 47; osteopenia at 50; osteoporosis at 52. Some docs told me this was “impossible “ (!), but I bet it’s a pretty common story.
Maybe a menopause connection?
You are 69 yo! Bone loss is normal! See my post below. Glad you are your feet again! You can regain some bone density with exercise. 🙂
I was very active and athletic too (competitive varsity volleyball, basketball, track, equestrian along with college scholarship basketball player) until age 30 when I was 1.5 months pregnant. The pregnancy triggered an undiagnosed congenital spinal cord defect that contorted and continues to cause havoc through out my body, nerves, and organs.
I am a 67 yr old male with Fibro (and CFS), and severe osteoporosis. My CFS/Fibro started (or became clinical) at age 30. A bone scan revealed osteopenia about 2 years later. This progressed to osteoporosis within approx 10 years. I have no idea of the cause (or of effective treatment) of the decreasing bone density, but I have always suspected that it is another manifestation of my CFS/Fibro.
That being said, I think that the osteopenia was actually present for a number of years before my CFS/Fibro became clinical (based on experiences of crushed vertebrae during seizures in my 20’s, and back x-rays that showed bones as greyish (less dense) instead of white). The first bone scan that I ever had (at age 32 or so, after developing “clinical” CFS/Fibro at age 30) showed osteopenia. That is to say, I am convinced that I had numerous clinical or sub-clinical manifestations (such as decreased bone density) of my CFS/Fibro – many years before my fatigue (and other classic overt symptoms) became clinical at age 30.
PS. I am actually not sure if I have CFS or Fibro (or neither or both), but I have all of the classic common symptoms of both. If I understand correctly, these disease names are only descriptions of common symptom clusters anyway, since the names do not reflect the (still unknown) cause(s). Thus, from my perspective, for practical purposes, I perceive Fibro to be CFS + pain. Note that for the first few years of my (clinical) illness I had fatigue (plus many other symptoms) without pain (CFS?), but the pain slowly commenced and progressed in addition to the fatigue and other symptoms (Fibro?).
Thanks for the great report Cort.
Hmm there goes my menopause theory😊
Not totally. Hormones do play a part! 🙂
Ugh. Over 40 and diagnosed with migraine auras (usually aura without head pain).
I was told to discontinue any birth control that contains estrogen, because I have a higher stroke risk.
That recommendation is based off of outdated research that was done when birth control pills had much higher estrogen contents than they do now.
I do think estrogen affects migraines tho. I had more optical migraines when on the combo birth control pill.
On Depo provera, I began having what I was told was probably cochlear migraines. I briefly lose my hearing (completely) in one ear, followed by brief tinnitus and then a return to normal function.
I noticed the hearing loss because I sat next to an air conditioning/heating unit that forcefully blew air… and I had thought it had turned off… until I turned my head and picked up the sound with my other ear. Episodes are always brief (thankfully). Before depo provera, I only had brief periods of muffled hearing and a feeling of ear pressure that I blamed on allergies or possible eustachian tube dysfunction (I declined ear tunes as a child).
FM and migraines are common comorbidities, so I feel like estrogen replacement therapy will only be an option for a subset of FM sufferers who never had migraine with aura.
I wish they re-evaluated the research that was done based on old birth control formulations. I feel like I would prefer to try HRT, as I am now possibly perimenopausal at age 43 (hot flashes, mood changes and omg fatigue).
They make super confident hormone therapy decisions based on potentially irrelevant data. It makes me pretty livid.
Warning!!!!!
My Dentist just told me last week that if you want to take any of these Osteoporosis Medications, you have to have your teeth in perfect condition.
He said, if you don’t have your teeth, mouth, gums perfect, you can get Jaw injuries, Fractures all the way to the Jaw bone death (Necrosis). He said, thankfully Doctors are starting to warn about this. However, my Doctor wasn’t aware of this at all and talked to me about taking one of those drugs, while I had a very serious abccess from my tooth!!!
I’m 61 and have had 3 compression fractures in the past 4 years. They diagnosed me with severe Osteoporosis.
Great report, thanks Cort. I confess my initial thought was “oh great – something else to worry about.” But I would much rather know what to expect in reality. I’m 47 now; I got COVID at 44. I have LC, ME/CFS, and docs now suspect fibromyalgia. I’ve been doing light yoga intended for ME/CFS (I’ll include the link if anyone’s interested; the instructor has ME/CFS herself and all classes include modifications tailored to your spoon level). I somehow tweaked my right shoulder in that class and I’ve been trying to rehab it at home with resistance bands as per orthopedist (since PT sent me into a wicked POTS flare). Anyway, I’ve noticed that in spite of injections and these stretches/exercises, it’s just not healing.
I was an athlete up until age 44 – collective volleyball player, hiker, cardio, weight training. I think the condition my bones and muscles were in before getting sick bought me two years with not much pain or problems healing. But lately I’ve had roving pains as well as prolonged healing from dental work and any small scrapes or injuries I’ve had (including punch biopsy for small fiber neuropathy). I’m not hyper mobile in any way, but I feel I’m starting to have issues with my bones, connective tissues, and muscles. From what I’ve read, collagen supplements haven’t been proven effective though I’ve tried them.
I am going to take heed here and keep up with the yoga, stretching, and supine resistance band work while I can. Thank you to all who have come before me who have commented here. Know that your comments are helping at least one person, and likely many more.
Oops – forgot the link to the spoonie yoga:
https://www.nourishtherapeuticyoga.com/
This website has helped me immensely more than once! Thanks for the yoga link. Those of us border osteoporosis need all the help we can get. 🙂
Thank you for this, Cort!
As a quick aside related to ME/CFS & Long COVID, did you see by chance that Minnesota Legislature just passed state funding for this patient community (they are just waiting for the Governor signature now)?
Just wanted to share here, if not.
From the Minneapolis Star Tribune: https://www.startribune.com/minnesota-lawmakers-set-to-send-mayo-friendly-health-budget-nurse-staffing-bills-to-governor/600276887/?refresh=true
‘The HHS bill includes research into long COVID and support for people suffering from the post-pandemic condition.’
The HHS bill that has passed to the Governor’s desk is providing dedicated funding measures set aside for Long COVID & related conditions, in which the language names ME/CFS, Dysautonomia & POTS in the bill.
This is the bill text (you can search ME/CFS or Long COVID): https://www.revisor.mn.gov/bills/text.php?number=SF2995&version=latest&session=ls93&session_year=2023&session_number=0
This is the budget spreadsheet: https://www.house.mn.gov/comm/docs/EuPosUxQM0mJhGZyc4gz_A.pdf?fbclid=IwAR2YrGkgfVTIkGY8fwsQZolxkwLI6z6VEnvdxEw5bjPFORZw-pOQz-z5sMo
Per the budget spreadsheet, it looks like the Minnesota Department of Health will be allotted $3.1M per year for the next 4 fiscal years to help address the laid out gaps in the bill for this patient population.
Do you know if this type of funding allocation has been given before for ME/CFS (or Long COVID) to a State Health Department? Feels like a fairly big deal / win for the community (even if not federally, but at least from a state level).
Just wanted to highlight today.
Thank you
That’s awesome! Pray the governor signs it!
Did not realize the connection between these illnesses and bone loss but not surprised. Have had both ME/CFS and FM since 1986. Developed osteopenia which advanced to Osteoporosis over the years. Tried Fosamax and also Prolia but couldn’t tolerate either because of side effects. Can’t take hormone replacement therapy because of ER/PR positive breast cancer and mastectomy in 2013. Vitamin D and resistance bands are the only things tolerable right now. Fully vaccinated but took a year to get back to baseline after second vaccine and then, six months later in August of 2022, got COVID and still haven’t returned to baseline yet. Still waiting for a miracle for all of us! Cort, you continue to remind us that many physicians and researchers have spent much of their careers looking for treatments and a cure for us so we must never, ever, give up hope. Thank you for continuing to offer hope.
I’ve had ME/CFS for over 50 years and am 10 years postmenopausal with no hormone replacement therapy. I use latex-free tubing for strength training and bounce on a balance ball every day. My bone density is still that of a 30-year-old, so it does not take strenuous exercise to maintain density, just regular gentle stress on the bones.
Oops! You just this theory out of the water. 😉 But like everything else I’m sure it has a very individual component to it, including genetics, severity, original cause, amount of exercise (congrats!), attitude and determination. You are an inspiration! Thanks!
Cort, would you do a similar survey re WBC count? Mine is always low normal or even low, currently 3.5 and 4 is lowest normal. My brother has fibro and his also tends low. Would be curious if this trends with others.
Betsy – I have had fibro for 20 years and have not had low WBC counts, but possible that it is some kind of manifestation of fibro in a subset of people. It would be interesting to know if you have been tested or diagnosed with RA or lupus as those are more associated with low WBC (leukopenia).
Thanks Emily, I’m quite sure I don’t have RA or Lupus, but Dr. Teitelbaum said that he sees this in some of his patients, so wondered if Cort’s readers were similar. Hopefully he’ll see this and do one, but probably should not have inserted an off topic matter.
I have had Fibro since 2007. My bloodwork notes say that the ideal functional range for WBC is 5-8, and my bloodwork has always been in that range.
>8 indicates an underlying acute infection
<5 indicates immune suppression or post viral syndrome…
Something for you to research, anyway!
Hi Kristin, I’m not too worried as it was 3.4 a couple years ago, then for a couple years it was low but within normal limits, now back to 3.5. My lab says 4 is low normal. I rarely get acute illnesses and haven’t yet had COVID, weird. If a low count can indicate a post viral syndrome you’d think those with CFS would tend to run low.
If you are over 50 and female you have a 50/50 chance of being “diagnosed” with osteopenia. That’s because they are comparing your bone density with the average 30 year old! If they would compare people with their own age group the numbers would be significantly lower, (Called a Z test), because bone loss is a normal part of aging. Here’s a good explanation. https://americanbonehealth.org/bone-density/understanding-the-bone-density-t-score-and-z-score/ I’m assuming that is part of the reason for the issues with scanning, insurance etc. Osteopenia is a normal part of aging and may never lead to osteoporosis. Big pharma would love to sell drugs to all the 50yo women who have osteopenia (even though they are perfectly normal).
Personally, I seemed to have rapidly developed osteoporosis and then osteoporosis in my early 30s. Immediately after starting major dietary exclusions (histamine, dairy, yeast, egg). Which gave me better cognitive energy, but also PEM for the first time, a year later. When I had to stop playing racket sports.
NHS Rhematologist’s tests found *high* Vit-D and testosterone, normal PTH, calcium, magnesium. Possibly low phosphate excretion (24h urine) but they swore there is no lower limit for that. Regional specialist had no input on diet or nutrition. Just left it, given DEXA result appeared to stabilise.
After a recent study, I’ve also come to suspect melatonin might have caused a distinctive distortion of my gut bacteria (high verrucomicrobia) that was associated (in a mouse model) with worsened inflammatory gut issues.
I’m so sorry to hear that! check this out if you haven’t already. https://www.healthrising.org/blog/2021/06/02/fibromyalgia-chronic-fatigue-syndrome-benefit-high-dose-thiamine/ I worked up gradually over a week to 300mg of B1 & B2 and 48 hrs later my PEM pain was gone and the ME/CFS fatigue was gone as well. I now take 200mg/ day and if I stop the fatigue starts coming back within 3-4 days. I’d suggest trying it. It could change your life for the better! I also took Solgar Amino acids before exercise which helped a lot and now I just take one a day with the B1 & B2. I’m not running marathons but I’m on my feet more than half the day. Good luck to you. You need to figure this out for yourself because most Drs are clueless.
Thanks. I’ve tried all the B vits a few times, over the last decade or so. Aside from B12, they don’t seem to do me any favours. In particular, titrating up B1 (HCl), a couple years back, messed me up: https://forums.phoenixrising.me/threads/high-dose-vitamin-b1-thiamine.34387/post-2375713
Looking to target them via repeat nutritional testing, in future. Aminos were a nuanced issue, but no lasting positive effect. Good luck with your self-treatment.
Sorry that didn’t work for you. My other suggestion to everyone is to get genetic testing done through DiagnosticSolutions Lab.com, called Genomic Insight. You’ll have to find a Dr to order it for you and choose your focus. Like Energy, Inflammation, Cardiometabolic for Me/CFS. I found several issues that I could address with diet and several that indicate I am at high risk for things I can’t control. The results are comprehensive with lists of supplements to use or avoid and drug interaction warnings for specific genetic profiles. Best wishes!
I’ve had ME for over 30 yrs and osteoporosis for almost as long. My primary physician (who doesn’t believe in ME) is not happy with me because I opted out of Fosamax. I take Vit D & K and eat eggshells. Last dexa scan showed increased bone density.
Helpful info at: https://www.betterbones.com/
and
https://pubmed.ncbi.nlm.nih.gov/15018022/
Forget the eggshells. God only knows what’s in them, or what the chooks who produced them were fed, or how they were kept. Eggshells are sure to contain microtraces of chook faeces. Not good for your gut or general health.
Take a respectable calcium tablet or two instead.
Use eggshell plant around plants to deter snails. And lavender loves lime – use the eggshells around those.
We’ll have to agree to disagree on this one. Eggshells are fine after being boiled, baked and ground up. They are much closer to the composition of bones than plain calcium or even calcium with magnesium, boron, etc. Research shows they are better for osteoporosis than plain calcium, and that has been my experience as well. Plus you avoid all the additives, which I generally can not tolerate.
Osteoporosis is also apparently a common comorbid condition in EDS, so given the massive crossover, it’s not surprising. This study recently from Denmark: https://pubmed.ncbi.nlm.nih.gov/32412854/ Wonder if the faulty connective tissue on the surface of bone might have something to do with it?
Thanks for sharing this. I also have hEDS. My mother suffers from osteoporosis beginning after menopause and has had multiple spinal fractures due to this. I would think insurance would want me to get scanned sooner than later. Ugh.
yes. We are in Australia and you become eligible for a free bone scan when you turn 70. I asked for my first scan at the age of 44 because of having ME/EDS and POTS diagnosis and being on more severe end. I showed up with osteopenia then and now, at age 52, my GP was alarmed after I asked for another bone scan and showed up with very severe osteoporosis. I was relieved to learn there are excellent treatments for it that can reverse the problem as long as you stay on treatment for life. My endocrinologist was amazed that I was so thrilled that the treatment only involved 2 injections a year with zero side effects. She said most of her patients are shocked at having to be on treatment for life. She knew nothing about EDS and wasn’t interested in seeing the research paper I put above, and I tried to explain that having a chronic illness with virtually no treatments that worked, this was like having a dream comorbidity…one that you can treat and the treatment is effective. Anyway, I’d encourage anyone with our conditions to get a bone scan, no matter what your age.
I think it’s the eds connection.
Lack of collagen.
Osteoporosis is also linked to heart disease.
We drew the short store. I look forward to regenerative medicine helping out
First diagnostic test for long Covid available in Australia.
https://www.news-medical.net/news/20230522/First-diagnostic-test-for-long-COVID-is-available-to-patients-across-Australia.aspx
That article has been pulled citing a need for a fact check. Interesting…
Here is another article which I presume is about the same test:
https://rtmagazine.com/products-treatment/diagnostics-testing/diagnostics/long-covid-diagnostic-test-launches-australia/
Reported as a 97% sensitivity but no word of specificity.
Is this essentially Bruce Patterson’s stuff or something additional?
Lupus pts are always checked for osteoporosis.
Hi Iono, Yes, when I went back to the long Covid test article, I saw that they had pulled it, but I also found the other article that you cited. When you go to the article links, it does seem to be from the Bruce Patterson group. That said, they used the test at a lot of centers in Australia. There are three possibilities 1) the original article seemed to be too much self-promotion or 2) the story was pulled until a big pharma company can come out with a similar test for use it in America or 3) there is no intention to validate long Covid cases in this country because of the potential cost to the health insurance and disability industries.
Thank you for the article, Cort.
I have been diagnosed with osteoporosis a few weeks ago.
I have (besides ME) hEDS which is known for giving osteoporosis risk. I didn’t know about fibromyalgia and ME/CSF being risk factors for osteoporosis.
I have 3 family members with diagnosed osteoporosis.
So I asked my doctor for a dexascan. At first she was reluctant (to young at 59). She knows next to nothing about EDS but believes me and acknowledges my research skills
We were both surprised I appeared to have osteoporosis.
My younger sibling in mid 30s was diagnosed with hypermobile EDS in Italy. They were given a certificate of rare disease and government covered biannual screening for several things, including DEXA. It showed osteoporosis. I only convinced my PCP to order DEXA years later (despite EDS,MCAS, ME/CFS dxes) after a covid-like illness triggered thrombophlebitis, 9 cavities, and significant hormonal disturbance. It showed osteoporosis. I was rxed medication and recommended to see an endocrinologist due to an early onset of osteoporosis at ~45 y.o. i had CFS almost 10 years at this point
I don’t know how I missed this blog–I must have been preoccupied.
Anyway, one can get osteoporosis from more than being in menopause, or lack of exercise or fibromyalgia etc. Among other conditions, it can be a precursor sign that you might be developing some sort of immune condition.
After my DEXA showed osteoporosis, my shrewd endocrinologist give me quite a few other tests which found that I have an M-spike. It is referred as having MGUS which stands for monoclonal gammopathy of unknown significance. This indicates that I may be prone to develop multiple myeloma. Having MGUS don’t have any symptoms but it is correlated with the development of osteoporosis. Most people don’t progress to myeloma, but once you get MGUS, you need to be monitored for life.
If you do develop osteoporosis, please ask your doctor to look into probable causes, especially disturbances in your other bodily systems–especially if you are older. Remember, osteoporosis can be caused by ‘something else.’