“Exercise encourages bone development, and lack of exercise means you’ll be more at risk of losing calcium from the bones and so developing osteoporosis….It also increases the risk of breaking a bone as a result of a fall.” NHS.UK
Osteoporosis (bone loss) can be caused by multiple ways but since exercise builds strong bones, it’s clear that the low levels of exercise tolerated in people with chronic fatigue syndrome (ME/CFS) and fibromyalgia (FM) puts them at an increased risk of it. Unfortunately, the best exercises to combat osteoporesis – weight-bearing activities such a walking, running, playing tennis, etc. – are the most difficult for most ME/CFS/FM patients to engage in. (Resistance exercises can help, though.)
Exercise reduces the risk of osteoporosis but few people with ME/CFS/FM can tolerate the amount of exercise recommended.
Besides, even the minimum exercise recommendations (3-5 miles of walking a week) to support bone health are far beyond what most can tolerate. The very healthiest among us might be able to manage 2 hours of walking a week but who with these diseases can tolerate the 45 minutes to 1 hour of moderate to vigorous exercise 5 days a week that’s recommended to support our health?.
A meta-analysis of four fibromyalgia studies has documented the seemingly inevitable: bone density is reduced in FM, leaving people with FM at an increased risk of osteoporosis. No chronic fatigue syndrome (ME/CFS) osteoporosis studies have been done, but given the worsened exercise intolerance in that diseas, bone density levels are surely worse.
Drugs can help improve bone density but they can come at a heavy cost. Carol Lefelt’s last Health Rising blog documented the dilemma she and probably many others with these diseases are facing as they age: to take possibly toxic drugs or risk worsening an already alarmingly low bone density. Four years later Carol is back to tell us how she’s doing now and to ask for ideas…
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In July, 2014, at the age of 71, I wrote a blog on Health Rising about my problems with ME/CFS and osteoporosis. My bone density scans were frightening all my doctors: my internist, my endocrinologist, and my ME/CFS specialist (Dr. Irma Rey from the Institute for Neuro-Immune Medicine at Nova Southwestern University), made clear that I had no choice but to take heavy-duty meds to stop bone loss and rebuild bones.
In that blog, I reviewed the (meager) results of my research into the side-effects of these drugs (Fosamax, Reclast, Prolia and Forteo) on ME/CFS patients. The few I found described pain, nausea, insomnia, and increased debilitating symptoms. Dr. Joseph Mercola called Fosamax “poison” and Dr. Jacob Teitlebaum warned about “severe musculoskeletal pain.”
Update: I will be 75 in April and I’ve had ME/CFS since January, 1999. Instead of starting the above meds, I sunk my head in the sand and just took a new calcium supplement recommended by the integrative medicine specialist Dr. Kate Thomsen: OSAplex MK-7.
The result is that in June, 2017, I began experiencing crippling pain in my right buttock that then strangely shifted to my left groin. I could barely walk. At night, the pain was so unbearable that when I shifted in my sleep, I woke screaming. Neither Tylenol nor Advil provided any relief. I visited an orthopedist and a series of MRI scans revealed stress or insufficiency fractures in the sacrum, pelvic and pubic bones with edema in the immediate surrounding soft tissues.
I pulled my head out of the sand and, hobbling with a cane, saw a local endocrinologist who suggested a consultation at the Columbia University Bone Center in order to explore options, since my ME/CFS made the situation so complicated and problematic. In August, Dr. Angela Carrelli from Columbia carefully and extensively reviewed the benefits and dangers of each option, and we decided I’d try Fosamax. Because of previous problems with esophagitis, I’d have to follow the directions very carefully, taking it with a full glass of water an hour before breakfast and staying upright for at least a half hour.
From Blausen.com staff (2014). “Medical gallery of Blausen Medical 2014”. WikiJournal of Medicine 1 (2). DOI:10.15347/wjm/2014.010. ISSN 2002-4436. [CC BY 3.0 (http://creativecommons.org/licenses/by/3.0)], via Wikimedia Commons
Opiates just made me feel even more muddled and didn’t relieve much pain from the fractures. The only help seemed to come from Tylenol taken regularly throughout the day, but when blood tests revealed an increase in liver enzymes, I had to stop Tylenol. Taking Meloxicam, an anti-inflammatory, helped a little.
With input from the local endocrinologist, I decided to stop the Fosamax for about 5 weeks and see if ME/CFS symptoms improved. It was impossible to explain how difficult it would be to recognize improvement, since only doctors with a clear understanding of the disease would have the necessary insight. While this doctor was sympathetic and wanted to be helpful, she just didn’t have the background.
What a dilemma! If I don’t take an osteoporosis med, I face more insufficiency fractures, pain, and who knows what kind of disability. If I do take an osteoporosis med, I can relapse into that familiar ME/CFS symptom exacerbation.
My husband and I are in Tucson for the winter, far from the doctors I’ve already consulted and like. I don’t want to start with someone new here, so I plan to see Dr. Carrelli from Columbia in April when we’re back east, hoping that I don’t dissolve into boneless jellyfish. I still have some residual groin pain, but just two Tylenol every other morning (strangely) helps. The ME/CFS misery has returned to its usual state, which means I’m moderately disabled as long as I pace myself very carefully.
Carol was finally forced to go on strong drugs to combat osteoporosis – and suffered the consequences.
I am very curious to know how others with ME/CFS for a long time have managed bone density issues. Have you tried a bisphosphonate (Fosamax, Actonel, Boniva or Reclast) or a newer treatment like Prolia, Forteo or Tymlos? Have you experienced any side effects you think are related to ME/CFS? Have bone scans revealed improvement? Have you suffered from stress fractures as I have? Have you found some alternative approach?
Without the ability to exercise enough to increase bone mass and prevent bone loss, and with a disease whose mechanisms are multi-systemic and essentially a mystery, we truly embody the cliché, “between a rock and a hard place.” Maybe some of you have had a different experience. I’d love to hear from you!
I am almost 64 and developed osteoporosis in my 40s. I also have CFS/ME and am mostly homebound. I was diagnosed with CFS in 2001 following Epstein Barr meningitis. I was unable to tolerate the drugs so really did nothing about it. 10 years ago I made major life style changes and after extensive research, developed my own protocol for osteoporosis. I have reversed from osteoporosis to osteopenia in my hip and from severe to mild osteoporosis in my spine. I did have one foot fracture a few years ago following a fall. My protocol includes Vitamin D, magnesium, Vitamin K2, low dose manganese, bone broth and diet. I did raw milk kefir for years but developed an intolerance to dairy. I do NOT take calcium supplements as I feel I get enough in my diet with the amount of leafy greens and bone broth I consume. I don’t know if diet and supplements can help her at the severity she’s at but I thought I would throw it out there. Boron is also frequently recommended but I have reservations about taking that.
Thanks Patricia. What kind of magnesium do you take? Bone broth sounds like a good idea. I found it stabilizing and a bit invigorating when I tried it. I was surprised. Thanks for mentioning that. (Costco recently got some in :))
Hi Cort, I take Magnesium Malate because the malate form is good for energy in CFS and I definitely feel a difference using other forms. I take 600 to 1000mg elemental magnesium/day. I make my own bone broth with bones from local farmers. I also eat an extremely clean diet and no grains at all.
Thanks….
I’m in similar condition, nerve damage from back surgery (fusion) in 2012 in left foot, then someone stepped on that foot and I got a LisFranc brake so it’s pretty worthless, hands and back are full of arthritis, as well as my right shoulder AND ME/CFS since 1987-ish I do many of the same supplements as Patricia. I take mostly supplements from the ProHealth web site, and I buy powdered bone broth which I put in my protein shakes_by Isagenix (extra protein for leaky gut & IBS). The bone broth is very helpful.
Hello, I have been on allendronic acid for about 5 years and each subsequent bone scan has seen increased bone density. Are the drugs mentioned here the same allendronic acid. I have not experienced any unusual side affects so far.
Looks like allendronic acid is a bisphosphonate like Fosamax, which seemed to increase my ME/CFS symptoms. Glad you’ve been able to tolerate it and seen improvement!
At age 46 I was diagnosed with osteopenia, and took Fosamax for 8 years, not much improvement, although it seemed to keep me in the ‘osteopenic’ range. Then after two years on Actonel, an encrinologist told me to stop all biphosphonates because she found documentation that suggested that prolonged periods on such drugs put bones into in a ‘silent state. A year ago (I’m now 63), my husband’s job was moved to Georgia, where I found a spine/pain management center. Unfortunately, my childhood-diagnosed (and untreated) scoliosis/arthritis pain worsened–an S curve, 49 and 28 degrees. Now that I’m getting short of breath (rules out exercise), this year I’m facing a possible 14-hour, 2-day open-spine surgery (from front & back), recovery at least a year. And that is only if my bone density is good enough for the 12-level fusion–I’m terrified. The other alternative is NO surgery…….. Either way I have no idea how the FM/CFS/ME situation will be affected, which the doctors refuse to acknowledge (they think all my pain is spinal and are in the process of taking away my meager 10 mg oxycontin, thanks to the current opioid crisis). Btw, this is the diagnosis from the top spine surgeon at Emory University Hospital in Atlanta, so I guess she knows what she’s talking about. Moral of my sob story: There are alternatives–years before she died, my mother had a severe case of osteoporosis, and since her stomach was ravaged from NSAIDs for rheumatoid arthritis, she couldn’t take the oral drugs and was prescribed a nasal spray for her condition. I think it was Reclast? May be worth investigating for those who’ve tried other drugs. Has anyone here with either fm, cfs/me previous to major surgery?
My dear wife has been on FMLA Long term disability and off work since June 2021, last year. It’s Aug 2022 and her application for ssdi languishes at the SSA.
She has Diabetes, Retinopathy, Fibromyalgia, Chronic Fatigue, Osteoporosis, Osteopenia, Costochondritis, and the doctors have withheld treatments, oral medications for diabetes in an attempt to scare her into becoming a life long customer dependent on insulin. My wife refused and has been taking oral meds for this, that, and the other things. Her skin has discolored in places and is dry and rough in patches on her delicate arms. She tries to eat healthy, avoids fast food, but loves her cultural meats etc. Her doctors tell her it’s time to go back to work, standing all day in the teller line. She cried cause she couldn’t read the identifications of customers or the small print. Her co-workers can’t believe how these doctors are. In fact, our daughter recieved a text from FMLA reporting their calls and requests for medical reports for Maria and that the medical offices refused and neglected to communicate. We know it’s true because they have done us that way. It’s a shame and this government is depravedly complicit.
Low impact exercise. You don’t have to expend a lot of energy, just stress the bones with mild impact, like jumping and punching,or tapping.
Thanks for your comments, Patricia. I recently added bone broth to my diet — both organic ready-made and home-made. And I’ve been using lactose-free kefir for a few years. But as you say, my osteoporosis is so severe that diet and supplements may not help enough.
I have been told by a very well known ME/CFS doctor that around 5000 iu of Vitamin D3 is necessary for the bones to keep them healthy if one isn’t able to go out in the sun. Also a diet that includes lots of Vitamin K will help.
She also says that a Ketogenic Diet will benefit all of us with this diet because once one is adapted to a much lower level of carbs ones energy will be more consistent. The amount of carbs one can tolerate will be very individual.
Also we might benefit from glandular supplements if our thyroid and adrenals aren’t functioning well and the simple way to test for this is by checking our body temperature several times a day for say 5 days and then you get an average. If it’s too low then nothing is going to function as it should. I have been addressing all these issues and notice a good improvement in energy,
The first time I went to the hospital for an orthopedic procedure, I was surprised by how much my bill was for other things. My doctor had directed me to the hospital, and so I thought it would be part of the bill to pay for his services. But no, he had directed me to the orthopedic hospital indiana only because there was no other place that could do what I needed. So that part of my bill was non-medical. If you’re not careful, you may end up paying for things that are not medical, so go to them.
Carol, I also have dealt with osteoporosis for decades. I have had fibromyalgia symptoms since childhood, but was officially diagnosed in 1992. Last June, my endocrinologist prescribed Prolia, which the first dose was given. I ended up bedridden for 2 months, with excruciating pain and fatigue. I have had lesser exacerbations, since then. My family physician recommended stopping Prolia.I have been treated previously with oral meds for osteoporosis, with GI side effects. Currently, I am trying to get more calcium through foods and supplements. I also increased my walking as tolerated.I am 63 years old, with a three generation history of osteoporosis. I am also searching for better treatment, since both parents had fractured hips, and other fractures. It certainly is a cunundrum!
Uh oh. A bad reaction to Prolia. When you say you’ve had lesser exacerbations, that makes me think you’re tolerating it better. So hard to make good decisions about this!
Hi Cort, I’m wondering when Courtene PTIII would be published. I am looking forward to reading it.
Soon – hopefully in the next week.
What is this? I Googled “Courtene PTIII” and came up with nothing.
You can find more about Cortene – a drug that is being trialed in ME/cFS – here – https://www.healthrising.org/blog/2018/02/08/cortene-way-new-drug-trialed-chronic-fatigue-syndrome-mecfs-soon-pt/
I have had me’cfs since for 28 yrs. Also osteoporosis-in and out of. i take bioidentical hormones-and d3, dhes, magnesium… my dr says none of his patients have broken a bone-not me/cfs patients but gynecology. i do a little exercise on the more minimal side but am able to lift 2 lb weights now. my bone strenth is only a point below normal
I took hormones for a number of years, but was told to stop after a diagnosis of DCIS in my right breast. It’s good that you can lift those weights. When you say ‘bone strength, I assume you’re referring to results of a DEXA scan.
I am 61 with severe osteoporosis and chronic fatigue. However I am able to work a full time job but it is difficult to also exercise.
I took forteo in 2005 and 2006 without side effects and density improved quite a bit. Two years was the max time.
No one told me my bone increase from forteo would disappear when I stopped forteo. Shock
In 2013 I started taking Prolia. I think I only have one more 6 month shot to reach my limit for Prolia. I have had bone gain from Prolia.
I did not have side effects from forteo or Prolia.
One thing though…I broke my elbow and it healed fine but is a little bent. Drs do not talk about it but I think forteo and Prolia contributed to abnormal collagen build up in my broken elbow. Had to go to PT 2x week for 4 months to get it as straight as possible. It still works fine.
Going to buy a mortorized trike so I can pedal along my fast husband and not fall
??
My bone Dr is going to a conference in May to get info on a new drug. We’ll see….
I take calc, magnesium, lots of vit k. 5000 iu daily
Will look into maganese(sp)
I can walk several times a week so I am fortunate.
With all this my bone density has increased but is still quite bad. lol ?
I am glad I took all the most recent drugs of the time since 2005. I think it has made a big difference.
I will continue to take new bone drugs as they come along.
I am working with Irina Rosenfeld at Nova on cf. so far best help from glutathione nasal spray 3x day and 1.5mg naltrexone am & pm. Naltrexone makes my ears ring at various levels through the day but I decided it was worth it for the energy.
I sincerely hope this helps you and anyone else who reads my comment. It can get complicated in the medical field these days.
I eat organic lean proteins, dark green veggies, nuts, seeds, whole fruit, cholrella and try to stay away from sugar, grains and gluten. I think diet is 90% of my good health.
I sing HU a love song to God.
SingHU.com
Tuning in to the Holy Spirit’s wisdom for me helps me to create a happier life.
Love ❤️ Mona
Thanks for reporting your good results with the meds.
Hi Carol. I have osteopenia and am now facing 10 years of aromatase inhibitors for a recent breast cancer diagnosis. A friend found this research article which can help with bone loss; https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5310667/
You mentioned you already take the Strontium, but this research ties in Melatonin as important in bone remodeling. I found two products which contain all the necessary ingredients; Advanced Bionutritionals Ultimate Bone Support and any sublingual Melatonin. They are not too expensive. The only caveat is the pills are huge and rock hard–but I just dissolve them in water so no problem.
Hope this might help. This combo has science backing it up…
I am so sorry for your recent breastcancer diagnosis. As if me/cfs is not enough to deal with 🙁
verry much sthrenght!
bigg huggs!
Thanks for the link to that article. It’s too technical for my feeble brain, but I’m going to give it to my endocrinologist. I hope the aromatase inhibitors don’t affect your bone density.
That’s an interesting combination, and a great shout-out for Pure Encapsulations! Now I know where to go for (more)( supplements. But if you have issues with your thyroid–I’m told melatonin is not recommended, though that was from just one source.
My hormone expert gyne, put me on testosterone to help my osteopenia. Haven’t had follow up bone scan yet, so we’ll see.
Hello Carol. I am aged 65 and in the UK. In the UK they don’t routinely check women’s bones with a DEXA, but I got checked a year ago, because I had a suppressed TSH with my T3 thyroid meds and he therefore thought I might have osteoporosis. I did have, but have had no fractures and whether he’s right about the osteoporosis being partly caused by too much T3 is open to question. What I do know is that if I reduce my dose then I become too ill to function (immune system in particular) so after a trial of reducing, I am back to my old dose.
So…. maybe like you I have been putting my head in the sand. I certainly looked at the drugs scenario and decided to reject them for now, unless things get a lot worse (there is a study done last year that looked at all of them, and if what they say is true, they are not that effective anyway). However I have also done a lot of research in the past year and am using many of the supplements mentioned here – D3, Vit K2, magnesium, and Boron. I also take Collagen which has made a noticeable difference to my creaky knees, so am hoping it’s also helping my bones. I also go to a herbalist who gives me Black Cohosh. In addition I do have a good diet with minimal processed foods, and low sugar.
I am not able to exercise as much as I would like, but I do some. I do gardening in the summer and a little walking. I also belong to a dance/theatre groups but it varies a lot on how much I can participate (it’s for disabled people so I can do what I feel I can manage). When I am on T3/Liothyronine, rather than T4/Thyroxine, then I am able to build up my stamina better.
Ultimately treatment is to protect us from breaking our bones, not just about building up bone density – DEXA scans tell us nothing about bone quality, and that’s also important. Lastly, I did have a nasty fall downstairs late last year, and despite landing heavily on my spine, where I do have osteoporosis, I did not actually break anything.
Good luck to you Carol, and I hope you find something that helps.
Thank you, Elaine. I’ve taken note of your supplements. Gardening, walking and that dance/theater group must bring you a lot of pleasure!
Hi Carol, I am 62 yrs old and have had CFS for 15 years now. I have osteoporosis with a t score of -3.8. My endocrinologist wants me to start Prolia but I am so frightened of feeling worse than I already do from CFS. I am 5’1 and weigh 93 lbs. no falls or fxs yet.
Even my CFS dr in NYC advises me to listen to my endocrinologist. But after hearing so many horror stories and listening to my gut, I’ve decided to try to continue with good diet and supplements. I just can’t bring myself to take the meds. It’s a tough decision to make.
Try taking Drs.Best ‘Bone Maker Complex’ first, available on Amazon.com for about $18/mo. It has almost everything you need nutritionally to build bones.
I have been giving Bone Maker out as a hostess gift to friends! LOL IMHO Everyone over 40 or going dairy free should be on it.
Extra magnesium is also good for building energy levels for anyone with CFS. It is a main part of the late Dr. Martin Lerner’s protocol that everyone has been using with good results, per research Dr. Montoya at Stanford, Dr. Myhill in the UK, etc.
I also take iodine (Iodorol) and Selenium (200 mcg/day) to help with the heart, thyroid, and endocrine system, keep a light tan most the year (for the natural D3 & to avoid burns), and take a high quality multi.
‘Powerlifting’ (the amount of weights are nothing compared to what I did in my 20s!) for about 40 minutes twice a week only involves 20 second sets with a 3 minute recovery, and has helped rebuild my bones.
Every year you have new bones, so proper nutrition is a must. Another must is avoiding Prilosec and similar after 2 weeks of use since it greatly reduces mineral and protein absorption. Take Betaine HCL or apple cider vinegar plus your bone supplements 15 min before meals instead.
I avoid all patent drugs since they are by definition chemicals (unnatural) and damage the body. They also feed the toxin-loving EBV.
As a result of the above, I have gone from a job-leaving level 1 on the CFS Energy Index back up to a 4 over 2 years; Hoping to cut out cheese and gluten and see if I can then get to a 5 or more and lose some weight this summer (and have the energy to do some traveling, now that I am retired!).
That’s exactly what I did, Barbara. With all my doctors insisting I go on the heavy-duty meds, I refused and just hoped for the best. I shared your fears of ME/CFS worsening. Problem is that there are horror stories on both sides: taking the meds and not taking the meds!
Yikes! This hit close to home. I am 64 years old and have had ME/CFS for 21 years. I have not been able to work for the last 19 years and have often worried about aging with this condition. If you feel like 90 in your 50’s what will the future look like? For the past year I have been having a great deal of pain in both buttocks and hips. The pain goes around into my groin and often down my legs. I have always believed it was from the fibromyalgia and never thought of the possibility of bone fractures. I will now ask my doctor to send me for exrays. I can only tolerate walking sporadically depending on my fatigue level and always use a cane for balance.
Thank you for sharing your experience. I hope we can find ways of helping our bones without having to resort to these toxic drugs.
Hip pain:
Try Senior Yoga. I did it for cheap through my local community college’s 50+ programs. Most the class was hip stretches, some shoulder work, and a bit of gentle core building & balance exercises. Some classes were done entirely sitting in a chair! It is the best anti-arthritis program I know of, plus a good way to meet other people that doesn’t involve junk food or alcohol.
Feldenkrais (“Awareness Through Movement”) has a lot of “lessons” that are done lying on one’s back on the floor. And extremely beneficial for absolutely everyone regardless of your particular condition.
I tried Senior Yoga, but even the easiest of easy movements had me crashing afterward and unable to recover for days. I even bought a dvd I could adapt on my own, but I just couldn’t tolerate the movement. I doubt I could manage Feldenkrais either; every once in a while I get fed up and attempt something, only to regret it later. I also doubt even if I could sustain even the most minimal level of any of these movement programs, the impact on my bones would be anywhere near meaningful.
Yes, it seems we share a similar situation. I’m curious about the results of any x-rays you have. Thanks for responding.
I was diagnosed with osteopenia 5 years ago. I’m currently 64 yrs old and had a new results this year with a huge decrease in bone density. I was advised to do 1200 Calcium Citrate (best absorbed) each day (only 600 mg per dose) and I take 4000 mg of Vit D–along with many other vits and supp. I’m seeing a great chiropractor that advised me to use weights when walk but they must be “above the waist”. I found an old backpack and put 5 lbs of hard bound books in it and I walk carrying it. I started at 5 min per day and am now up to 15-30 per day. You can also hold a 12-16 oz filled beverage container in each hand as you walk. Those work good as weights too. Good news, since I started walking I no longer have to sit on a heating pad for pain in my bad hip. I used to be on it every day. I think something might be working.
It’s great that you can do all that walking with weights! Hope that helps reverse the decrease in your bone density.
Human growth hormone can significantly increase bone density. Good luck getting a US doctor to prescribe it, though (most mainstream US doctors like keeping people sick so they can make more money off them). But if you can find a reliable source (and you tolerate it), GH can definitely make a difference.
Here’s a study showing the positive long term effects of HGH on bone density and reduced fractures:
Effect of Growth Hormone Treatment on Fractures and Quality of Life in Postmenopausal Osteoporosis: A 10-Year Follow-Up Study. – PubMed – NCBI
https://www.ncbi.nlm.nih.gov/pubmed/26312576
I read the HGH study. This sounds like the ticket! Why is it so hard to have it prescribed?
Cecelia asked why HGH is so hard to be prescribed; it is because the real stuff is very expensive and only in injectable form. Children with growth problems have priority for the limited supplies.
The body produces HGH between 10pm and 2am, while it is in deep sleep. Most CFS people miss this sleep window.
Forcing yourself into it by getting up before 6am, staying awake all day (but no pm caffeine) then going to bed at 9:30 or 10pm and taking benadryl, melatonin, Ambien, or whatever works for you beforehand until the body is retrained (which takes 1-4 weeks) is the cheap and easy solution.
Note: Any oral or sublingual HGH does NOT work and is a fraud beyond any placebo effect.
Real HGH is scary stuff. There is no way I would take it. But you can buy HGH stimulator in the health food store and it seems to really do something.
Thanks for all this information on HGH. I will put it on my list to talk to the endocrinologist about.
How about Evista/raloxifene? It’s SERM, selective estrogen receptor modulator. It halves your risk of breast cancer but it does increase your risk of clots like estrogens do. This drug acts like estrogen to some tissues but not to all tissues and it builds bone. I haven’t been on it long enough to know how much of a difference it makes but it’s very easily tolerated.
I have also had good luck in the past with strontium along with AlgaeCal. My DEXA levels were study for a while and I was stupid enough to stop taking the strontium and my DEXA levels were study for a while and I was stupid enough to stop taking the strontium and be able to go because it’s a bit expensive and then a couple years later I have a DEXA and it’s worse than before. AlgaeCal because it’s a bit expensive and then a couple years later I had a DEXA and it’s worse than before. So now I am trying the Evista. Dr recommends it highly I have read that the European version of strontium can also cause clots so I was a little afraid to use both Evista and the US strontium together. (strontium ranelate there as a prescription med; strontium citrate OTC in the US; studies have mainly only been done on the European version). I did for a while but then stopped the strontium. I see my GYN next month and plan to ask for follow up DEXA.
Thanks, Sue. Good luck with the results of your next DEXA.
I’m not sure why but Strontium was once studied for bone health and then dropped. Dr. Bruce Ames has a website where he sells Juvenon and other supplements that came out of his lifetime of research (he’s in his 90s, he was never a clinician, more like professor-researcher). I tend to trust him because I like his videos explaining mitochondria, originally on UCSD Aging website, now on youtube/vimeo.
While I can’t vouch for it working for you, it was worth mentioning strontium. Here’s a starting point: https://www.ncbi.nlm.nih.gov/pubmed/?term=strontium+and+osteoporosis
Looks like the Chinese and Greeks have picked up the research though. I’m glad to see that. It’s an OTC mineral that isn’t considered essential and from what I’ve read, replaces Calcium in bones so it’s not a mineral that has the millions of uses that Calcium does in your body. Not sure about brittleness effects or whether making more calcium available to your body may have parathyroid effects… all good things to wonder about. The claim made is it stops the bone loss, not that it rebuilds it.
Thanks for the link. I’ll look at those articles.
Thank you for sharing your story Carol. This darn illness creates so many lifetime dilemmas that doctors and people can’t even imagine. We are all getting older and osteoporosis is just one of the many battles we may face. It can be depressing, overwhelming and create a feeling of helplessness, so my heart and prayers go out to you. I have avoided the bone density test for this exact reason…what would I do anyway?? I’m currently on a drug (Remicade) necessary to stop the damaging inflammation on my spinal cord…but what is it doing to my ME/CFS?? Same situation, different boat.?
Hi Corinne,
I remember your postings from a few years ago about your treatment with Dr. Peterson and wonder if you’re still seeing him. I hope the Remicade is helping the spinal cord inflammation. You are exactly right about all of these ongoing issues as we age, issues that are so confounding because of the ME/CFS.
Hi, I have FIbromyalgia for more than 15 years and I had been taking Boniva (pills), after Boniva injection every three months and now Prolia every 6 months. Since the secondary effects of these medication are similar to the pain/fatigue/ etc of FM I did not experience anything else, at least not fracture or infection, etc.
My ostepenia/osteoporosis are stable (last densitometry 2016), I don’t present additional damage on my bonds and in my opinion the medication for osteoporosis is working.
I’m 56 and I don’t have any other health problem, I have enough with FM and all its “amenities “
Take care
Elena
So after the pills and injection, you didn’t notice any impact on your general condition. That’s helpful information!
It’s definitely a tricky subject and too late for the author now, but I strongly recommend all women who are able to take estrogen to do so once they get close to menopause. Especially if it happens early. Many ME and fibromyalgia sufferers have hormonal deficiencies. Low estrogen also causes all over body pain and fatigue so getting your levels up could help you feel better overall. Estrogen is a well proven way to prevent bone loss and the bioidentical estrogen products available these days have minimal side effects compared to the scary horse urine pills that used to be the only choice. A very low dose is enough to prevent bone loss and you can get pills, creams or patches. If you have a uterus estrogen must be combined with progesterone. Get blood tests for testosterone and dhea as well, low levels will cause fatigue, pain and poor effect of pain meds. Women who have had breast, ovarian and other hormone sensitive cancers sadly cannot take hormones, but for the rest of us it’s a good option. Sufficient levels of vitamin D is also very important and must be supplemented unless you are out in the sun a lot, which for obvious reasons most of us are not. Please discuss the issue with your doctors and focus on prevention.
Yes, I wish I could go back on the hormones. I took them for years, before the arrival of ME/CFS and shortly after, but then discovered DCIS and after two lumpectomies, the surgeon and oncologist encouraged me to stop the hormones. You’re right though. It’s too late for me now, since I need to focus on bone restoration as well as preventing bone loss.
At age 50 I had a stress fracture in my foot and went to an orthopedic surgeon who told me that likely I had osteoporosis (had osteopenia heading into osteoporosis) and when I told him I was taking calcium, magnesium and Vit D said “If you don’t have hormones, you can’t correct bone loss. You may be able to prevent more loss but you won’t add or strengthen bone.” I did, in fact take some bio-identical hormones until I started developing uterine and ovarian cysts. I continued to lose bone rapidly while taking Fosamax for TEN YEARS! When I started losing teeth to cracks below the gumline, and needed dental surgeries, I stopped the Fosamax about 6 months before surgery started. When I tipped over into osteoporosis in hips, I asked the doctor for a trial of low dose estrogen and progesterone–oral. He provided it, and after a year of that with exercise with weights, my bone density improved for the first time since I’d been testing it. After and year of hormones I stopped, continuing the exercise and adding strontium and VitK. Bone density lowered a slight bit but has been maintained so far at osteopenia levels. I have no advice but I don’t like the idea of any of the meds that are infusions or injections. You don’t know what will happen and you won’t be able to stop the effects as easily as stopping a weekly pill. My own CFS has stabilized with careful energy management, diet, supplements, etc. First I took all kinds of antioxidants and then added magnesium–as high doses as I could. I came out of the worst of it when I started Armour thyroid (at varying levels over the years) and Effexor (sustained release) after being homebound for about 5 years. My daughter started losing bone as well (in jaw) very young after crashing into CFS at age 18. She has tried many things to deal with CFS and been disabled for 20 years. We tested genes for methylation, trans-sulfuration, etc. and she has more severe detox problems than I. She got the “double whammy” genes from my husband as well as me. I am now 69 and we both take a lot of magnesium as well as the calcium and K2 and Vit D. Have not been able to get out Vit D up to normal. I do very restricted exercise–nothing very aerobic but weights if possible. Anything that makes us feel worse that we don’t get adjusted to in a week or so, we don’t do. Decided it’s not worth feeling MORE miserable in hopes that what causes the misery will help us eventually.
You have clearly been through a lot as you and your daughter try to manage all these complications. At least you’ve stabilized, and seem to manage some restricted exercise. Good luck to you both!
As we age our stomach levels of HcL decrease along with our ability to digest minerals needed for rebuilding our bones. Take the HcL challenge test and supplement with Betaine Hydrochloride at the level you need to begin proper digestion. Our friend, Joshua Grant of Mendus, kindly recommended this to me. San Graci’s book, The Bone Building Solution, contains all the information you need to understand and correct osteoporosis. Look at what high priced athletes to for bone healing and restoration… they use pulsed electro magnetic field therapy with great success. I have a full body PEMF mat with an osteoporosis setting to help the nutrients do what they’re supposed to do, so diet is crucial.
Great conversation everyone, just what I needed. Thank you Cort, been following your dedicated work for the 28 years of my ME journey. I’m now 72, have osteoporosis, can manage a few miles of walking a week – in NYC walking is a natural part of daily life.
Diet has always been “clean”, using many of the supplements above, but I can’t tolerate Calcium, which my new ME friendly endocrinologist recommends. I will try a few suggested here. With former, endocrinologist, I made the hard decision and had first Reclast infusion July 2017, three months of side effects: GI issues and worsened fatigue.
The experiences you’ve all shared are helping me sort out next steps – and having an endo doc that understands ME is relieving. We are assessing blood work; what my tummy can digest (can’t tolerate Calcium Citrate) and whether these pharmaceutical osteo meds are helping – next DEXA July ’18.
My new endo may prefer Prolia (injection 2 x year) for me because my primary bone loss is in the hip.
I believe we need better technology than the DEXA – like Elaine said, the quality of the bone counts.
If anyone knows of Calcium supplements that are OK for folks with intolerance please do let us know. I stay on the Low FODMAP diet to help with IBS symptoms.
All best ~ Jane
Good luck Jane…NYC – which I was born in – and left before I could remember – is definitely walking territory. It’s exhausting but I love to visit the big apple 🙂
I take Liquid Calcium Magnesium Berry (with magnesium) from Integrative Therapeutics — wonder if that might be more tolerable for you. You are so lucky to have an endocrinologist sensitive to ME/CFS. If he/she is in Manhattan, I’d be interested in the name. I live about 45 min away in New Jersey. Before ME/CFS, my husband and I walked long distances around the city. Now he pushes me in my wheelchair, which might be good for his bones but doesn’t do much for mine.
I am 70, and have been on Fosamax for 3 years. It has stopped my bone density loss, and I haven’t noticed any difference in ME/CFS symptoms. But I need to track back and think about that.
Wait..what ?? Rethinking this. I had assumed that my energy levels had suffered because of stress and aging. BUT, they actually started to drop about the time I started on Fosamax. Checking with my pharmacist today about the time line. Thanks for posting this discussion. I was able to hike 2 miles 3 years ago just before I started treating osteoporosis. and that is unthinkable right now.
Thank, Suzanne. That’s helpful. At least, though, Fosamax has helped the bone loss. I wonder if over the three years you’ve noticed a continuing increase in fatigue, or if the fatigue just dropped and then stayed at pretty much the same level.
Just lost a Long detailed email. out of brainpower.
Marodyne Liv MD low impact vibration helps a few with ME/CFS, for osteoporosis
REfurbished for less.
Complimentary Prescriptions REno NV makes 15 mg caps of K2. Japanese treat osteo with 45 mg a day.
I’m more severe, mostly bedbound, can’t exercise, use cane, 58. Couldn’t tolerate the Liv MD or the high K2. Upping my mag, take 100 mcg K2 with 10,000 D3 and only 250 mg Calcium twice daily, as not in my diet much, diet pretty limited. I wish you the best. Your first post was what helped point me in direction of all the info I found to help me. Thank you.
Foods with silicon, dr told me. lists online. Builds bone too.
Hi, Denise,
I’ve considered the low impact vibration and will talk more with the endocrinologist about it, but right now I’m afraid that it might aggravate pain from the insufficiency fractures I’ve already experienced. Thanks for your good wishes!
I purchased a vibrating exercise machine and made symptoms worse .
Hi Carol,
I am very grateful to you for sharing your story, both then and now. I am 71, and at the same stage as you were back then. I have a Tscore of -3, dropping a tenth of a point each year, and my head in the sand, and am relying on supplements.
I want to ask you a question. In hindsight, would you have taken those heavy drugs at age 71 if you’d known what you know now?
I hope that for you, and for all of us, a safe and easy-to-take new drug is created soon.
Love, Sue Camarados
Good question, Sue. In hindsight, I still wouldn’t have taken the drugs 4 years ago, BUT I would have used the Marodyne Liv MD low impact vibration machine and maybe upped my supplements. I do wonder if any drug for osteoporosis will ever be safe for those of us with ME/CFS, given the complexity of this disease. But, like you, I still hope.
Everyone commenting on this thread seems to have CFS.
I raise the question about Fibromyalgia: if you have this, you certainly have elevated Calcium and depleted Magnesium. Therefore, is bone density not such an issue? Of course there is the possibility that deconditioning through exercise avoidance, causes the bone weakness referred to above – with Calcium swamping the tissues where it shouldn’t be (eg in the muscles and the fascia) it would be nice to think it was super-available for where it is actually needed.
“elevated Calcium and depleted Magnesium”
Is that in the blood tests? Or in hair toxicity tests?
Don’t know if it tells a lot about calcium in the bones. Calcium is difficult to “fix”, even in the bones. If bones lose mass, where does it end up? In the blood? Excreted through urine? Piled up in hair and calcium deposits on tendons and fascia?
There is plenty of discussion if bone mass loss equals too few calcium in the food or even in the blood. Getting calcium where it needs to be and stay there is difficult too.
Maybe there are many FM patients who had a full body bone scan to see if pain originates from there. I had, but I’m not the clear FM type you are looking for as I have both ME and FM. I guess if you had such scan and the original data is still available it could be used to calculate the total bone mass. Now actually getting this done…
What a timely subject for me. I was just diagnosed with osteoporosis in December after getting a stress fracture in my foot and suspecting osteoporosis was the cause.
I was on bioidentical hormones for years and only stopped three years ago due to some uterine bleeding. I was holding steady at osteopenia until I went off the hormones, and now I have -3 T scores in my hips. I thought long and hard about the bisphosphonate drugs. I can’t take the oral ones because of gastritis I developed in November after a stomach bug, so I looked into Reclast. The stories I’ve heard about people having side effects for months and months were pretty scary. So I was talking to my GP about it, and since I had some statistical questions about it she couldn’t answer, she brought in the clinic pharmacist. This pharmacist not only teaches pharmacology at the local university, she is an expert in women’s health.
She basically told me that I could gain as much bone mass by going back on the hormones as I would by using any of the drugs. She gave me the usual caveat about hormones possibly causing clots, higher cancer risk, etc. but said the risk is probably lower on bioidentical hormones. (There haven’t actually been studies done comparing the two because they couldn’t recruit enough subjects on bioidentical hormones to compare). I don’t have high risk for any of those side effects, so I decided I’m much more comfortable on the hormones. I was on a pretty low dose before, so I don’t imagine it will take a lot. And if I start bleeding again, I’ll just have to titrate down until it stops.
Meanwhile, I started taking Vitamin Code Grow Bone System, which has calcium twice a day and strontium once a day. I’m also going to try some light weights and walking (minimal at first) as soon as I get over my annual worse-in-winter fatigue.
Thanks for writing about this, Cort. I really appreciate everyone’s input.
That’s interesting, Laurel. My endocrinologist explained that hormones wouldn’t actually replace bone mass like the other meds, but I might opt for that anyway. I stopped the hormone replacement therapy I had been on for years when I was diagnosed with Ductal Carcinoma in Situ in 2001, but it’s been 17 years now, and maybe I’ll reconsider. Thanks.
Hi Carol!
I found an alternative approach!
I knew that osteoporosis runs in my family. Early in my ME/CFS I discovered that I need a lot of calcium and a good amount of magnesium in order to sleep.
(It surely varies for everyone, but I take 2250 mg of calcium and 800 mg of magnesium a day, in the form of Now Calcium Lactate, Jarrow Bone-Up and Solaray magnesium asporotate. Since the digestive system can only absorb 500 mg of calcium at a time, I take it in 5 doses of 450 mg each, two hours apart.)
I also take a bit of strontium and standard amounts of most other minerals. But the thing that was the final piece of the puzzle was SILICA.
This stuff has saved my hide: http://shop.eidon.com/liquid-silica-mineral-supplement/
It is a liquid silica supplement.
I tried Super Silica, Bio-Sil, and Angstrom Minerals slicia, and they all gave me nerve pain in my feet. I think that a lot of liquid drugs and supplements get exposed to mold toxins in the maunfacturing process.
Horsetail pills are a good herbal source of silica, but I was already taking three other herbs so I didn’t want to add a fourth one.
I am 56 and my last bone scan showed that my bones are denser than average.
If you are going to stick your head in the sand about this issue, then while you are down there, please eat some of that sand! (sand = silica)
Ha. I think I’ll skip the sand diet. . .but I will certainly look into the liquid silica supplement.
I want to add something….
I think the Eidon liquid silica is healing my digestive system!
As I’ve been taking it, it seems like I am absorbing nutients better. I’ve been able to take smaller amounts of calcium. This is great!
Thank you so much for this post. I have been having knee issues and since Dec lower back pain and associated hip pain radiating down both legs. It has been difficult and sometimes frightening to walk.
Tomorrow I’m making an appt with my Dr for an MRI. It has been a few years since I’ve had a DEXA scan.
I am 69 and my DEXA scans have shown very good bone density since age 50 except for osteopenia in my lower back. (This I attribute to flying out of a car in 1989 and landing on my rear end.) I have been taking a bioidentical estrogen patch for about 20 years. I get a 1 mg patch and cut it in fourths to save money.I also take a little calcium, magnesium, and D3 drops with K2 I assumed this was why my bone density has been so good.
However, I have not been using the estrogen much the last couple of years.
Hopefully, my bones are still OK and that is not the reason for this pain.
I’m wondering about the results of your MRI. Hope that the pain issue has resolved and that your bones are still strong.
My mother-in-law aged 83 was suffering from osteoporosis for several years and was under treatment but no cure. She have broken my neck once and back 5 times and also experienced constant pain in her shoulders, back and limbs. A friend introduced me to Best Health Herbal Centre, she told me Best Health Herbal Centre osteoporosis herbal remedy reversed her mother’s osteoporosis within 5 weeks, Now she is osteoporosis free. January this year i purchased osteoporosis herbal remedy for my mother-in-law, she only used it for 5 weeks, her osteoporosis was totally reversed. All thanks to Best health Herbal Centre for saving my mother-in-law life. visit their website for more information ww w .besthealthherbalcentre. com.
Hi Carol,
I am 62 and have many of your same issues with bone health and exercise intolerance. One tip I heard on the Dr. Oz show is to stand on one leg at a time to put stress on your bones. I have been trying this because I can’t do much, if any, exercise without crashing. My recent bone density test showed that I didn’t lose much bone in the past 2 years. I do take low dose hormones and use supplements. I have been on supplements and hormones for many years and my bone density keep dropping anyway. I have no idea if standing on one leg for a few minutes a day is actually helping, but it has to be better than nothing. I even crash if I do very light stretching (like the Miranda White Esmond Forever Painless stretches on public TV).
I, too, crash after even very light stretching. Thanks for the suggestion about standing on one leg. At least it’s been helping me to feel like I’m doing something possibly helpful!
Carol,found my artical about standing on one leg – recommendations are to stand on one leg for 1 minute, then change legs. Do this 3 times per day. I would start with whatever you can tolerate and work up from there. This was written up in The Journal of Orthopedic Science in 2006.
I developed my “dance” as I’m brushing my teeth.
One leg + brush inside bottom right, switch legs, brush bottom inside left,
switch legs, upper inside right,,switch legs, upper inside left,
switch legs, upper outside right, switch legs, do upper outside left
switch legs , bottom outside right, switch legs, bottom outside left.
Music helps, so does smiling. Hang on to counter, tighten abs as changing sides. BREATHE.
The hardest part is remembering where I am in the sequence…good brain food, right?
Hi,
I have Osteopenia/porosis, am 61, CFS. For a while I tried a few of the exercises in the book WALKING TALL, which I recommend. I had to stop them because of a slipped disc (unrelated), but some of those movements can be done in bed even if you have severe energy limits (I do), and Orthostatic Intolerance (I do), which limits how much you can stand or walk. Given your bone weakness, I’d check with an MD, or better yet, a qualified PT before trying any new exercises to see if they are safe for you. I’m going to try the suggestion posted re: standing on one leg briefly. I was jumping 20 x daily, but with my back problem, stopped. I sit in the sun almost daily for 20 minutes for vitamin D, and also take D supplement and Calcium, but my bones are getting worse. I tried Reclast, but it may have caused a relapse. No way to be sure, but I won’t risk it again. It might be worth trying some oral meds to see if you can tolerate, and if not, stop them. I have stomach distress, so can’t tolerate many meds. It’s a serious issue even for non-CFS women who are aging. We need more research!!!!! Best of luck to all of you.
I’ll look into that book — though I have tried gentle yoga for seniors which involve bed stretches, and still experienced PEM. Problem with physical therapists I’ve been to in the past is their lack of familiarity with ME/CFS. The’ve been sympathetic and understanding, but they just don’t know how to proceed. So it’s all a constant experiment, with lots of crashes.
So sorry to hear about what you are going through, Carol. I ,too, have have ME/CFS since 1999, and was diagnosed with osteoporosis in 2001.I resisted Fosamax, but finally went on it for 2 years, and then discontinued it because of the possibility of jaw necrosis[ which some people had developed]. I have moderately severe ME…. so can do no exercise at all. I had to develop a plan…1… I decided on natural hormone replacement 2..calcium[250mgm 3 magnesium malate and magnesium glycinate[the best absorbed forms.3 vit k2[ helps get calcium into the bone 4..vit D 5000IU [had the test done to see my level].[And of course, I take many other supplements!] Now…my bone densities have remained stable since 2001…in fact in 2018 ,my bone density has increased by 8.5% , using this regime. And, this is without any exercise. I realise we are all individual and what works for one, may not work for another. I do not know if any of this will help. I do wish you every success. Take care.
I will add to my comment, by saying that the hormone replacement I am taking is biodentical estogen low dose patches, and oral prometrium[1OOmgm] Also the recommended daily dose of calcium is 1200mg, and we should try to get as much of this as possible from the diet …more is not better. And the Vit D must be Vit D3, not D2. I did try strontium for awhile…but did not find it helpful.
Sorry to hear about the pain, Carol.
I’m in a special bone metabolic situation where I just want to hold on to the bones I have now and not necessarily build new bone. Maybe what I say can give some food for thought for others.
I had osteopenia for many years, but now they say I’m normal and considered a low-fracture risk. I don’t totally believe it, because the numbers show I lost a few percent of my bone density. I guess they mean I am normal compared to other people now. So that must mean everybody else’s bones have disintegrated faster than mine. Or maybe they changed the standards on the test, I don’t know. The DEXA techie told me my height has increased an inch, too. I think that may be because I was laying down asleep before the testing.
I chew on tender bones hoping to get the necessary enzymes and nutrients needed for bone growth. I don’t take Vitamin D because it increased my phosphorus to above normal levels, and theoretically could do the same to my calcium. My D levels, hence are very low, but I still eat fish when I remember to. Think about this: Black people have naturally low vitamin D because their skin color prevents UV light from passing through; and yet, Black people have the highest bone densities of all people. Also I do weight-bearing exercise that might be helping.
Like I say, I’m in a special situation. Oh yeah, I used to walk on the bottom of the deep end in the swimming pool when I was younger. Then I started popping up like a cork when I guess I had my osteopenia. Very hard to swim well when you float like that. I haven’t been swimming since.
I was just prescribed Forteo last week, needless to say I was having serious trepidations re: filling the prescription, talk about timing, I will not be filling it, I have read about gastrointestinal issues and suffer from hiatal hernia, which I had informed the MD, think I will stick with my current protocol and add Collagen Bone Broth to my protein drinks…thanks all, you have possibly saved me some serious physical side effects and some $.
One thing I forgot to mention. Ultrasound bone re-growth. I heard about it when they used it to grow teeth back in a University lab in Edmonton. I see they have devices selling from different manufacturers.
Wonderful to have these brain-storming sessions, Cort
This is such an excellent and timely piece Carol, thank you so much! I so hope you find a way forward that gives you both mobility and lessened pain. I am 53, and was diagnosed with osteoporosis in my 30’s, prior to the advent of ME. My mother had it too, and the same kidney condition, medullary sponge kidney, often with high blood calcium levels. After years of ME, my osteoporosis is now considered ‘severe’, can’t remember the numbers, but I have so far declined the bisphosphonates. I had surgery on my jaw bone and feared osteonecrosis of the jaw. I’ve been on liothyronnine for four or five years, which got me from bedbound to functioning but ill, but the rheumatologist is keen for me to stop it. I haven’t seen much downward movement on dexa since I started with the thyroid meds, just a little. I take D3, K2 and strontium. But really, my head is in the sand, and your eloquent telling of your experience will help me get it out again.
Have any of you tried a new supplement called TruBone Complete? I just got an ad for it today and it sounds interesting. I like the idea of the milk protein that is in it.
But it also contains a bunch of herbs, so I’m not sure if it would be right for me, personally. I’d be interested to hear what people think of it who have tried it.
Oh, here’s a link to the page about it:
https://www.truehealth.com/NTBC/TruBone-Complete
FORMULA
My mother has osteoporosis. She had taken alendronate for 7 years. But, earlier this year she had one injection of Prolia, with bad side effects, the doctor wants her to take another one but I disagreed. 8 weeks ago a friend at work, introduced me to Best Health Herbal Centre, after telling her my mother’s problem. I ordered 2 bottles of Osteoporosis herbal formula from Best Health Herbal Centre, which my mother only used for 6 weeks and the result was extremely marvellous and my mother osteoporosis was totally reversed. Am so happy to see my mother happy again.
I was diagnosed with Osteoporosis and Adrenal Insufficiency(AI) in the fall of 2016. I am now steroid dependent due to AI. I’ll be 59 this Dec 2018. Since last Oct I have suffered many spinal fractures. Im doing natural remedies like Collagen etc. I have also developed kyphosis (hunch back). I have been in estradiol patches, progesterone, Vit D, and magnesium for years. I dont take calcium because it’s within normal range and I fear bad side effects like calcium plaque in the arteries. I think I get sufficient K2 from my diet. Thankyou for this post Cort and Carol I will check into some of the suggestions. Fatigue is a big issue for me due to AI, ME, and 3 HBP meds, so I’m not able to exercise due to that and pain from fractures and the latest is edema of the bone marrow from lifting my dog. I was doing a little better and thought I could lift her and won’t be doing that again.
I started having problems with chronic fatigue after I had Epstein-Barr meningitis when I was in my late 30s. And as time went on I started with fibro, I’ve had issues with some of my skeletal areas I’m now 58 and just started my first dose of prolia a mth ago. My chronic fatigue has more than doubled since the injection my body feels like I’m in a permanent flare. I have no energy whatsoever and in pain. I know my osteoporosis is pretty severe And I’m hearing so much negativity on all those medication’s for osteoporosis. What else is there to do? It’s hard enough with FB/CF. And I also have chronic kidney disease so medication’s are limited as well as seizures. A lot of people are talking about bone broth, I know nothing about that do you just drink a cup everyday? I’m so glad I happened onto the site I’m learning so much from everyone. Thank you
I wonder if OsteoStrong would be a good safe “exercise” for us with mecfs. They have locations near my home.