It’s the Bones, Stupid
The endocrinologist and gynecologist both gasped at the results of my latest bone density scan. “If you don’t do something, you’ll wind up in a nursing home soon,” warned the endocrinologist.
A genetic predisposition plus little weight bearing exercise plus the march of time left Carol’s doctors gasping at how her bones looked
They insist that I take either Prolia or Reclast, heavy duty medications known to either slow down bone loss or rebuild bones. But possible side effects described by the flashy brochures with the pictures of radiant aging actresses, are distressing (flu-like symptoms, weakness – thank you, I already have those) and even hair-raising (osteonecrosis of the jaw), especially for someone who already feels as if she’s suffering from the side effects of something or other. And because these medicines are administered either intravenously or intamuscularly only once or twice a year, who knows how long any side effects might last?
Yes, yes, I know the side effects are “rare”. But after enduring so many difficult and unsuccessful treatments, like most ME/CFS patients, I can easily imagine the worst possible outcome.
My Internet research into the effect of these drugs on people with ME/CFS has resulted only in speculation and a variety of anecdotes:
- One patient (Kia) described pain, nausea and hospitalization after an injection of a bisphosphonate {drug that prevents loss of bone mass}, and another trial with Prolia resulting in two months of nausea.
The news was not particularly good from the Forums
- Caledonia’s mother had osteoporosis and ME/CFS. She tried Fosamax, which was a shot that was supposed to last 6 months. She had a bad reaction to it, which, of course, lasted 6 months.
- Dr. Joseph Mercola, the osteopath and alternative medicine proponent, claims that Fosamax is a poison that will eventually make bones weaker and can increase the risk of ulcers, liver damage and kidney failure.
- Of course, Quackwatch says that “Dr. Mercola’s articles make unsubstantiated claims and clash with those of leading medical and public health organizations.”
- On Medschat.com, Sandy says that her one Prolia injection made her cfs and fibromyalgia worse, and complains of insomnia, muscle pain and weight gain after the dose. In fact, Medschat.com contains 24 pages of unrelenting misery resulting from Prolia side effects in generally healthy women.
On his website endfatigue.com, Dr. Jacob Teitlebaum describes the FDA alert on the possibility of severe pain after taking bisphosphonates (Reclast):
“The severe musculoskeletal pain may occur within days, months, or years after starting a bisphosphonate. Some patients have reported complete relief of symptoms after discontinuing the bisphosphonate, whereas others have reported slow or incomplete resolution. The risk factors for and incidence of severe musculoskeletal pain associated with bisphosphonates are unknown.”
Enough, already. Am I more fearful of increased incapacitation and pain resulting from a conscious decision to take these meds, than of snapping or melting bones and a bed in a nursing home? I don’t know! It’s the old ‘damned if I do, damned if I don’t’ conundrum. The old ‘out of the frying pan into the fire.’ Help! I’m trapped in cliché land.
Possibly broken bones vs possible side effects- what to do?
I recently visited Dr. Kate Thomsen (see an earlier post; she’s the hugger in Pennington, NJ who practices ‘integrative medicine’) looking for alternative osteoporosis treatments, and she has me taking a VERY EXPENSIVE supplement from Xymogen, OSAplex MK-7 which contains Calcium, Vitamin D3, Vitamin K2, Phosphorus, MCHC (microcrystalline hydroxyapatite concentrate, which I Googled and found “Mean Corpuscular Hemoglobin”, “Mother and Child Health Coalition” and “Metropolitan Collegiate Hockey Conference.”
Actually, I did find that it’s some kind of bone food.) and Choline. With postage, it comes to $91.69 a month! I’ve also just added Strontium Citrate from Complementary Prescriptions, a bargain at $23.91 a month.
Of course, I’ve been taking calcium and vitamin D for years and years, and still have sad weak bones. I also recently read an article in The Journal of Bone Metabolism describing studies that show “there is little substantive evidence of benefit to bone health from the use of calcium supplements” and recommending “the targeting of safe and effective anti-resorptive drugs to individuals demonstrated to be at increased risk of future fractures.” (JBM, Feb. 2014)
So what’s “safe and effective” when you have ME/CFS????
With a genetic predisposition to osteoporosis, and now in my 15th year of ME/CFS, a condition that prohibits weight-bearing exercise, which we are constantly told is a big factor in preventing bone loss, I seem doomed to brittle and porous bones. Apparently unloading the dishwasher or folding some laundry doesn’t help much to promote bone formation.
Dr. Rey, her ME/CFS doc, offers a third way.
Newsflash: I just returned from my yearly visit to Dr. Irma Rey at the Institute for Neuroo-Immune Medicine at Nova Southeastern University and, of course, I asked if her ME/CFS patients took either Prolia or Reclast. She surprised me by replying that they did, and by supporting the catastrophizing of the endocrinologist and gynecologist. “You don’t want to suffer broken bones on top of everything else,” she advised, but seemed evasive about side-effects.
She suggested I try a course of Forteo, another osteoporosis drug that is injected every day for two years. That way, any side effects I might experience (hopefully) won’t last as long after stopping the medicine.
A shot every day?! Ouch, ouch, ouch. Two years worth. 700 days.
I guess I can do that. I won’t like it, but I can do it.
I’m still ruminating.
- Check out more of Carol’s blogs from her Chronic Fatigue Syndrome: A Chronicle blog series
I’m sorry, but I would take my chances on fractured bones over medicines that ridiculously expensive and full of gloom & doom side effects. As a ME/CFS and FM sufferer, I can barely function so e days without the additional stresses that those medicines could cause. I use to be optimistic and adventuresome with new medicines, no longer.
I agree. Especially since after taking those meds, one has to sit up for 1-2 hours! I can’t ever sit for that long.
I would be careful about citing anything from Dr. Teitelbaum, as he has proven in my opinion, shared by many, a dangerous physician and once commented on Dr. Oz that CFS was a quite easy disease to treat. Unbelievable comment.
To round this out a bit – many people on this blog have also stated Dr, Teitelbaums protocols have helped them significantly. He’s quite a polarizing figure 🙂
I am in a similar situation and have found an enormous amount of excellent information via the osteoporosis section of http://www.inspire.com: http://www.inspire.com/groups/national-osteoporosis-foundation/
This is not just an aging issue and exercise is not a magic answer. There are many members who were very active and exercised more than most people but who still got osteoporosis. There are also many young, and youngish, members who have osteoporosis due to a combination of genetics and other factors. Much less is known about bone metabolism than I thought but much more can be done, aside from drugs, than I had imagined.
You don’t have to reinvent the wheel. Check out the forum.
Best of luck to you.
Carol, I had tried the other drugs (not the six month injections though for the reasons you stated) and could not tolerate them because of the side effects. I started the daily Forteo injections the beginning of January and didn’t start experiencing side effects until the third week, which included nausea, headaches, stomach and abdominal pain, muscle pain and weakness, joint pain, leg cramping, low back pain and sciatica. All of these gradually went away after a few weeks except for the stomach issues (I have taken Nexium for years) which continued to get worse. I did the injections for four full months, then stopped them to let my stomach settle down. Six weeks later (actually last weekend) I ended up in the ER with what they originally thought was a ruptured appendix but turned out to be either severe gastritis or ulcers and I’m now taking medication for bleeding ulcers. Obviously I won’t go back on the Forteo, at least not until my stomach has healed. Even then, I MAY try it every other day instead of daily and stop immediately if the stomach issues come up again! In the meantime I’ll increase my Vitamin D to 5,000 per day and follow Dr. Mercola’s suggestions who, by the way, is not a quack but way ahead of his time!
A good site to check medication side effects is askapatient.com The injections themselves are painless as they are very tiny needles much like insulin injections. You may not experience the same side effects and it’s probably worth an attempt as the Forteo is a synthetic parathyroid hormone that supposedly actually builds bone whereas most of the other medications are more to prevent further bone loss. Another consideration is that I was told Forteo is not covered by Medicare but my BCBS plan does cover it. You can contact the company directly at forteo.com and see if your insurance covers it and if you can get a Forteo patient card where you only pay $50 per month for it. The cost of the medication is normally almost $1500.00 per month which is outrageous! They generally give you the first month free when you go through a training seminar (a couple of hours) to learn to give yourself the injections. You might be able to tell after that first month how you’ll do on it. Dr. Rey is also my doctor, but my rheumatologist is the one who put me on it and set up the training session. Good luck with whatever you decide after you “ruminate” on it for awhile.
There is an alternative to pharmaceutical drugs and nutritional supplements for treating osteoporosis. It is a low intenstity vibrating device called LivMD developed after years of scientific research led by Dr. Clinton Rubin professor and chair of the Department of Biomedical Engineering at SUNY. Ten minute daily sessions have proven to be effective at preventing and reversing osteoporosis and assisting in the treatment of other muscular skeletal conditions. This is a great modality for persons with CFS & FMS who cannot exercise. You can purchase a home device for $2,000. For more information go to: http://www.marodyne.com
There lots of whole body vibrators that can help not only with osteoporosis but pain and muscle strength. One example is Hypervibe (http://us.hypervibe.com/) .
There is a product called Calcios that is all natural and easy to take. Just spread it on a whole wheat cracker 3 to 4 times a week. I improved my bone density nearly 10 percent in 9 months. It is available on Amazon and other sites. Google it for proper directions. Good luck.
In Australia, we have constant advertisements on TV advertising the potential for Osteoporosis as we age – hence the need for people to take a complete calcium supplement – men & women. I’m talking about a supplement that has the corresponding appropriate amount of magnesium, zinc and other associated vitamins/herbs for bone health.
In general, most people in the western world live a relatively sedentary life, so it’s not surprising that CFS/FM sufferers have a higher predisposition to osteoporosis with their inability to do weight-bearing exercise.
Fortunately, when I became aware of my stomach problems with dairy in the early 1990s and gave up the bulk of my dairy consumption, I also took the initiative and started taking 2 x 250mg of calcium and made more effort to walk regularly. Some years later at the age of 45 I increased it to 3 x 250mg and continue to this day. I eat a diet high in fresh foods which also have small amounts of calcium. I also tried to do regular walking and some other exercises (for my spine and disc disease).
And despite back/hip/shoulder/arm pain since 1980 and the final diagnosis of FM in 2006, I still make the effort to move and/or walk regularly. When I had to take early retirement in 2010 due to pain, exhaustion and other chronic ill health (besides CFS/FM), I made the concentrated effort to do some sort of exercise.
Initially, I had chest pain and fatigue after about 20 metres walk and had to come home again (in those days), but I persisted and after 2 months could walk slowly (making regular stops for a breather as I have severe Hypertrophic Cardiomyopathy and have to keep my heart rate low) and to this day I can still walk slowly for 2-3 hours at a time.
I can manage 2 days in a row, sometimes 3, but never 4. I can’t walk as often due to an old ankle injury and chronic inflammation and pain in my right ankle. 3-4 afternoons outdoors in a row creates too much fatigue and several days of back/foot pain. But my point is, that while I’m lucky enough not be bed-ridden or house-bound these days now I’m getting enough restorative sleep and pacing my day, I still try and keep active, getting up from my desk chair for breaks and not sitting constantly all day.
Most females lose bone density as they age and by my age (of 60), their bone density has decreased by at least 15%.
A bone density test in May 2002 showed I have a bone density of 94% – excellent for a Caucasian female in her late 40s.
So with all the publicity about osteoporosis and the need for calcium supplementation and weight-bearing exercise, why don’t all ME/CFS/FM and chronic illness sufferers take a calcium supplement (at least)?
And if there is a predisposition to Osteoporosis in the family history, even more reason to attend to this requirement.
I know many of you are bed-ridden or at least couch-bound, but what about those of you who can manage a little cooking, a little shopping and some simple, very basic housework?
I have a very frugal lifestyle and only the most basic fresh food diet now (for the maximum nutritional intake) on a Disability Pension, but I still take calcium and fish oil (as well as B12).
It costs me $401 per year for my calcium tablets.
Drugs can’t restore bone density. They can only stop it getting worse. I have a friend on drugs and doing an exercise class twice a week to try and stop her diagnosed osteoporosis getting worse. She’s 70 now.
But when I asked her what calcium supplement she was taking, she said none. I asked why not (since she’d been diagnosed). She said the Doctor didn’t tell her to!
She’s intelligent and highly educated and for the life of me, I cannot understand why she hasn’t used her initiative to take the appropriate supplement. She still works part-time, is financially secure and owns her own home. She has excellent financial security and a little income.
Most people with chronic illness are informed and (often self) educated about their condition, so why isn’t everyone taking a balanced calcium supplement? Isn’t it better to spend your limited financial resources on something as a preventative, rather than on other things.
How many of you reading this post are going to research and check out the appropriate calcium supplement now that these hideous chronic conditions have left you unable to do any exercise?
How much do you spend on drugs, treatments and expensive tests? (and not on a fresh, healthy diet and a few supplements). If you have the ability, why not walk around your house or yard 3 times a day. Even that amount of movement is beneficial.
Exercise doesn’t have to be going for a brisk 15-30 min walk or lifting weights at a gym.
Exercise is about movement and keeping the lymphatic system moving (to expel toxins and body waste).
There are some schools of thought that say Calcium isn’t the beneficial mineral it’s widely believed to be and recommend magnesium instead. Could be why your friend’s doctor didn’t recommend it.
You need both, Sara. But they must be the right proportions (according to my research).
I would never take Calcium on it’s own. Ever.
My friend, both being much older than myself and having an older practitioner (who may have been more concerned about dispensing prescription drugs promoted by the Drug Companies), might have even presumed that a Complete Calcium supplement was a waste of money – given that she has severe osteoporosis already.
But I genuinely believe Treatment must include weight-bearing exercise, Vitamin D, Magnesium & Herbs with the Calcium in the right proportions.
My point was mainly that exercise, healthy diet & a selection of the right supplements can help. Strong bones in old age are not in my family history so I believe my regime over 25 years has contributed to good bone health without resorting to expensive and possibly toxic drugs.
Carol’s added malaise no doubt enlarges an already heavy burden. I hope she digs deep within and endures the efforts.
After progressively getting worse over nearly 30 years, I can say that ‘enduring’ becomes philosophical, not just a matter of putting up with the medical ambiguities. The challenge becomes finding purpose daily rather than pining over the changes and losses. Plus, the earlier isolation turns to downright loneliness as we look back from what has to be uncertain late phases of ME. Coming to terms with Now AND an ambiguous future is a challenge. I think it’s doable but to borrow from a worn academic phrase it takes a real ‘paradigm shift’ in perspective(s)…letting go of the old ways and making a new way… .
BTW, IMO, Dr. Teitlebaum should not be quoted on reputable sites. His early cure-CFS books and relationships with scam-like clinics lessened his credulity. No way, IMO could he have experienced CFS aka M.E. which he claimed to overcome and worked the grind of an entrepreneur. Success with ME lay elsewhere – not in concocting cures for dollars.
So timely!! I have had CFS/ME for 35 yrs and also have osteoporesis. Kaiser has suggested yearly Zometa. I am fearful at this time.
Keep the dialogue going
Best to all,
Wendy
Quackwatch is the Quack, paid by Big Pharma. The Fosamax (class of drugs) recycle old worn out calcium that your body doesn’t want and produces a very weak and brittle bone structure, according to Dr James Winer. There are special calcium supplements that do the job at a very reasonable cost. I would find a good herbalist and an acupuncturist to help out. I am not anti-drug, only when they actually do more harm than good, which is all to frequent.
Have you tried 1000mg of cheap vitamin C every 4 hours, to bowel tolerance, as per DR Martin Gallagher MD? Every day. One of the corner stones of his protocol. If there isn’t a SAFE drug regimen, then employ as much Naturalpathic modalities as possible. You have no choice. RP
I hate rock and a hard place position we are faced into with this disease. My sympathies are with you. I have become hyper sensitive to medications I understand your fear. I also tend to mistrust even my most trusted docs, when they tell me I won’t have a reaction, then when I do they blame the patient. No good answers for any of us. We must keep fighting for more research. Best outcome for you.
My point of view is that I am going to die one way or another, and that losing one thing or another on the way is inevitably going to part of this. However, I will not voluntarily accept drugs or undergo treatments which make me feel sicker. If some drug makes me nauseated or too tired for any real quality of life, I am not taking it. I don’t care if it supposedly treats cancer, osteoporosis or any other possible threat. I don’t care. I will be leaving one way or another, as I said, and if making myself nauseated and excessively tired every day is the price of possibly reducing the threat of something else by a minor percentage, a threat which may never even materialize, I am not buying this. We in this culture are so afraid of death or certain illnesses and conditions which are supposedly real and important vs the actual life-depleting one we have, this is not a bandwagon I am getting up on.
I tried the once-a-week Fosamax generic pill and it made me continually, excessively tired all week. That was the last time I took it. The end. I have not brought up the subject of my bones since and if my doctor remembers them, I will be brushing aside that concern. I am so sick of conventional fears and “concerns”, and their remedies of very uncertain merit.
100% with your comment, Cecelia. At 65, after having stopped all médications except something to sleep which controls my restless legs – a four-day top and bottom gastro had me mostly weaned of everything and it was easier to stop than if it had not happened – about two years ago, I want nothing to do with most médications. With many musculo-skelettal problems and a shoulder X-ray (10 years ago) that prompted the radiologist to mention further study into possible osteoporosis that my doctor didn’t bother to follow through, I’ve decided to let nature take its course. Most days other than painful rainy days, my restless legs take me out to walk, sometimes only a short walk, sometimes a few hours in my favourite nature park, taking photos, enjoying the beauty of the site. No shame in using a walker because it leaves me with less pain than the unsteady balancing gait without: it is also great to carry errands in its basket.
Headaches and nausea? Aspirin and ginger…
BRAVO! SO NICE TO HEAR SOMEONE AGREES WITH ME! I HAVE ARTHRITIS & PUTTING OFF SURGERY!! I REALLY SHOULD GIVE IN & GET A WALKER. SO I HAVE A PLACE TO SIT, AS I GET EXHAUSTED & OUT OF BREATH QUICKLY, WHICH DOES NOT INSPIRE GOING FOR A WALK!! I’M 69; CS FOR 12 YEARS & TAKE VERY LITTLE MEDS-PREFER THE HOLISSTIC APPROACH & USE ESSENTIAL OILS, AT LEAST WHAT LITTLE I CAN AFFORD.
carol-do a study on magnesium. without the proper amount of magnesium to work with the calcium you can not build stronger bones. you can take all the calcium in the world and it won’t help at all without magnesium. most of us are deficient in mag. these days and it is crucial for so many functions in our bodies.
I agree Marta.
It must be a complete calcium supplement with everything, especially Magnesium, in proportion.
Hi Carol,
I haven’t read the above comments yet, but I am in your position 16 years sick with really bad bones. I have a great bone endocrinologist from UCSF who understands my condition as well as possible and he advised me against Prolia and Reclast due to possible side effects and my condition. For me I am (when the time comes) going to try Forteo. My mom took that for 2 years and it really did help her terrible bones. I think the side effects are the least with Forteo and as you say any once per year or twice per year injection will have side effects for as long as the drug lasts. I would NEVER want to do that you’d have to 5150 me and force me I’d be so scared. That’s just my opinion mind you. Its hard enough dealing with our condition who needs to add a horrible big pharma drug. You could maybe consult by phone with my doc? If you’re interested feel free to email me at: sandrahamburg22@gmail.com
I really feel for you!
Sandra
Hi again I forgot to say that I have been using the Juvent vibrating plate daily for 4 years now. I did pay $2000.00 for it, but I would do anything to not take bone drugs. They say after two years your bone loss should slow down and after 4 it MIGHT build some. I had a bone density test after the first 2 years of use and for the first time in years they said my bones were the same as the past scan. I have no idea if that was just because my rate of bone loss was slowing due to age? I started the plate daily at age 56 and was scanned again at 58. I did discuss it with my bone specialist before purchasing it, and he said he knows the guy who invented it and I should buy the Juvent brand. It was made for NASA for when astronauts come back from space and have bone problems. I’m just passing this information along. There are probably other versions by now of the vibrating plate. This one was also recommended because the vibration is VERY minimal. It doesn’t shake you up a lot its very subtle. I have to stand on it 20 minutes per day thus I became a T.V. person and watch something while I vibrate away! It counts the number of times you’ve used it so I have used it 1446 times so just short of 4 years. Next time I have a scan I’ll see how I’m doing. I’m 61 now so I figure I have a little while before my doctor starts screaming at me as yours did, Carol
Hope this is a little bit helpful. Good luck deciding its really really a tough spot to be in and I totally sympathize and empathize with you.
Sandra
The Juvent device is the predecessor of the Liv MD invented by Clinton Rubin.
Research has shown that weight bearing exercise is helpful for preventing osteoporosis but what Rubin discovered was that it is the specific vibration set in place by exercising that produces the benefits. His technology is based on solid science and 25 years of research and in fact works as well or better than pharmaceutical drugs in treating osteoporosis. (Of course Big Pharma doesn’t want us to know this and is much better at reaching out to the medical community). Rubin was dissatisfied with the company that produced the Juvent platform. He found another company Marodyne to produce platforms with his technology. He worked for a number of years to perfect the new device called LivMD. I was on the waiting list to purchase one of these for 3 years as Juvent had in the meantime discontinued manufacturing them. Rubin is very pleased with the new product but I’m sure the Juvent platforms produce the same therapeutic results. The price is pretty similar – close to $2,000. For more information go to: http://www.marodyne.com
Thanks Darden, I’m going to look into this as I’ve had “senile osteoporosis” since age 58. (I looked it up and it’s found mostly in those over 70.)
Please somebody, do some research about taking vit D, Vit K, magnesium (in the transdermal form if you can’t take it orally) and minimal amounts of calcium. Silica is helpful, too. GreenMedInfo has good info as does Mercola.com. And then write it up for the others. Sorry I can’t offer to do it. Vit. K is a big key. It puts calcium in the bones, and not in the arteries and other places where you don’t want it.
Please read “The Magnesium Miracle” – Dr. Carolyn Dean before taking the prescription drugs or even continuing to take calcium.. It explains the relationship between Calcium and Magnesium and bone health. I have been taking Magnesium Glycinate for years because CFS/Fibro patients are chronically low in this mineral, it rolled back the fibro fog for me and helps with muscle and joint pain. I didn’t know about all the other things it does including bone health. Amazing read!
I was first diagnosed with osteoporosis in my mid-30’s, am now fifty. Both my mother and I have (had in her case) medullary sponge kidney and fluctuating blood levels for calcium, and kidney stones. She died of breast cancer, but also had ME. I have refused bisphosates, already having osteonecrosis in my jaw. I have recently been offered raloxifene, for both bones and cancer risk. My ME doc reckons I shouldn’t take it; but stick instead with Vit D, K, and strontium sups. I won’t take calcium because it clearly isn’t helping with calcifying kidneys, also understand a large scale nurses study showed it added risk re coronary heart disease and formation of arterial plaques. Don’t have link, sorry.
Like you, am not sure of way forward.
Hi, If I may suggest something. Get a GI work up to make sure that in addition to ulcers which are caused by bacteria and treated with antibiotics that you don’t have IBS or SIBO, also caused by bacteria and treatable with a gastro system only antibiotic Xifaxamin or Rifaxamin. Dr. Mark Pimentel at Cedars-Sinai did definitive research on this topic and it gave me a big improvement in my ME symptoms. Check out Esther’s story on Health Rising. Perhaps if you treat your gut, you will be able to tolerate treatment for your osteoporesis.
I am 43, YESTERDAY I fall and broke my ankle in two places my knee in two places and my hip. ME or no ME can I tell you take the damn supplement so you don’t have to sit in a casualty being abused for taking gabapentin for pain, which according to them means I cannot take ANYTHING ELSE.
To: Esther Siebert
From Sheila
Just wondering how long you did the xifaxin? I was put on it for Sibo and did feel any better on it. Maybe I did not stay on long enough. I actually brought the book to my doc and asked her to test me for SIBO with the breath test and did come back positive, but I know she did not follow things the way Pimentel did. If you could share that with me I will decide if I want to ask for a longer trial with it, if that was the reason it did not work.
Thank you,
Sheila
Science has discovered that there is a relationship to bone health and the immune system. (http://www.ncbi.nlm.nih.gov/pubmed/16313351) Since most of us have a weak immune system I would think that osteoporosis is another side effect of having ME/CFS. Last fall I saw a osteo-immunologist in Boston and he didn’t seem to know if Reclast would work without an active immune system. Obviously a lot of research needs to be done.
I take Better Bones by New Chapter since the calcium is from plants not sea shells. I also take a bio-identical hormone cream morning and night. I have not had a recent bone scan to see if either are helping. I also do balancing exercises on a bosu ball at night. A good $10 investment to help us with muscles and it isn’t too strenuous for me.
My Mum took bi-phosphanates for only a year because they caused too much pain and I found out through the internet they are used elsewhere as some kind of detergent!I suggested she take olive leaf extract because this herb is meant to build bone in the same way as the bi-phosphanates but she stopped because it was causing the same type of pain only duller than before.So now I am taking them instead of her and am eating my cheese.
Medical Consumers.org says that Fosamax can cause spontaneous fractures of the thigh bone:
http://medicalconsumers.org/2010/03/22/4717/
Couple of things more natural I use or have used: vit d3, strontium, red clover, and from Integrative Therapeutics – OsteoPrime Forte. Last one improved my bone density back to normal. Also, low fat, vegan lifestyle.
Many ME sufferers are deficient in magnesium and I wonder if the lack of benefit from the supplements is caused by taking calcium without magnesium. Calcium supplements should also be taken in divided doses, not all at once. Live yoghurt is an excellent way to increase calcium and vitamin D levels.
The most natural way to take care of your bonedensity is to eat fermented food, especially natto, fermented vegetables and kefir. Ideally, all should be home made (no pasteurisation involved).
In connection with “vibration devices” mentioned above:
A beter solution in my opinion is andullation therapy ( see hhp.be)
An andullation matras has been proven to help with FM for me and is probably helpfull with bone problems also. I don’t know if they are sold outside europe. They should.
You don’t need any of that. Try a low dose of DHEA – say 3 – 5mg per day.
It would be great to have an ME/osteoporosis thread on http://www.inspire.com. I have been a member here, under a different name, for many years but find that the members on Inspire have done so much of the osteoporosis work already that I would be foolish not to take advantage of their wisdom. I would love having others with ME to discuss the specific issues ME presents re both medication, which I have declined at the moment, and supplements, many of which are supplements previously discussed in the ME community. I have commented here with this user name as it is my user name there. If you join the forum, please let me know. Having had 3 fractures, as a result of falls, in 18 months, I can tell you this is not something you want to ignore.
Best of luck to everyone!
My rheumatologist was surprrised that my bones were very much better after a year of eating sardines with their bones every day for lunch. On buttered toast and with tomatoes, they are delicious and cheap to boot.
I’ve been diagnosed with CFS that flared in 2008. In 2009 I started seeing an anti-aging specialist (Google A4M to find a specialist in your area) who prescribed bio-identical estrogen (bi-est). He told me that it would help my bone density among other things. He is expensive, and I don’t know what the estrogen by itself would have done for me. However, in 2011, I started on the GAPS diet and also started Pilates private sessions with an instructor who understood that my abilities were very limited at first. I go for a session once a week and at first could do only 15 minutes of the exercises in an hour. The rest of the time, she rolled my muscles with a foam ball. I know that this exercise has helped me a lot as I can now do a whole hour of intermediate exercises. Again, this is expensive and has taken time for me to get where I am now.
However, I believe what has really helped my bone density without drugs has been the GAPS/Weston A Price diet. They are similar as GAPS is a specialized diet based on WAP. The most healing food in both diets is bone broth. You simmer grass-fed, drug-free bones in a crock pot with veggies to alkalyze your system and put in ALL the minerals your body needs to build bones. My bone density tests really improved dramatically once I started consuming this broth on a regular basis. You can use chicken, beef, lamb, buffalo or a combination of bones. You can go to Thehealthyhomeeconomist.com to find the recipe for bone broth or stock. The technician who does my bone scans says that my results are the most impressive ones he sees, even from women who take estrogen and exercise a lot more than I do and are younger. Even if you use plain marrow bones from the grocery store that are not grass fed or free of drugs, you can benefit. I wish you the best in your efforts to improve your health.
I am surprised that nobody has mentioned the role of estrogen in maintaining bone health. Obviously it has to be very low dose and preferably in the form of a gel or cream. I am 66 years old, have had Lymes disease since 1996 but only recently found this out as I was told it was ME/cFS but I have always stayed on just 0.75 mc estrogen which supplies the bioactive estrogen our body’s made when we were younger.
I feel that these problems of osteoporosis have not been helped by doctor’s attitudes in general to HRT. They lump all HRT together whereas bioidentical hormones are very different especially when used in low doses. Obviously a form of natural progesterone is supposed to be taken but for some reason my steroid pathway must be messed up because I have a naturally high level of this and cannot tolerate any extra so don’t use it. I have no problems at all with thickening of the endomentrium perhaps because so many of my hormones would have been on the low side for many years because of HPA hypofunction.
Also I take dessicated thyroid which has T3 and I have been on steroids for 12 years now so all the GPs I come across think I must have very bad bones. In fact I had a DEXA scan 4 years ago and was told I had the bones of a woman in her 30s.
I believe this is because of all of the above and the fact I have taken lots of magnesium for at least 12 years and have always eaten foods quite high in calcium. I also eat lots of green vegetables every day and have good amounts of protein and fats. I really don’t want to take any medication for my bones as I tell my GP every year. I want to do it the natural way with lots of good food and good supplements.
– My bone density took a rapid down turn a few years ago, no family history.
– During a Routine Follow Up Test for medical study I have participated in for 15 years, I showed unexplained very high levels of CPK enzymes with no recent muscle injury, activity, or heart attack. Mystery problem possible unknown side-effect of medications. The levels turned to normal soon after stopping Asmanex and Flexeral medications.
-During the next Routine Follow Up Test for the medical study…., I had elevated parathyroid levels, elevated serum calcium levels, and a longtime history of hypothyroid (low) along with tiny nodule on thyroid that had been watched for years.
– However, I had recently began increased dosage of supplements for both Calcium and Vitamin D (prescription de jut that year).
Turns out like many other ME/CFS patients I have issues with my glands (see Dr. Batman’s recent puzzle talk to OFFER). I grew a adenoma on a parathyroid gland. Parathyroid has a complicated relationship with the rest of the endocrine system. Dump more calcium in the mix, more parathyroid was made to compensate. Not enough calcium to absorb the Parathyroid hormone, the bones dissolve. Calcium can redeposit itself on other organs, impairing function and can cause kidney stones. Does this mean I was misdiagnosed with ME 28 years ago. I do not think so. Rather I think we do indeed make a complicated puzzle and most docs do not have time to really ponder our unique situation when they lump us in with the rest of their patient population. Another reason to demand centers of EXCELLENCE for us.
For me, I have decided that enough is enough when it comes to most Western medicines. I luckily am not where you are at with your condition (and am so sorry to read of anybody going through this). I felt that in order to attempt to get my life back was to kiss the pharmaceutical companies goodbye and look at other options. I do take LDN (low dose naltrexone) which I constantly recommend to anybody with an auto immune condition. (Pharmaceutical companies hate it! because it is a) cheap and b) works! (for most people!). I never thought I would say this, but I am looking at the alternative route. I use CBD oil (cannabidnoid – from cannabis, but NOT THC which makes you high – CBD is legal in 50 states and 40 countries btw). I use magnesium malate, potassium and I am looking into fresh CBD juices as well. I was finding that the amount of side effects alone from the meds I was taking was meaning taking more meds for the side effects and dealing with the side effects of those! I feel that there IS help out there for everyone, it just means researching and being open to other options. It also (sadly) means having to pay for it as insurance companies won’t… where there is a will (and the internet!) there is a way! A.x
Alyssa,
I’ve pretty much reached the same conclusion as you with respect to most Western medicines. Fortunately, it seems some physicians are becoming more progressive in their approach, and I am fortunate to have one of them. I was on bisphosphonates for years for osteopenia, later osteoporosis. Initially, my doctor was unreceptive when I expressed concern about adverse effects. A few years ago when it was obvious the “comparatively safer” bone-building medication I had been taking wasn’t halting my bone loss, my physician asked me to search the internet for information on the stronger meds before returning to discuss with her how to proceed. She said the information I’d find was “scary”, and she was correct. She fully supported my decision not to continue treating this condition with pharmaceuticals.
Same situation with my cholesterol medication, which did keep my blood test results in the “normal” range. When I first expressed concern about statins a few years ago, my doc was vehemently opposed to my stopping them. But, earlier this year when I suggested going off the statins for three months to see the effect, it was my doctor who suggest a six-month break. Despite my cholesterol levels going up, she recommended monitoring the situation rather than restarting the medication. So, it seems there are positive changes happening with respect to the practice of “traditional” medicine.
Karen
I had a bone scan somewhere around 2002 which showed osteoporosis and osteopinea. My doctor, Dr. Leo Galland, suggested taking strontium. I have been ever since and have actually improved a little according to my bone scans.
It’s interesting that I had been bedbound (no sitting, standing. walking) for 12 years and I only had middling osteopenia where others that walk say 1,000 steps a day may have osteoporosis. My bones seem good, considering being in a zero-gravity position fir that long (though my teeth are crumbling).