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How to treat osteoporosis when you can't exercise?

Discussion in 'General ME/CFS Discussion' started by LaurelW, Jan 19, 2018.

  1. LaurelW

    LaurelW Senior Member

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    I've just been diagnosed with osteoporosis after getting a stress fracture in my foot and having a DEXA scan. Since I can't do aerobic exercise, the doctor wants me to take a bisphosphonate drug. I can't tolerate Fosamax or Boniva due to horrible heartburn side effects. So she suggested Reclast. It's a once a year infusion. It has a 50% side effect rate, but I believe most of those are gone after a week.

    Reclast lasts a year after each infusion, so if the side effects last, there is no antidote to them. On the upside, 30-40% bone mass gain often happens within 3-5 years.

    One of the common side effects is bone pain. I already have constant fibro pain at a 3-4 on the pain scale, but could tolerate more if it was temporary.

    If I don't take this drug, I'm wondering if doing strength training while keeping my heart rate down would be enough to make a difference. I already do exercises for my back, and could add some long-bone strengthening. I take plenty of calcium/magnesium/D3.

    I've also heard about some vibration plate that you stand on that's been studied in Russia.

    Breaking a bone and having to take opiates is not an option, since I've already been through opiate dependency and withdrawal after surgery once. It was the worst experience of my life.

    Any experiences, ideas, or suggestions would be much appreciated.
     
    Last edited: Jan 19, 2018
  2. Eastman

    Eastman Senior Member

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  3. HowToEscape?

    HowToEscape? Senior Member

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    I’ve seen recent studies that say that unless one has a deficiency D3 and calcium don’t help to reverse or prevent osteoporosis. The one combo studies found that helped was a combination of good normal diet and weight bearing exercise.

    It’s frustrating; I have bone loss myself and am now very limited in exercise tolerance. I’m also a rather poor chef and don’t know how to make healthy greens into something that I will actually eat. I find their terrific when made by a half decent chef, but I don’t know how to do that offhand and I can’t stand at the counter for very long and experiment, cut chop slice dice combine and then maybe toss that batch and start over.

    Sorry I didn’t bookmark those and I couldn’t tell you how to find them.
     
    Last edited: Jan 19, 2018
  4. HowToEscape?

    HowToEscape? Senior Member

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    @Laurel The strength training sounds like a good bet.
     
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  5. PareshK

    PareshK

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    I'm dictating so this may be somewhat erratic. I do strength training with no adverse effects on the CFS. The nature of strength training of course is that you alternate movement with brief rest periods. If free weights don't appeal to you, you might also consider resistance bands. Also have you considered yoga? There are many forms and ways of practicing besides the impossible looking pictures you may have seen. You just need to look for the right teacher and class. The stretching in yoga puts a stress on the bones causing them to absorb more minerals and strengthen. Do a search for dr. Loren Fishman who has done extensive research on yoga and osteoporosis with very promising results. Good luck.
     
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  6. LaurelW

    LaurelW Senior Member

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    Thanks for all your suggestions. I do take Vitamin K every day, and have done yoga, but only the restorative type, which I suspect doesn't help that much. I will definitely check into other types of yoga. I already use resistance bands a bit, but could do more of that, and would like to do some free weight training. I'm hoping to see the physical therapist I've worked with before since he has been very understanding about the ME/CFS stuff.
     
  7. ahmo

    ahmo Senior Member

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    Also strontium.
     
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  8. Learner1

    Learner1 Forum Support Assistant

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    And boron and vanadium. And getting vitamin D level up to a high normal level, not just the ridiculous 800IUs a day recommended by bone docs.

    My dentist warned me against Fosamax, Boniva, etc. He's seen some dreadful jaw necrosis as a result.
     
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  9. LaurelW

    LaurelW Senior Member

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    Interesting. I talked to my dentist and he said that whenever they have to do an extraction on someone on these drugs, they send them to an oral surgeon. He said the oral surgeon has only had about 4 problem cases in 20 years. I guess they are better at handling this than they used to be.

    I'm still checking out my options, but am concentrating on good nutrition, supplements and some light weight training/yoga for now. I'm going to have to take it very slow because of the PEM, but have found that I can build up over time.

    I have been reading about strontium as well so am on board with that.
     
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  10. lllamamom

    lllamamom

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    If I don't take this drug, I'm wondering if doing strength training while keeping my heart rate down would be enough to make a difference.
    Look for Pilates classes that use the machines--they are gravity neutral when done properly, however allow me to maintain some muscle tone. It may take searching, but it's been wonderful for me
     
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  11. Sushi

    Sushi Moderation Resource Albuquerque

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    These machines are also available in other countries. My gym and one of my doctors had them.
    I decided to take strontium after reading a lot about it. There is a good blog call Better Bones Blog that evaluates all the choices.
    I've also found pilates with machinges to be good but it may be difficult to find a class that lets you exercise at a level that doesn't give you PEM.
     
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  12. mermaid

    mermaid Senior Member

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    Hello @LaurelW I too am diagnosed with osteoporosis, though so far without fracture and working my way through the health system here in the UK. They too want me to be treated with bisphosphonates, but like you I would not be able to take them orally and they are suggesting the infusion.

    I have done much research on the subject since being diagnosed a year ago to find the pros and cons of medication. I am not convinced by any of them, as although bone density can improve, density does not necessarily = strength, where the drugs are concerned.

    People have recommended most of the supplements I am now taking. I am also taking collagen as it's involved in bone building and it does seem to have already made some differences to me, so I am hoping it's helping my bones.

    I feel I should be doing some of the light weight training, plus resistance exercise but don't really know how to start with it and would probably have to do it at home as I don't think there is anything suitable locally.

    I measured myself the other day and found that I had lost an inch this last year on top of the half inch I already had lost when I was measured for the DEXA a year ago. I was a bit shocked, but I know that some height loss is normal. Do you know if you have lost height too?
     
  13. LaurelW

    LaurelW Senior Member

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    I haven't lost any height yet. My spine isn't that bad, pretty normal for my age. It's my femoral necks that are in bad shape, putting me at risk for a hip fracture.
    I was at the doctor's yesterday, and she brought in a pharmacist to talk to me about the possible side effects of Reclast. It turns out that the pharmacist teaches at the local university and is a specialist in womens' health. She seemed to think that going on hormones would bring as much bone mass gain as the bisphosphonates. I was on bioidentical hormones for many years, and went off of them 2.5 years ago when I started getting my period again. That's when I really started losing density. So we decided my best course would be to go back on those, and watch carefully for any bleeding.
    She also said that they haven't really studied hormones and bisphosphonates together, but so far it looks like one plus one does not equal two.
     
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  14. Mary

    Mary Forum Support Assistant

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  15. WoolPippi

    WoolPippi Senior Member

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    How about anearobic exercise? The no-sweating kind. Just take a weight and slowly move it about. Real slow, like tai chi almost. The aim is to tire your muscle in 2 minutes. Then you take a week of rest.

    Aerobic exercise is bad for many of us but anearobic is not a problem. Anaerobic is weight bearing exercise. Also push ups and squats.
     
  16. moochie

    moochie

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    Hi folks - this is my first post, although I have been following this site for several years, and have learned a great deal.

    The first thing I wanted to mention since I don't see anyone else has mentioned it, is that it is unlikely you will break a bone unless you fall or suffer some kind of accident. Maybe this is kind of obvious to people and that is why no-one has mentioned it. So one suggestion is to work on improving your balance, and make sure your home doesn't contain any tripping hazards etc.

    My own experience with osteoporosis is as follows. I was first sent for a DEXA scan in the mid-90's, and told I had severe osteopenia, bordering on osteoporosis. I refused to take bisphosphonate drugs because I did not trust them since they were new - and what I have learned about them since only reinforces my opinion. Side effects like atrial fibrilation, jawbone necrosis, cancer, and even bone fracture(!). Plus there is the controversy as to whether the bone that is built is good quality bone or poor quality brittle bone. From what I recollect, osteoporosis was rarely even talked about prior to the 90's and used to be regarded as a rare disease, and it was only when the drug companies brought out the bisphosphonate drugs that osteoporosis became a big deal. I also read that the drug companies were also involved in setting the criteria for diagnosis with the DEXA scans.

    I was also told by the doctor at that time to start taking large doses of calcium pills, but I found that they caused severe abdominal pain, and stopped taking them. I have since read research that calcium supplements cause increased risk of bone fracture, as well as heart problems.

    It is now over 20 years since I was told I was borderline for osteoporosis - I am 75 years old now and have not fractured any bones. I was very active until I became severely ill with M.E. about 6 years ago, and although I have improved, I am still very inactive. I have had no medical treatment since the doctors here are totally ignorant about this illness, and my improvement has come from rest, pacing and trying to eat a healthy diet. I manage to do some simple stretches, a little strength training with 3 lb weights, and can walk about 15 minutes at a slow pace several times a week.

    Just a couple of books I found interesting: "The Myth of Osteoporosis" by Gillian Sanson (out of print but used copies might be available through Amazon), and "the Whole Food Guide to Strong Bones" by Annemarie Colbin.

    Sorry folks, this has become much longer than I meant it to be, but I hope it might be helpful .
     
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  17. LaurelW

    LaurelW Senior Member

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    Hi Moochie,
    Thanks so much--your answer is indeed very helpful.
     
  18. RebeccaRe

    RebeccaRe Moose Enthusiast

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    For what it's worth, my mother (who did not have ME/CFS and was very active) was diagnosed with osteoporosis in her 50's. She took Fosamax for several years, but the GI side effects were too much for her (and heartburn drugs cause bone loss, so the two drugs ended up cancelling each other out, I guess). So she took Reclast after that for about three years. She had almost no side effects, and her bone density improved a great deal. Even though the medicine works for a while, if there are side effects I think they're only supposed to last for a few days.
     
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  19. LaurelW

    LaurelW Senior Member

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    Thanks, Rebecca. It's good to hear of other women's experiences.
     
  20. Carl

    Carl Senior Member

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    It's already been mentioned but you did not indicate that you were taking or using it.......Boron! If you read about Boron you will find that apart from affecting bones in a positive way, it also affects hormones which in turn affects bones. Therefore a double edged sword.

    Borax is the cheapest source of boron. You would need to check the percentage of Boron in Borax, I have forgotten what it is. BTW Boron can also be helpful in other ways too so that is another reason to make sure you are getting a relatively high dose. I take 12mg/day but even higher is okay, 18mg should be okay.

    You also did not indicate what Vit K2 supplement you were taking, I suspect K2-MK7? That has not been recognised as being helpful to bones, whereas K2-MK4 has been researched and shown to be helpful. MK4 doses do tend to be much higher at 45mg/day.

    Another thing to consider are anthocyanins/anthocyanidins. An Anthocyanin from Blueberries has been shown to prevent bone loss in ovariectomized (OVX) animal models. These plant pigments which are quite largely present in red, blue & black berries have many beneficial properties to health and inflammation. They also strengthen bone and collagen which is a part of bone.

    I have not been diagnosed with osteoporosis but I have broken quite a few bones in recent years, mainly legs but also ribs and arms. BTW the hypothalamus, which is affected in CFS, does affect the bones which is why I have so many problems with breakages because the infection has caused quite a large portion approx 30% destruction of my right hypothalamus and pituitary. I am trying to optimize my nutrition to try and strengthen my bones. I was getting far too little calcium and phosphates until last week. I have now corrected that with calcium ascorbate (calcium carbonate with ascorbic acid->calcium ascorbate and monosodium phosphate) this is a far cheaper way of doing it than purchasing the powdered calcium ascorbate which is extremely expensive for what it is. Plants provide very little calcium and phosphates.

    Something else which might be helpful is a Chinese herb called Tu Si Zi (dodder seed) which affects energy circulation in the kidney and also the legs. It has also been shown to increase the weight of the pituitary in animals and thereby increase the pituitary function. Tu Si Zi can also increase fertility, probably the increased pituitary function having this effect.

    I have been taking this herb for many years. It does lower cortisol levels due to the improved energy circulation in the kidneys and eliminates the cold hand/feet for me.

    There are two negatives, one is bradycardia slowed heart beat below 60 bpm, mine tends to be around 44 to 53 bpm. The other is it tends to cause constipation due to tannins. For me these can be counteracted, at least the constipation can.
     

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