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severe osteoporosis

Discussion in 'General ME/CFS Discussion' started by Cindi, Apr 13, 2013.

  1. Cindi

    Cindi Senior Member

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    Hi all

    Not sure if this was right place to ask but do any of the long term sufferers have severe osteoporosis problem. About three years ago bone density scan said that I had lost about 50 percent of my bones. This year I started having severe bone pain that does not allow me to sleep. I have pain all over.I am quite upset as i won't be able to take pain medication.I am sensitive to many medication. I did not use fosamax type medication because of the problems Dr.Mercola states.Can not use d3 as it gives me itching after couple of days. I use cod liver oil about two times a week.I am on about 300 mg ca citrate/malate and 300 mg magnesium at this point. I used Ca MCHA for a while but started developing gout like problems. Not sure if I could not metabolize MCHA. Any insights to my case?
    Thanks.
  2. camas

    camas Senior Member

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    Hi Cindi,

    I'm sorry to hear you are experiencing bone issues. Bone pain and severe osteoporosis can be signs of Mastocytosis. I've come across more than a few masto patients, besides myself, who were misdiagnosed with CFS and FM for years. (See links in my signature for more info).

    I'm 54 and have osteopenia. I don't know if it's from my mast cell disorder, or from being sedentary for 25 years. I'm using a vitamin D light (can't tolerate supplements), magnesium, and Thorne vitamin K2 drops which help move calcium out of the blood and into the bone. I don't take a calcium supplement because it can contribute to further mast cell degranulation, but I do try to get some calcium from juicing leafy greens (gag!) since I'm allergic to dairy.
  3. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Cindi

    Strontium is another approach. Supplementing it has shown promise. I wouldn't want to take any of the fosamax class of drugs either. There is also a drug made in Europe that uses strontium--sorry I forget the name. But it has done well in trials.

    Best wishes,
    Sushi
  4. caledonia

    caledonia

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    My mom (who had ME/CFS) had osteoporosis. 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.

    I've heard you can do bone broths to help out your bones.

    I've made the chicken and beef broth recipes on this page and they turned out delicious:
    http://www.westonaprice.org/food-features/broth-is-beautiful
    camas likes this.
  5. Crux

    Crux Senior Member

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    Hi Cindi;
    I very much agree with everyone here, and would also like to add zinc supplementation as a possible treatment for osteoporosis. Here's an abstract that puts it well :

    http://www.ncbi.nlm.nih.gov/pubmed/20035439
  6. adreno

    adreno 3% neanderthal

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    Tundras of Europa
    Vitamin K2 (MK-4) 15mg three times daily.

    http://www.huffingtonpost.com/john-neustadt/its-time-to-change-the-di_b_201401.html
  7. free at last

    free at last Senior Member

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    I dont know but i am presently getting a scan soon because i am getting sever bone pain that started in my right shoulder. slowly got worse over about a year, spread to my left shoulder. And is now getting so bad, i am getting sever stinging shocks when i move a certain way or if i stretch, like in the morning or at night. at this rate, i will lose my abillty to function with normal arm movements quite soon i think. i am very worried. Worry about bone cancer as it seems to be spreading and getting far worse quicker and quicker. Having a ultrasound in about a week. My ESR blood test ( for inflamation ) was in the normal range i have been told. Ok tell this to my shoulder plz. pretty worried here. I was diagnosed with CFS but the cfs has improved to 90% of normal activety from 17 years ago when the viral attacks led to the CFS/ME diagnosis ?
  8. Crux

    Crux Senior Member

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  9. Helen

    Helen Senior Member

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    Very interesting as so many have problem with genedefects that causes functional B12 defiency if not treated - but the link goes only to Pub Med, not to a specific study ;-). Thank you if you could send a link to the study /Helen
  10. perchance dreamer

    perchance dreamer Senior Member

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    Hi, Cindi. Have you ever looked at the Better Bones site? I think it's a wealth of information for approaching bone health in a natural way.

    I see that Dr. Brown does private consultations. It might be worth looking into.

    http://www.betterbones.com/default.aspx
    camas likes this.
  11. Lynne B

    Lynne B Senior Member

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    Hi, Cindi, Thanks for this information about vitamin K2. Both my husband and I have osteoporosis. He gets a lot of back pain and I've had one broken bone already, so this could be very useful. I'll see if I can find it from an Australian chemist and add it to existing supplements of Actonel and Caltrate and D.

    cheers, Lynne
  12. free at last

    free at last Senior Member

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    Hi Crux thanks for the link, and the info. Hope this conversation is also helping Cindi. Just wanted to share whats been happening to me as she asked the question of other members
  13. caledonia

    caledonia

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    I would also like to add, that there is some recent research implicating SSRIs/SNRIs with osteoporosis. There are serotonin receptors in your bone marrow and the drug goes in there and screws things up. Even if you discontinue the drug it will take a year for the drug to come out of your bones.

    Note: if you do decide to discontine any psych meds, you should taper extremely slowly or you may get a horrendous withdrawal syndrome. Don't reduce any faster than 10% of the previous dose every 3-6 weeks. Your doctor will likely be unaware of this and give you too fast of a taper schedule. Speaking from direct experience...I'm on my second attempt at a taper; it's going to take 2-3 years.
  14. Cindi

    Cindi Senior Member

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    Oh my! This is first time I hear about this disorder.It seems to be a complicated issue.Thanks so much for all detailed info you have given. Will check the info.It is strange that I also might be having problems with calcium. Since I started taking it regularly(together with mg) I developed increased joint pain. I was wondering if this had anything to do with my calcium intake.Thanks a bunch!
    camas likes this.
  15. Cindi

    Cindi Senior Member

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    Thanks so much Sushi!. Have added it to my supplement list.Best wishes.
  16. Cindi

    Cindi Senior Member

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    Thanks Caledonia! Will do bone broths.
  17. Cindi

    Cindi Senior Member

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    Thanks for the info Crux.
    I am already on zinc but did not know it was helpful for osteoporosis.Best wishes.
  18. Cindi

    Cindi Senior Member

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  19. Cindi

    Cindi Senior Member

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    I also have similar problems at shoulders so i share your worries.I am also suspecting some oseoarthritis type problem at my shoulders due to limited activity because of CFS.Thanks.
  20. baccarat

    baccarat Senior Member

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    Many good ideas have already been mentioned. I like in particular the b12, k2 and bone broth ideas.
    In addition I'd like to mention the good effect that certain polyphenols have on bone density. The effects of green tea extract ecgc and resveratrol appear quite impressive perhaps because they affect bone tissue in a variety of ways and if I remember, one of those is being studied or used to prevent bone loss in astronauts.

    Bone broths, made properly, have most of the nutrients that one needs for health including minerals. Instead I'm not convinced by the need to supplement individual minerals bearing in mind that we as humans (and animals too) develop and grow our the bulk of our bones without supplementing a single mineral and to me this is an indication that the underlying issues with osteoporosis are others, loss of bone (which you can't stop with minerals), d metabolism and inflammation come to mind.

    There is also evidence that elevated homocysteine correlates with risk of fractures hence the B12 and methylation protocol could help.

    Vitamin K2 is very helpful and should always taken with D but I personally found mk7 more effective than mk4 (although there are interesting studies with a very expensive mk4 brand, pls take a look http://www.eisai.jp/medical/products/di/EPI/GLA_SC_EPI.pdf ) which is not surprising considering that mk7 is the form naturally found in foods and it is better absorbed.
    camas and Cindi like this.

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