severe osteoporosis

Cindi

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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.
 

camas

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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.
 

Sushi

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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
 

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
 

adreno

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

Most people have heard that they should take calcium and vitamin D to protect their bones. What is lesser known, but equally essential is 45 mg daily of MK4, a form of vitamin K2. MK4 is so effective that a study published in 2006 in the prestigious medical journal, Archives of Internal Medicine concluded that this amount of MK4 may decrease vertebral fractures by 60 percent, hip fractures by 71 percent and all nonvertebral fractures by 81 percent, which is better than all leading osteoporosis medications. MK4 exerts such a powerful influence on bone building that in Japan it's been an accepted osteoporosis treatment since 1995.
http://www.huffingtonpost.com/john-neustadt/its-time-to-change-the-di_b_201401.html
 

free at last

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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 ?
 

Crux

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Helen

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Hi free at last ;

It could be that B12 deficiency is involved, since you are having nerve shocks. B12 deficiency is also associated with osteoporosis.
http://www.ncbi.nlm.nih.gov/pubmed
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
 

Lynne B

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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
 

free at last

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Hi free at last ;

It could be that B12 deficiency is involved, since you are having nerve shocks. B12 deficiency is also associated with osteoporosis.
http://www.medicalnewstoday.com/releases/19895.php
http://www.ncbi.nlm.nih.gov/pubmed/15619681

Thanks Helen, I should have checked this. There are more studies on pubmed, some even refute the connection, but there seem to be more in favor of the low B12 low BMD connection.
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
 

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.
 

Cindi

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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.
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!
 

Cindi

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

Cindi

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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
Thanks Caledonia! Will do bone broths.
 

Cindi

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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 ?
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.
 

baccarat

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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.