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anyone else dealing with osteopenia / osteoporosis?

November Girl

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My osteopenia has worsened since my bone scan 2 years ago. I'd love to hear from others who are dealing with this. I do plan to start walking more, and will adjust my supplements, but there's no way I can do the suggested amount of exercise! I'm not at all anxious to take any of the meds, but I may have to. I just got the results today, will discuss with doc next month.
 

Crux

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Hi November Girl ;

I now have osteoporosis. So I'm having to take more measures to at least stop, and hopefully reverse its progress.
Although I've taken numerous supplements for years to prevent this, I've still gotten it.

But I've figured out a few things that may have caused this condition, so maybe this can help. It looks like zinc deficiency has been a predominant cause in my case. I learned about this from comparing my symptoms to those of zinc def., but I have also learned by examining the side effects of my medication, cortisol, which is notorious for causing osteoporosis. Cortisol can waste zinc as part of the natural stress response.

With zinc deficiency, there can be a deficiency of sex hormones that among many things, help with bone density.

So along with daily zinc supps., I've added strontium citrate ( Doctor's Best brand). It's been found to improve BMD. I don't know if this is necessary for you at this time, but it's a possibility. We only need a trace amount of it in our diets, so I'm using it in a pharmalogical way.
 

jeffrez

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I've had osteoporosis, with supplementation reverting now mostly to osteopenia, and like you share the same concerns about not being able to engage in appropriate weight-bearing exercise. I've managed it so far with zinc, calcium and vitamin D supplementation. All the research says that HGH (human growth hormone) would help tremendously, but of course the mainstream doctors aren't really interested in helping anyone with something like HGH. They have no problem handing out all manner of poisons the pharmaceutical corporations tell them are "safe," but they're mortally afraid of HGH. :rolleyes:

This is the first I've heard about strontium citrate, but will check that out, sounds promising.
 

Enid

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Yes I also have Osteoporosis (that and Osteoarthritis were called reactive). Wish I could point you in a good direction. I'm on a medicine called Didronal (consisting of Etidronate and Calcit tabs). Not too sure if it is aiding though. Your own Doc and others members may have good advice.
 

November Girl

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Thanks everyone. I hadn't heard of the zinc or MK-4. I was part of a study on HGH for awhile, and remember that I felt better on it, but don't remember much of the details. It was 15 or 20 years ago. I'm also dealing with Medicare, and can't imagine my insurance covering the HGH.
 
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Hello November Girl. I too have osteoporosis (since the age of 42). I initially thought I'd try fosamax, and used it daily (at the time it was administered in a daily pill, as they hadn't yet come up with the weekly dose). After 6 months on the fosamax, my bone density did not change, and I then developed CFS/ME. Coincidence or was it a contributing factor? I'll never know, but I feel it may have contributed to weakening of my immune system and may have opened the door to CFS/ME.
Although I still have osteoporosis in my lumbar spine (osteopenia in my hips), in 15 years my numbers have not changed, and I feel that is a very good sign. I had read somewhere (sorry no link) that many with CFS/ME do have osteoporosis. This is felt to be due to poor absorption of vitamins/minerals (may be an intestinal issue). I supplement with lots of vitamins (including the methylation protocol) and minerals, but think it's especially important to take K2 (MK4 is one type of K2) as it transports the calcium to the bones. I take only a moderate dose of calcium, and after low vitamin d blood labs, lots of vitamin d (felt to be important in bone formation). I do walk daily, and am able to do a bit of exercise. Good luck!
 

November Girl

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Thanks Blue. I need to really look at my supplements. All I've done so far is shift my magnesium to go with the calcium. I don't remember if I mentioned this, but many years ago I showed osteopenia, which went away when I started taking betaine HCL with meals. It has since come back, and is worsening. Awhile back I decided to start taking the betaine again anyway.

I appreciate the fosamax story as well. I won't be starting them this year at least - unless my doc is VERY convincing when I see her next month.
 

sianrecovery

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I also have osteoporosis, but have decided not to take the biphos meds, or calcium. I have a genetic abnormality in terms of my body's ability to process calcium (kidneys calcifying, high blood and urine levels of calcium, kidney stones, demineralising bones) but even if I didnt I would be cautious about taking something that seems to worsen health statistics long term for women in terms of heart disease. sorry, cant remember paper, will try and find. I really think there is a powerful connection between metabolic downregulation/immune upregulation, endocrine disfunction, inc sex hormones, ME and osteoporosis. I hope diet and gentle exercise make a difference. I alo heard strontium helped, and magnesium, but I dont know the evidence. Its hard with very long term conditions to establish an evidence base that is truly looking at the condition over a lifetime, and research into a condition that primarily affects women in later life is not high on most peoples agendas. The pharma's are making a fortune from it, thats for sure.
 

xrunner

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Thanks everyone. I hadn't heard of the zinc or MK-4. I was part of a study on HGH for awhile, and remember that I felt better on it, but don't remember much of the details. It was 15 or 20 years ago. I'm also dealing with Medicare, and can't imagine my insurance covering the HGH.
If you google Glakay (trade name for MK4) you'll find studies on its effect on osteoporosis. Also you can pull up lot of studies on Vitamin k2 and its effects on health from pubmed.org. It works synergistically with vitamin D.
There's a thread on the subject http://forums.phoenixrising.me/index.php?threads/has-vitamin-k-2-mk-4-or-mk7-helped-you.15605/
Asklipia is the expert. I have experienced exactly all the things she mentioned there. This little known vitamin is remineralising the enamel of my teeth (I don't have osteoporosis).
 

xrunner

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My osteopenia has worsened since my bone scan 2 years ago. I'd love to hear from others who are dealing with this. I do plan to start walking more, and will adjust my supplements, but there's no way I can do the suggested amount of exercise! I'm not at all anxious to take any of the meds, but I may have to. I just got the results today, will discuss with doc next month.
Only exercise with weights seems to help. The heavier the weights the more beneficial it seems to be for bone health.
I think I saw a study where walking, running, cycling and other aerobic stuff didn't seem to have the same impact.
In ME/CFS weight training in very short bursts is possibly more tolerable than walks or aerobic exercise
 

November Girl

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This little known vitamin is remineralising the enamel of my teeth (I don't have osteoporosis).
(Glakey, MK4)

Interesting - the appearance of my teeth looks like the enamel may be weak - they just seem the tiniest bit transparent.

One thing that really helped in the past was to take betaine HCL with my meals. A nutritionist told me that I was not absorbing protein from my food, and that the betaine would help with all digestion. At the time I was having yearly bone scans as part of a study. My mild osteopenia reversed itself.

Our hot, acidic stomach is a major component in our ability to digest food. We tend to dilute the acid with cold drinks at mealtime, and often take Pepcid, Prevacid for heartburn, making the digestive issues worse!
 

November Girl

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Interestingly, I regrow broken bones at about twice the rate of most people. I've no idea if this is a good or bad influence on osteoporosis.

I still need to look into the MK4, though have upped my calcium intake (already had plenty of D3 & magnesium)

xrunner - thanks for the point about weight-bearing exercise. At least I've started walking up the stairs, instead of using the chairlift. I can always feel that my muscles aren't used to this yet, but it's amazing how the difficulty level varies from one day to the next.
 

sparklehoof

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My osteopenia has worsened since my bone scan 2 years ago. I'd love to hear from others who are dealing with this. I do plan to start walking more, and will adjust my supplements, but there's no way I can do the suggested amount of exercise! I'm not at all anxious to take any of the meds, but I may have to. I just got the results today, will discuss with doc next month.
Hi November girl- I know this post is older, but I was just diagnosed with osteopenia as well. I wondered if for me it may be a result of over treating my Hashimotos with Armour Thyroid. I had a rheumatologist run a bone scan and he found this, but never told me- I found out after I requested my medical files and saw the results of the scan and that he noted it in my file. I'm a little unsure if there's a reason for concern. Perhaps it is related to ME?
 

Little Bluestem

All Good Things Must Come to an End
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I was diagnosed with osteopenia/osteoporosis a couple of years ago. My doctor recommended OsteoPrev by Orthomolecular Products. It has 11 components beyond calcium and vitamin D.

She didn't mention exercise, probably because of the ME. I think weight bearing exercise is what helps osteoporosis. Some people with ME can do non-aerobic exercise such as weight training. Perhaps that would help osteoporosis.
 

Kyla

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I have osteopenia as well. (and I am in my thirties)
I assumed mine was due to Celiac disease which I also have. But it is a bit of a mystery as it was only checked well after my Celiac was treated. So should theoretically have been returned to normal / improved. I have no idea if mine is from ME or Celiac or just the fact that I can't exercise.

seems like there are a lot of people on here with bone loss. I wonder if that is routine in ME? seems like it would go with vit-d deficiency etc. I doubt it is often checked in patients who are young.
 

sparklehoof

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I have osteopenia as well. (and I am in my thirties)
I assumed mine was due to Celiac disease which I also have. But it is a bit of a mystery as it was only checked well after my Celiac was treated. So should theoretically have been returned to normal / improved. I have no idea if mine is from ME or Celiac or just the fact that I can't exercise.

seems like there are a lot of people on here with bone loss. I wonder if that is routine in ME? seems like it would go with vit-d deficiency etc. I doubt it is often checked in patients who are young.
Hi Kyla,
I appreciate your post:
"I wonder if that is routine in ME? seems like it would go with vit-d deficiency etc. I doubt it is often checked in patients who are young." I'm interested in collecting/graphing data from other patients so that we can use it to see possible trends and look at questions like these in using graphs and spreadsheets which are easier to analyze than sorting through forums. I've found other patients and a few healthy people who are interested. Any chance you would be up for joining in? My thought is that many efforts to collect data or take on big projects end because we're too sick and crash, but if there are enough of us, it could work. I'd love to hear your thoughts.
 

sparklehoof

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I was diagnosed with osteopenia/osteoporosis a couple of years ago. My doctor recommended OsteoPrev by Orthomolecular Products. It has 11 components beyond calcium and vitamin D.

She didn't mention exercise, probably because of the ME. I think weight bearing exercise is what helps osteoporosis. Some people with ME can do non-aerobic exercise such as weight training. Perhaps that would help osteoporosis.
Thanks for chiming in-- I'll take a look. I've tried unsuccessfully to maintain light weight bearing exercise since before my dx. With my symptoms of ME, and probably others have this too, it's difficult to maintain routines and its nearly impossible to build up/progress.
 

Kyla

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Hi Kyla,
I appreciate your post:
"I wonder if that is routine in ME? seems like it would go with vit-d deficiency etc. I doubt it is often checked in patients who are young." I'm interested in collecting/graphing data from other patients so that we can use it to see possible trends and look at questions like these in using graphs and spreadsheets which are easier to analyze than sorting through forums. I've found other patients and a few healthy people who are interested. Any chance you would be up for joining in? My thought is that many efforts to collect data or take on big projects end because we're too sick and crash, but if there are enough of us, it could work. I'd love to hear your thoughts.
hi @sparklehoof
sure. I would be interested in helping.
You can PM me to discuss if you want