I am living osteoporosis

By peggy pendlrton Tuesday, May 27, 2008

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I AM 34 years old i have it bad does it run in the family pleasce let me kow that you

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Maria Gifford, Editor

5/31/08 6:00pm

Peggy,

Osteoporosis runs in families, yes, and having a parent or sibling with osteoporosis puts you at greater risk, especially if you also have a family history of fractures. See:

Understanding Osteoporosis

http://www.healthcentral.com/osteoporosis/understanding-osteoporosis.html?ic=4025

I hope this information is helpful to you.

Best,

Maria

Linda

6/ 3/08 1:30pm

I too am living with Osteoporosis....my problem with it is that I have a ruptured disc in my neck C4-5 (which ruptered only 3 months after haveing a C6-7 disc repaired), 8 months ago I ruptured T8, (while doing Adopt-A-Road clean up) and I have ruptured discs at L4-5-6-7 & S1-2. I have been to 2 nerosurgerons and they will not repair them....not yet at any rate....I'm not completely bed ridden from the pain...only when I do become flat in bed..will they do the surgery...maybe 2-3 years....for now I'm riding my by around a Lake near our home at 5 AM, between 7-9 I'm at the YMCA doing warm water arobics, and walking 1/2 mile on a track....I hurt so badly, from head to toe....by 2 pm everyday, I am read for bed and the pain pills and muscle relaxors that put me in a coma sleep for hours...usually until the next morning...I HATE LIVING LIKE THIS....but I must becaue the good Lord says I must for now...can't argue with him you know....

havfn2

6/ 5/08 11:00pm

I have a different twist to the osteoporosis dilema.......I was diagnosed in December 2007 with hyperparathyroidism which my surgeon says contributed to my having an extremely severe case of osteoporosis, 4.5,,,,,,extremely bad for someone my age, 60 at the time. They found that 2 of my parathyroid glands had large tumors and were removed in January. I was taken off my Actonel and only have to take 1500 mg of calcium plus vitamin d daily for the rest of my life. Because the parathyroid was not working properly (it's only function is to regulate calcium levels in the body), the calcium was being leached out of my bones causing the osteoporosis. Also, I had brain fog and was extremely tired all the time. I couldn't make it through the day at all. Went to sleep exhausted and woke up feeling the same way. Life stunk in general. Gave up almost all of my dancing which I loved. So, now, I'm waiting to see improvements in my next DEXA scan and calcium and vitamin D levels. Theresa

Heidi

8/12/08 12:56pm

Hi, Peggy. I can only share my family's experience in answer to your question.

Both my maternal grandmother and my mother died of the effects of the disease. My grandmother, through a broken hip that deteriorated into gangrene and my mother, whose broken vertebrae allowed an infection into her spinal column and took her.

Now, I have full blown osteoporosis in, of all things, my forearms. The rest of me has osteopenia.

Now, did I get it from genetic traits or because I am very, very fair, have a delicate bone structure and live in the northern part of the USA? Perhaps, from both?

My grandmother and mother did not get any medication or supplements, although they were available for my mother. I tried a calcitonin formula called Fortical. It made me bilious and constantly nauseous, caused an odd weight gain, and eventually caused my muscles to seize. The muscle seizure made me fall and I called my doctor to see if the medication was doing more harm than good. After testing my urine, it was decided that the medication was not doing any good and I discontinued it.

Presently, I am working with a complementary MD as well as my regular MD. My regimine includes exercise at the gym every day where I do cardio, pilates and yoga. I love it!

My bone health 'cocktail' is a mix of liquid calcium, vitamin D, magnesium, boron (a small miracle!), vitamin C and strontium. I also take other supplements not necessarily related to bones. I worked the regimine out with my complementary doctor and I am being monitored by both MD's.

If I could take a mainstream medication, I would. Given my GI history, I have opted not to try any bisphosphonates although I have friends who have done excellently well on it. If a nasal spray made me vomit and live with constant, nagging nausea can you imagine what a pill that you take orally would do to me?

As I remember my mother, who in her younger days was a Pro- Am athlete, started to 'melt' away when she turned 70 and decided that she was tired of physical training and just sat down. In about five years she was unable to exercise because her bones and muscles were too weak. It was downhill from then on.

I have just turned 70. I am doing every 'natural' thing I can to keep what muscle power and bone density that I presently have. Read this site, work with your doctor. Let us know how you are doing.

Anonymous

9/13/08 9:06pm

Hi Heidi: Have you had a bone scan since taking your "cocktail mix?" Is it working? I have osteoporosis and started on Boniva. I am unhappy taking Boniva, especially when I read blogs on the terrible side affects people are getting from it... with jaw bone destruction being one of the worst. When I investigate all natural and supplemental ways of treating the disease, the authors completely disagree with the recommendations and guidelines given by regular MDs. It's very confusing. It would be great news to know your "cocktail mix" is working. Thanks.

Julia

9/13/08 11:51pm

The natural 'Cocktail' that I am taking was formulated by an MD who is also a Complimentary/Alternative physician. No, I have not had a bond scan this year yet but I will schedule one in October/November to see if there has been any improvement. I have been taking intensive yoga strength training, cardio training, free weights, heavy yard work and active ballroom dancing.

Since I have been working with this doctor (plus my regular MD) I have changed my diet to all organic foods. I concentrate on vegetables and animal protein that is good for me since I have hypoglycemia and react badly to sugars, even the sugars in fruit.

I am trying to make my constitution more alkaline. My doctor tells me that a too acidic body chemistry will not let my bones absorb the good supplements I take.

I feel terrific!

The disease is in my forearms. My spine, femurs and hip bones are osteopenia but have not gotten any worse in six years. I believe that is because I work so hard and refuse to just sit down and let my bones dissolve. My special savior has been Boron, a tiny pill that strengthened my teeth and allowed me to keep them rather than having them removed and replaced by plates.

I would probably take Boniva, Fosamax or Actonel if I could. However, my Complimentary physician is against these drugs because of the side affects. And, the news is getting worse as time goes on as regards to the bisphosphonates.

Let us know how the Boniva is working for you. Are you ever sick or nauseous? Do you ever have muscle weakness? I had all of those things on the calcitonin, unfortunately.

Best to us all.........Heidi

Julia

9/13/08 11:53pm

I am trying to make my constitution more alkaline. My doctor tells me that a too acidic body chemistry will not let my bones absorb the good supplements I take.

I feel terrific!

Let us know how the Boniva is working for you. Are you ever sick or nauseous? Do you ever have muscle weakness? I had all of those things on the calcitonin, unfortunately.

Best to us all.........Heidi

orpheus

9/14/08 12:45am

Hi Heidi: Thank you for your quick response. I have had a lot of side affects from the Boniva. I heard you can get flu like symptoms. It could be a coincidence, but I got a full-blown case of the flu the first month I took it, and I have had flu-like symptoms ever since. My bones are aching and I have absolutely no energy. Acid reflux also appeared. I know it's from the Boniva. I used to take Actonel a few years back and had terrible acid reflux. When I stopped taking the actonel, the acid reflux went away. I've talked to my doctor about alternatives to Boniva type meds, but he just isn't interested in it. It's difficult finding a doctor who will try the alternative way. I'd like to keep in touch to see how you are doing when you get your bone scan. In the meantime, I'll try and seek out a Complimentary/Alternative physician.

Julia

9/14/08 10:25pm

Hey,Orpheus. Remember that there are very few doctors who specialize in osteoporosis. And, most of those who do, are very committed to the prescriptions drugs, especially the bisphosphonates. I was turned down by one osteo doctor at New York Presbyterian because he doesn't accept insurance. (Never mind that I was willling to write him a check) and another who, after reviewing my file decided that he could not help if I could not tolerate the mainstream drugs. I wish I could.

I have had excellent results with Complimentary/Alternative medicine in balancing my hormones, treating my hypothyroidism (I take Synthroid, a mainstream medication) and my hypoglycemia. My alternative osteoporosis treatment is very personalized and complex. It is not just popping a few calcium pills each day and hoping for the best.

One of my best friends has already experienced the silent fracture of two vertebrae and her doctor told her to take two Oscal pills each day and let it go at that. Doesn/t sound like a serious treatment, does it?

There are other treatments coming down the pipline--British drug companies are looking into a Strontium formulation. Other treatments are also on the horizon. In the meantime we can all follow the best health practices we can, eat well, and exercise every day.

Best...........Heidi

orpheus

9/23/08 6:25pm

Hi Heidi:

This is Cherie (aka orpheus). I found a Nutritionist in my area who is going to work with me on the osteoporosis issue. She is the only nutritionist I found that will also do bloodwork to find out what my body may need or is lacking. I will let you know how things go. Thank you for all the information you shared. I will be on the look out for the new strontium formulation that you mentioned. I am sorry your were turned down by the osteo doctor because you cannot tolerate the bisphosphonates, but I think you are on the right path and found someone good to work with you. You may just be better off! Take care.

Cherie

Julia

9/24/08 12:28pm

Cheri (orpheus)--you go! I do believe that natural supplements do help--but do they 'cure' the problem? Something that will have to be studied as time goes by. I do know that I feel well, have not had a silent fracture and am gaining strength each day with my yoga/cardio/free weight program.

Do post from time to time, as I hope everyone on a natural program would, as to your progress.

I now take strontium supplements. You can buy them in a well stocked health store or on line. I take, under doctor's direction, 500 Mg per day. I have absolutely no adverse or uncomfortable side effects. My pills are marketed by 'pure encapsulations, inc.' They don't capitalize their name.

Congratulations to us all for Doing All Possible, whether via pharmaceutical drugs or natural supplement, for fighting this disease.

Heidi

Julia

9/24/08 12:40pm

Dear Anon-- I am getting ready for my annual bone density test. Frankly, I don't think there will be any improvement at this point because it has only been 12 months since I started the Fortical, a medicine that did more harm than good (I am still recovering from its side effects) and then went to the complementary doctor who readjusted my supplement program. It takes more time. I will definitely post when I learn the results.

I want a full-body scan but my regular doctor says that is not necessary. However, after begging for three years to have my forearms scanned because I just felt that something was amiss, they discovered advanced osteoporosis! My spinal/hip/femur scan only indicated osteopenia for six years prior to that. So, I wonder if it is somewhere else on my skeleton, too.

Remember, there are few doctors who specialize in osteoporosis. I'm sure there will be more as time goes on. I have heard of family doctors who, after diagnosing osteoporosis in a patient, advises them to suck on a few Tums a day. Hardly a treatment program.

Best........Heidi

I am living osteoporosis

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