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Old 01-26-2007, 07:00 PM   #1
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Question did everything right, why did everything go so wrong

I recently had my 2 year bone density test, I had been diagnosed with osteopenia prior. I was so excited after the test thinking I was going to hear good news that I had improved or at the very least maintained. I was in disbelief when they told me I had osteoporosis, especially when for two years I had done everything I was told to help keep my bones strong. Right now I must apologize, I am having a pity party and I am the only one invited. There was a significant change, my mind was in a tizy. Was it the premarin I stopped? I had a total hysterectomy years back. I have to make a decision about what road to take and I am having trouble driving the car. Medications galore! Evista? Forteo? etc. etc. etc. I have GERD and alot of the meds would make that unbearable. I was 5'10 1/2 inches and now I am 5'9" when did that happen? I thought they were kidding when they measured me before the test. If this sounds familiar to anyone please let me know, I would love to hear from you, the words of encouragement would give me hope right now. blessings!

 
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Old 01-27-2007, 05:20 AM   #2
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Re: did everything right, why did everything go so wrong

I know how you feel. My test showed same results. I also change diet,exercise and I feel great, but the bones showed a different results. I just can not believe it, I will join your pity party. I am having blood test done, did you have any??

 
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Old 01-27-2007, 05:54 AM   #3
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Re: did everything right, why did everything go so wrong

Wildflower:
I so sorry you are experiencing this angst. I went thru quite the same thing. I was dx'd osteoporosis (T scores around -3.5) so I researched and did everything I was supposed to do, walked every day, took calcium citrate plus Fosamax religiously. Had a dexa after 18 mos and it was worse. Hmmm. On top of this I developed a kidney stone from the calcium. Now mind you, the dr.'s would not say it was from the calcium but I never had this problem before. Sooooooooo...Previous to this diagosis I had NEVER broken a bone even though I had my share of falls and hard bumps, etc. I was always very active with aerobics and exercise. But now my endo wanted to put me on Forteo.

I went back to researching and found the book The Myth of Osteoporosis, a very eye opening book. Then I found a couple of fx risk tests on the web and discovered I am at low risk for fx. My mother broke her hip at 85 while running in high heels. She has osteoporosis. This, actually, was the only risk factor I have.

After this, I decided Forteo wasn't for me, took myself off the Fosamax and discovered the terrible neck and shoulder pain I had for months went away after 6-8 weeks. Now I work out with weight bearing and resistance exercises, take less calcium by pill and more by diet and just not worry about it anymore. I truly believe there are other factors in bone strength besides Bone mineral density that is measured by a dexascan. I also believe the drug companies are scaring the heck out of us to sell more product. I decided that taking all these drugs just so I wouldn't break my hip at 85 wasn't worth it for me. This was a strictly personal decision.In my case the Fosamax wasn't doing anything. If I had gone on the Forteo, I believe whatever benefit it gave me would have been gone in no time because she was going to put me on the Fosamax again after the 2 years.

Ok, with this said there are people that have medical conditions that have made their bones brittle and have low impact or no impact fx's. You have to access your own risk. If it is high or you've had a fx then take measures to help it.

Let go of the fear and look at your medical condition rationally. Get as much information as you can. Take your time. A month one way or another will not make a difference. Make the best decisions you can for yourself. Good Luck!

 
Old 01-27-2007, 05:59 AM   #4
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Re: did everything right, why did everything go so wrong

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Originally Posted by Turquoise View Post
Wildflower:
I so sorry you are experiencing this angst. I went thru quite the same thing. I was dx'd osteoporosis (T scores around -3.5) so I researched and did everything I was supposed to do, walked every day, took calcium citrate plus Fosamax religiously. Had a dexa after 18 mos and it was worse. Hmmm. On top of this I developed a kidney stone from the calcium. Now mind you, the dr.'s would not say it was from the calcium but I never had this problem before. Sooooooooo...Previous to this diagosis I had NEVER broken a bone even though I had my share of falls and hard bumps, etc. I was always very active with aerobics and exercise. But now my endo wanted to put me on Forteo.

I went back to researching and found the book The Myth of Osteoporosis, a very eye opening book. Then I found a couple of fx risk tests on the web and discovered I am at low risk for fx. My mother broke her hip at 85 while running in high heels. She has osteoporosis. This, actually, was the only risk factor I have.

After this, I decided Forteo wasn't for me, took myself off the Fosamax and discovered the terrible neck and shoulder pain I had for months went away after 6-8 weeks. Now I work out with weight bearing and resistance exercises, take less calcium by pill and more by diet and just not worry about it anymore. I truly believe there are other factors in bone strength besides Bone mineral density that is measured by a dexascan. I also believe the drug companies are scaring the heck out of us to sell more product. I decided that taking all these drugs just so I wouldn't break my hip at 85 wasn't worth it for me. This was a strictly personal decision.In my case the Fosamax wasn't doing anything. If I had gone on the Forteo, I believe whatever benefit it gave me would have been gone in no time because she was going to put me on the Fosamax again after the 2 years.

Ok, with this said there are people that have medical conditions that have made their bones brittle and have low impact or no impact fx's. You have to access your own risk. If it is high or you've had a fx then take measures to help it.

Let go of the fear and look at your medical condition rationally. Get as much information as you can. Take your time. A month one way or another will not make a difference. Make the best decisions you can for yourself. Good Luck!

 
Old 01-27-2007, 06:00 AM   #5
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Re: did everything right, why did everything go so wrong

Wildflowers: Although some of the causes of osteoporosis are known, and more are being found all the time, many are not known and may not be found within our lifetime. It was recently found that many GERD medications contribute to osteoporosis; perhaps that is a contributing factor in your case. I too, after being diagnosed with osteopenia, "did everything right" for the next year, and still worsened to osteoporosis. Find an endocrinologist, choose a treatment path that seems the most promising and least damaging (I prefer Forteo), keep up with the news, and try some alternative therapies. Once your pity party is over, face it as a challenge, put a determined grin on your face, and go back in the fight!

 
Old 01-27-2007, 06:13 AM   #6
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Re: did everything right, why did everything go so wrong

Thank you pic and Turquoise, the blood tests that were ordered were Vitamin D 25 Hydroxy, checking for abnormal metabolism of calcium due to deficiency of excess of vit d. PTH - low or high calcium, where overproduction of pth by parathyroid gland. My tests came back normal. What is so doggone confusing (Turquoise I heard every word you said and I will listen to you because I hear a voice from experience) is we sometimes feel like warm bodies to the medical profession, I cannot tell you how many scripts I have thrown away over my lifetime, looking back they would have destroyed me, vioxx was one of them. So you are my friends, you are my buddies, I would take your advice and experience in a heartbeat, why? because you care, because you are going through the same process mentally to determine what is best for yourself, emotionally, physically, spiritually and financially. I will do the best I can with your help to make a decision, like my mom once said many years ago, there is no wrong or right decision because you will learn from any decision you make. God Bless you and these healthboards the lessons, decisions and experience can be posted and known. Blessings! Wildflowers

 
Old 01-27-2007, 06:33 AM   #7
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Re: did everything right, why did everything go so wrong

Thank you Pika B, I never would have thought that gerd meds would have contributed to bone loss. I hear from all of you that research is the "biggie" so I can make the best decision I can. To be honest with you I felt a urgency to make a decison, I felt I had only days, hours even minutes to come up with a answer for my poor bones. Now, thanks to you i will sit back, re-evaluate, and take all of this wonderful wonderful information to heart. I will sope all this infor up like biscuits and gravy, right now I am a sponge and I just have been blessed by all of you. Thank you for the gift of you, time is a most precious thing and you gave of your time to answer my post and I will be forever grateful. Blessisngs Wildflowers

 
Old 01-27-2007, 09:53 AM   #8
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Re: did everything right, why did everything go so wrong

Hi Wildflowers, I'd like to add myself to the rest of you who thought you were doing all the right things. When i was dx with osteo last may i went thru the same thing. I went on actenol at my dr.s advice and then decided after 2 months it wasn't for me. I felt the risk of taking it weren't worth the risk of what it could do me with all the possible side effects. the biophosphate drugs are realtiviley new and no ones really knows the long term effects of them. Being a guinea pig for the phamacuitical companies isn't something i want to be. I also didn't feel right taking a drug that may or may not help prevent something that may or may never happen. I've been a walker and exerciser all my life so i know in that area i was already doing the right things. Same with calcium supplement and a pretty good diet. I have never broken a bone nor has anyone in my family. As far as risk factors go, i don't have any. The one thing going against me is that i was hyperthryoid, Graves Disease, which lead me to having my thyroid albated. I am now on total thryorid hormone replacement. Have all of you had your thyroid checked? Both being hyper T or hypo T can be hard on the bones. I probably had osteo for several years before i was tested and dx. A heel test at a health fair lead me to have a DEXA.

I too read the book The Myth of Ostoeporosis and after reading it decided i was going to live my life and not let the dx rule me. You should read it if you haven't, it is eye opening like Turquoise said. Puts a different spin on what most books have to say.

I try to use good body mechanics and not to take unnecessary risk, but am not letting it stop me from doing what i want. There is a difference between bone density and bone strenght and like to think that even if my bones aren't as dense as they should be, they are still strong.

When i stopped the actenol i went decided to take strontium citrate to help my bones. It's a natural supplement that has been shown to have good results and vitually no side effects. It helps grow natural bone. It is the drug of choice for treating osteo in Europe (Proteos, strontium renalate) and in many other countries around the world. The FDA hasn't appoved it for use here.

I agree with Turquoise, give yourself time to adjust to the news and learn what you can so you can make the best decision for yourself. In the beginning we are all so shocked and overwhelmed by the dx that it's hard to think straight, much less make major decisons. You're doing the right things with diet, supplements and exercise, so don's don't beat yourself up wondering what you did to bring this on. You did nothing wrong. take care...phyllis

***I guess i should have written strontium renalate is "one of the drugs of choice in Europe", instead of the drug of choice. They probably use biophosphates as well. I'm sorry if i offened anyone.

Last edited by phylwill1152; 01-27-2007 at 06:19 PM. Reason: clarify statement...

 
Old 01-27-2007, 10:42 AM   #9
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Re: did everything right, why did everything go so wrong

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strontium...is the drug of choice for treating osteo in Europe (Proteos, strontium renalate) and in many other countries around the world....
I'm really skeptical that it is the drug of choice for any country yet, as much more research would need to be done. Bisphosphonates are still widely considered to be the drug of choice for osteoporosis, and the alternatives like strontium renalate are recommended when "bisphosphonates are contra-indicated or not tolerated."

We on this board sometimes like to think we are more wise than the world's mainstream medical establishment, but it's possible that we aren't.

Last edited by PikaB; 01-27-2007 at 11:26 AM.

 
Old 01-27-2007, 01:02 PM   #10
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Re: did everything right, why did everything go so wrong

Thank you Phyllis for sharing your experience and what is working for you. You better believe I am going out and buying the book, myth of osteoporosis - when all is said and done getting it right in my mind is paramount to a good outcome no matter if I break a bone today or 10 years from now. I do believe in the mind/body connection. If I think about fractures all day long, I'm sure somehow the mind will send a message to my body that will not be positive for my overall health. I have realized that this ole' body isn't a speed boat anymore , I am a ocean liner and it takes me longer to make the turns. I so appreciate all the comments, trust me, I value each and every word. I was shell-shocked from the diagnosis, I truly thought I was going to hear better news, then you all came along and I felt hope. care and concern, it really made all the difference in the world to me. I am sending you all a spiritual bouquet of flowers. Blessings! Betty Lou (wildflowers)

 
Old 01-27-2007, 02:26 PM   #11
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Re: did everything right, why did everything go so wrong

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Originally Posted by PikaB View Post
I'm really skeptical that it is the drug of choice for any country yet, as much more research would need to be done. Bisphosphonates are still widely considered to be the drug of choice for osteoporosis, and the alternatives like strontium renalate are recommended when "bisphosphonates are contra-indicated or not tolerated."

We on this board sometimes like to think we are more wise than the world's mainstream medical establishment, but it's possible that we aren't.
Unfortunately the mainstream medical establishment lumps everyone into one catagory. Have you ever heard of "standard of care"? When someone comes to the doctor with a particular problem there are specific things that are to be done and Rx'd. That's the starting point for trying to take care of an illness.

In working in the medical field for 15 years I've seen a lot of "miracle drugs" that did more harm than good. There is NOT a drug on the market today that doesn't have side effects. Ask yourself if the side effects are worse than the problem. In many cases they are.

Unfortunately, the drugs of choice for Osteoporosis have lots of side effects. We all start taking the meds with high expectations and then some of us get shot down at our next dexa. My doctor even said to me I was the first patient that didn't respond to Fosamax.

I had to find a plan for myself because everything she offered me was not helping. We are INDIVDUALS and react to everything differently. Bottom line is: If you put your entire faith in prescriptions and doctors there will be a point you will be dissapointed. If we educate ourselves and start a regime that is tailored to ourselves along with our doctors, we can fight the fear and scare tactics of big pharma.


When I go for my next dexa in May, it will probably be the last one. I've decided to live my life like I was before the DX. I will be doing my exercises, taking supplements, and watching for any other break throughs that might help me. Who knows, I might have had low bone density when I was younger. Maybe they should start doing a baseline density test on all at the age of 25 then following up at 10 year increments. This field is so new that they are finding out new things all the time. I'm hoping for the best while doing what will work for me.

 
Old 01-27-2007, 02:49 PM   #12
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Re: did everything right, why did everything go so wrong

Turquoise, you are absolutely right! I do believe side effects can be more dangerous than the illness it is trying to help to improve or fix. I will always take the holistic or natural way first. My brother had open heart surgery a year ago, ended up in a nursing home and just recently got back into his apartment. They gave him a medication that was so toxic and so strong that he was being poisoned and didn't even know it. I literally took him out of the nursing home and looked over every med he was prescribed and finally found the culprit. My brother didnd't deserve what happened. That is why I am am afraid to take any kind of meds whatsoever unless I know more about them, because a physician prescribed a medication does not make that medication side effect free. In fact no one knows our bodies better than we do, I will not go to a doctor that will not listen to "my story" We all have "our stories" we paid the price through alot of pain, experience, trials and errors and I will listen with great intent on anyone wishing to share their story with me. Thank you blessings!

 
Old 01-28-2007, 04:51 PM   #13
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Re: did everything right, why did everything go so wrong

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Originally Posted by wildflowers View Post
I recently had my 2 year bone density test, I had been diagnosed with osteopenia prior. I was so excited after the test thinking I was going to hear good news that I had improved or at the very least maintained. I was in disbelief when they told me I had osteoporosis, especially when for two years I had done everything I was told to help keep my bones strong. Right now I must apologize, I am having a pity party and I am the only one invited. There was a significant change, my mind was in a tizy. Was it the premarin I stopped? I had a total hysterectomy years back. I have to make a decision about what road to take and I am having trouble driving the car. Medications galore! Evista? Forteo? etc. etc. etc. I have GERD and alot of the meds would make that unbearable. I was 5'10 1/2 inches and now I am 5'9" when did that happen? I thought they were kidding when they measured me before the test. If this sounds familiar to anyone please let me know, I would love to hear from you, the words of encouragement would give me hope right now. blessings!
Hi: Don't feel alone with this type of response to your therapy, because unfortunately it is quite typical. Many people have to try more than one drug/therapy before they see positive results, and some see the increases on the first try, it just depends on your body.

Having a hysterectomy can certainly effect your bone architecture, since you are no longer producing the normal amount of hormones, which is a key to bone building mechanisms. It's true that there has been recent research blaming ppi's/ssri's effects on bone, and I would certainly hope by now, that WE all know there is no such thing as any drug, food, liquids, etc that *don't* have side effects. Way the pros and cons of everything, and then decide what you need to take to get you better, whatever that is.

You mentioned height loss, do you also have kyphosis (spinal curve)? You might want to check for compression fractures, since some of them have no symptoms.

Your story reminds me of *so* many here, but once you recover from the shock, just move forward with whatever you decide to do and don't waist any time on the how or why, it tends to be a waste of precious time and energy, plus it doesn't help the stress hormones either which are bad for the bones

If you haven't checked for secondary causes of osteo, then you might want to do that, which is the only time I allow myself to even think about the dreaded "how" question. A lot of us do all the correct things, sometimes our entire lives, and still bad things happen because that's life, so do what you can to move forward and think about today and tomorrow instead of yesterday.

I hope you have a good dr because we all know none of us are perfect. You need someone who will not only listen but will put your concerns and needs "into" action. I've never been one to think that just because you have an MD, or a PhD after your name it makes you or what you do infalable, we all make mistakes, so be proactive in your care, it doesn't come with *any* gaurantees. For me questioning everything I hear, in the way of treatment, is the only way I can breakdown and verify the advice I get, and believe me I don't take anything anyone says at face value, I need to comfirm it for myself.

Here's just a few *secondary* causes of osteo if you need to reference them: Thyroid, Parathyroid problems, Celiac, Bone disorders other than osteo, eating disorders, medications (cortisone, depro provera etc) calcium, mineral, vitamin malabsorption problems... I'm sure you know the primary causes already.

Good Luck, and I think your ready to move on now or real soon

Last edited by DesertBloom; 01-28-2007 at 05:20 PM.

 
Old 01-28-2007, 06:19 PM   #14
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Re: did everything right, why did everything go so wrong

Wildflowers- You are not alone! I too felt devastated after my diagnosis. As Desertbloom said, it is so important to find a doctor that will work with you and listen to your concerns. My primary care physician was horrible! With my very low t-scores he just wrote a prescription for fosomax and blew the whole thing off like I had been diagnosed with chronic dandruff. I set out to find a specialist-an endocrinologist who had a specialization in osteoporosis. On a technical level I feel that I could do no better than the endocrinologist that I have . But, her bedside manner leaves alot to be desired. It may take awhile to find the right doctor but with osteoporosis being a condition that we are going to have to deal with over the long term-it is critically important.

You said that you are so distraught that driving your car is difficult for you. If this is so, you probably should not drive until you regain your balance/composure. You don't want to put yourself and others at risk for an auto accident. I have read that at least half of the people diagnosed with osteoporosis develop depression. Of course,the phenomena of developing depression following the diagnosis of a serious disease is not limited to those with osteoporosis. We need to be aware of this. Again do not feel alone!
I too am coping with the shock of diagnosis and I do feel out of balance-
there is a new normal that sucks. But, I am trying to go forward -to learn
what I can about osteo and learn better ways of coping. I have been thinking
for sometime now that I wanted to start a thread dealing with the topic of coping . What people have found helpful in dealing with their fears-like
alternative therapies such as visualization, meditation, reiki etc. I don't even know what reiki is but have seen it listed as a mind -body type of therapy.

I am wishing the best for you, wildflowers! May I ask, are you a specific wildflower, or just wildflowers in general? I love wildflowers. Here in the Pacific Northwest the trillium is a beatiful spring wildflower. It's one of the very first to appear in the early spring, and there is something so hopeful about the flower.It has three leaves and three white petals. As the flower
matures it becomes streaked with pink that later deepens to a purple. The trillium can blanket the hillsides and fill the lowlands. There is still beauty out
there that I want to experience-I am sure that must be true for you as well.

 
Old 01-28-2007, 08:43 PM   #15
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Re: did everything right, why did everything go so wrong

Thank you, Thank you, desert bloom and osteoblast, I must being doing somethng right to be so fortunate to have found all of you. When the student is ready teachers will appear and I thank God for you. I have gotten so much from your posts, in fact I almost run to my computer to see if I got any new messages. When I see in my e-mail I have a message, I get so excited i can hardly wait to open it to read it, and there you are. It does mean everything to me to hear your stories, it just does, I felt at first guilty that I missed something that I had should have done, I was taking care of my brother who had open heart surgery and he was getting sicker and sicker, the year went by and I probably didn't take care of myself like I should have. The stress of watching my youngest brother die slowing from a mediication improperly ordered for him, and taking care of him, I am almost positive stress played a role in my health this past year. I suppose I didn't want any more negative news, I was waiting for some positive feedback somehow. I will continue to do all the research and I will pray for guidance and a open mind. I do love wildflowers, they grow beautifully along the landscape everywhere, they are planted in my garden and I had fresh wildflowers as my wedding bouquet many many years ago. I just want to add a story and I hope it's not to long for I don't want the message board to get mad at me. it's called TWO HORSES Just up the road from my home is a field with two horses in it. From a distance, each looks like every other horse. but if one stops the car, or is walkng by, one will notice something quite amazing. Looking into the eyes of one horse will disclose that he is blind. His owner has chosen not to have him put down. but has made a good home for him. This alone is amazing. Listening, one will hear the sound of a bell. Looking around for the source of the sound, one will see that it comes from the smaller horse in the field. Attached to her bridle is a small bell. It lets her blind friend know where she is, so he can follow her. As one stands and watches these two friends, one sees how she is always checking on him, and that he will listen for her bell and then slowly walk to where she is--trusting that she will not lead him astray. Like the owners of these two horses, God does not throw us away just because we are not perfect or because we have problems or challenges. He watches over us and even brings others into our lives to help us when we are in need.
Sometimes we are the blind horse being guided by the little ringing bell of those who God places in our lives. Other times we are the guide horse, helping others see. Good friends are like this. You don't always see them, but you know they are always there. Please listen for my bell and I'll listen for yours. Thank you my friends many blessings and good health to all of you Betty Lou(wildflowers)

 
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