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Old 08-26-2004, 08:00 AM   #1
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tarais HB User
Question Newly Diagnosed and Terrified


Hello, I'm 22 years old and have recently been diagnosed with osteoperosis in my spine ( -2.7) and osteopenia in my hips. I am absolutely terrified of how this is going to impact me in later life as if my bones are so bad now when they are supposed to be at their peak, what will they be like later in life?

I know it is mostly my fault because I have had anorexia for the last six years and haven't had my periods for over two years. I think it is probably the loss of my periods which is the main cause as even when I was at my sickest with anorexia, I still kept on drinking a litre of skimmed milk every day.

I am now in recovery from anorexia; I have been in hospital for four months and have nearly reached my target discharge weight. I get loads of calcium throught my diet in the form of milk, yoghurt and cheese and I also take a pescribed calcium supplement (calcichew D3forte). But I have been taking calcichew since last january and as my recent bone scan was bad It doesn't seem to be working, unless my bones were even worse before.

My doctor isn't pescribing any treatment as he says that the best treatment will be to continue gaining weight after I have left hospital and to get my periods back... I know now that I WILL continue to gain weight and hope my periods do come back and I KNOW I will never relapse into anorexia again as it has already wasted so much of my life...

but I am just so worried that I'm not doing as much as possible to try and restore some of my bone density or at least prevent it form getting worse. I'm doing everything I can with regards to diet and exercise and gaining weight but I am so scared this isn't enough. I am so scared that my bones will deteriorate to life threateing osteopersosis before I am really old.

Is there anyone out there who is in a similar position to me, or could anyone give me some advice or reassurance?

thank you...

tara

 
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Old 08-26-2004, 10:42 AM   #2
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Re: Newly Diagnosed and Terrified

I have a similar story. I was diagnosed with osteoporosis last year (I'm in my twenties also) after having anorexia for a long time and losing my periods. I am taking Fosamax to try to improve my bones. Maybe you will consider taking that, or another medication, if your bones don't improve on their own. I hope you'll get your period back soon - I think it makes a big difference. I never got mine back, so I feel like I'll only get worse if I don't take some kind of medication for it.

 
Old 08-29-2004, 10:37 PM   #3
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Re: Newly Diagnosed and Terrified

I had a -2.9 and after taking Actonel for one year my spine has shown improvement.
Ask your doctor about Fosamax or Actonel. Good luck to you.
HKCK

 
Old 09-01-2004, 07:54 AM   #4
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Unhappy Re: Newly Diagnosed and Terrified

Hi Kaitrin and HKCK,

thank you both for replying to my message. I did ask the Doctors in my ward round this morning about taking Fosomax or Actonel and they basically said that they won't use/pescribe them to younger people as they aren't sure about the long term effects and that they might cause cancer in the bone or something?

They said that the only thing they would consider is giving me a contraceptive pill but that they wanted to wait first as it would be better if I got my periods back naturally.

I feel at a bit of a loss... nobody on the ward has spoken to me about what it actually means to have osteoperosis and osteopenia or how seriously it could affect my life. I worry about it every day and think about it almost continuously at times... i'm conscious all the time of how I'm walking/sitting/standing/lying and every time I feel pain in my back (it's been sore for about two months now) I wonder if it is because of the osteoperosis. I'm scared to do things like lifting heavy objects and even worry when I am bending over doing something like reading a book.

Coming here and reading the boards has made me feel even more anxious about it, especially as there is a post that says drinking milk actually makes it worse!

Do other people here with osteoperosis find that their back is continually sore - is this a part of it? I keep on hoping that maybe my back is just sore because of something else and that it will get better soon!

My mum said that I should look on the bright side and be glad it's not worse and I am doing as much as possible, but I regret so much that I let this happen to myself.

tara

 
Old 09-03-2004, 06:18 PM   #5
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Re: Newly Diagnosed and Terrified

i just got diagnost with osteoporosis as well, im 28 and im a male. Im still waiting to see the specilist to find out why and whats next, real scared. I found out by having X rays due to back pain, so your back pain may have soemthing to do with it. I do masonary work and it is very physical and im worried i wont be able to provide for my family and how it will effect me at old age if i make it thier. i have low body wieght but i never considered myself anorexit, i also have had kidney stones , witch is from calcium deposits i guess, and oste is lack of calcium? cant wait to see the specialist to find out what is going on. my scores ranged from -1.7 in good spots to -3.0 in some,.

paper say osteoporosis is present inlumbar spine, osteopinia is present in femoral neck, osteoporosis is present in trochanter. What is Trochanter?? this was my lowest score.

At first i though oo osteoporosis what is that, i may take a pill for est of life o well, i didnt know anyhtign about it, ive been reading site and realized the saveraty of it now and am scared.

If my bones are weak at 28 and they get weaker after 30s i wont have any left by when?

me and wife recently got our first house and finnnaly starting to get out of poverty and now this. i dont want to lose our home from lack of work as it is effecting my duties and i strugy to get through the day, taking any pain pills i can get my hands on just to put bread on table. I havent told my wife my back pain has returned, she is already stressing enough over this and our bills . selling my generator i got tomarow to my dad for money to get my daugter school cloths.

I hope this diesie is fixable i still know little about it.

 
Old 09-04-2004, 03:24 AM   #6
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peregrine HB User
Re: Newly Diagnosed and Terrified

Quote:
Originally Posted by Thedogg

paper say osteoporosis is present inlumbar spine, osteopinia is present in femoral neck, osteoporosis is present in trochanter. What is Trochanter?? this was my lowest score. .
The trochanter is the upper part of the femur. The femur is the longest bone in the body - the bone in the thigh. The Trochanter is the place where the hip and thigh muscles attach.

 
Old 09-17-2004, 03:46 PM   #7
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lostgrrl HB User
Re: Newly Diagnosed and Terrified

Hi...I'm 32 - have been diagnosed with osteoporosis as I too have been anorexic and have had only a few periods a year since 17 - often going years without....they put me on fosomax - but I started losing my hair - as did a number of women I know - I'm off of that - my hair is still thinning now...I hope it stops - they said theirs eventually did...

I don't know what to say - I try to take calcium supplements...there's hope that they'll some up with some drug in the future that will really cure this - forteo is supposed to be amazing - but they really don't have enough research on it to merit my taking it yet....

I wish us both luck

 
Old 09-24-2004, 02:02 PM   #8
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Jan W HB User
Re: Newly Diagnosed and Terrified

Tarais,
You can do lots of things for your bones. Do more research in the "alternative medicine" world. Here's what I found for myself (I'm 54 and post-menopausal, with osteoporosis but no symptoms yet). Strength training makes a big improvement, and has other good benefits. Take vitamins/minerals that have Vitamin K, boron and about 10 other things that are "co-factors" for calcium (calcium alone just isn't going to to do it). Get some sunshine every day (5-20 minutes) before you put on sunscreen. Deal with depression (I recommend "Mood Cure" out of all the books I've read), other emotional issues, and adrenal exhaustion (linked to osteoporosis). Avoid milk (my mother was raised on a dairy farm and drank milk all her life and still got osteoporosis)(and there is tons of evidence against milk). Learn about other calcium sources, like salmon, sardines, sea vegetables and greens. Learn about a long-term health diet that you can live with. Research more about helping your body recover from anorexia.

I don't know why the doctor recommended against Fosamax at your age. I don't want to take any drugs, but I am investigating Fosamax, forteo and Miacalcin (calcitonin). One Web site said calcitonin seems to have the fewest side effects and has been around for years, but it only helps the spine. I took fluoride (imported from Germany by my naturapath) and my bone density improved in one year. But I quit because I got nervous about it, because there are so few studies.

 
Old 09-27-2004, 07:39 PM   #9
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Re: Newly Diagnosed and Terrified

In all the websites that I read about osteoporosis they said there was little pain involved until small fractures started to happen. I am wondering about the fact that you are all having back pain and that seems contrary to what I have read. I was diagnosed with severe osteoporosis -4.5 and have had no pain and so far no fractures for which I am grateful but I just wonder if something else is going on to cause all this pain you are all commenting on. Could it be combined with osteoarthritis which is very painful? As the osteoporosis gets worse small fractures occur and decrease the spine causing stooping and loss of height. I am confused now after reading about all your pain with oesteoporosis.

 
Old 10-14-2004, 08:21 PM   #10
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dee54 HB User
Re: Newly Diagnosed and Terrified

Canyondweller, I have daily, almost constant, back pain. I was diagnosed with degenerative disc disease in 1997 and it has gradually gotten worse over the years. My neurologist said there wasn't much more he could do for me except keep me on pain medication. He sent me to an orthopedic specialist because I was having pain in my right shoulder. This orthopedist said "my bones felt weak" just by pressing up and down my arms and squeezing my hands. He said I didn't have much strength, and he sent me for a bone density test, which came back that I have severe osteoporosis. My
T-score was -3.1 and I don't know how severe that is. I have never had a fracture, but had a hysterectomy in 1986, so since I am postmenopausal, he wanted to put me on Forteo.

I am scheduled to attend a class next week to learn how to give myself these daily injections, but after reading all the warnings re. Forteo and not enough clinical data to satisfy me, I have decided not to take Forteo for the time being.

Could someone tell me how much Calcium you are taking and Vitamin D? My doctor has not even mentioned this to me. He did start me on Fosamax while we were dealing with my ins. co. to get them to approve Forteo. I do feel bad that since they have approved it, I now don't want to take it because of the safety concerns I have

 
Old 10-14-2004, 10:18 PM   #11
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Re: Newly Diagnosed and Terrified

You T score is better than mine. The more minus the number the worse it is. Yours and mine are both terrible. I have friends that have degenerative disc disease so I know how painful it can be from listening to them and seeing how hard it is for them to get around. some have had surgery but still have pain. One is scheduled to have some sort of bridge from one disc to another. I do not know if they have ostoporosis, also. I was told to take 1500 mg of calcium a day in 3 seperate doses. I think the the Vit D is 300 aday and is included with the calcium in most tablets. Also, lately they are including Vit K for absorption. My Dr. told me that walking and weight bearing exercise is the best but when someone like yourself is in pain that becomes a problem. The Forteo is really expensive and I do not have prescription coverage as I am over 65 on Medicare. I cannot take Fosomax because of esophageal problems and I am afraid of the one that causes blood clots. It is a catch 22. Good luck.

 
Old 10-15-2004, 06:42 AM   #12
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dee54 HB User
Re: Newly Diagnosed and Terrified

My current t-score is -3.1, so if it goes to -4.0 that is worse?

Which drug is the one that causes blood clots? I am currently taking Fosamax and have been reading posts where it is causing hair loss for some people.

 
Old 10-25-2004, 10:05 PM   #13
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Re: Newly Diagnosed and Terrified

Quote:
Originally Posted by dee54
My current t-score is -3.1, so if it goes to -4.0 that is worse?

Which drug is the one that causes blood clots? I am currently taking Fosamax and have been reading posts where it is causing hair loss for some people.

Yes, -4.0 would be worse. I don't remember offhand what the name has but if you "google" osteoporosis medicine you will find it as there are not that many meds and it appears they all have some bad possible side effects.

 
Old 11-09-2004, 02:56 PM   #14
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Re: Newly Diagnosed and Terrified

I wish I had a smart doctor like yours! I was prescribed Fosamax, but stopped taking it because of the sideeffects....
Before you decide to take ANY medication, I suggest you go to your local library (or bookstore) and get a copy of Gillian Sanson's THE MYTH OF OSTEOPOROSIS (What Every Woman Should Know About Creating Bone Health - 2003 Edition). You will never touch FOSAMAX, or any other "medications" - in fact, you might do as I and stop looking for help and cure from doctors...
I eat healthy food, do plenty of exercise - yoga, running, walking, hiking, biking and weight lifting - and since I read Sanson's book I stopped worrying about osteoporosis...
Sanson's website is worth visiting: [url]http://www.gilliansanson.com/[/url]

Last edited by eve_hmmkr; 11-14-2004 at 08:15 AM.

 
Old 11-09-2004, 10:08 PM   #15
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Re: Newly Diagnosed and Terrified

thanks, I will try and pick that up. It is a worry. Unfortunately I can't do the running, hiking, etc. because I have emphysema. I do try and walk but have limitations. I need to do more weight lifting. I think I do eat pretty healthy.

 
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