Osteoporosis- anorexia and amenorrhea

Hi,
I am a 30-year old woman just diagnosed with severe osteoporosis (-3.2 in L1-L4 spine, femoral total -2.2). I also have just sustained a non-traumatic fracture in my fibula (a non-weight bearing bone) when running one day- the bone just literally cracked for no apparent reason and I was in extreme pain. I am in a walking cast for probably at least 2 months and finally got the okay to start swimming and the stationary bike (with the cast on).

Anyways, I am posting because I am very scared and don’t know where to turn. I know the cause of my osteoporosis- I was anorexic for most of my college years, lost a lot of weight and my period. Even before that, being a high-level gymnast in high school, I lost my period for a few years (despite maintaining adequate health and weight). After college, I was able to regain menses, but still be a bit underweight. Four years ago when I started graduate school, the pressures hit me again. Even though I know I am not again full blown anorexic, I have lost my period (haven’t had it since I started grad school), still have low body weight, and my eating habits are less than ideal. During this time I took up running as a means to counteract the stress, it seemed to help mentally, and I managed to complete a few marathons. I actually felt pretty good, so never in a million years did I think I would run into trouble. Until my fracture. When I got the x-ray done from the orthopedist, he said that something wasn’t right, my bones on the conventional x-ray actually looked very thin and weak, and this type of fracture is extremely rare in non-traumatic cases. He referred me to a family practitioner after my DEXA revealed osteoporosis.

The doctor took a brief history and came to the conclusion that nothing could really be done unless I take Fosamax since the osteoporosis was so severe. The emphasis was not placed on nutritional therapy, even though more than once she told me I am too thin and malnourished. The only thing she suggested was calcium + vitamin D supplements and to drink a can of Ensure daily. Knowing the side effects of Fosamax, I told her I have a history of a gastric ulcer and in general a sensitive stomach- to this she responded that I could take the IV form instead.

I am angry and worried. Angry because I know that my eating habits have been very poor for too long, and this was like a wake-up call to me- I feel at least I could try nutritional therapy first, and I don’t know why my doctor didn’t suggest this before the medication. I am worried because I don’t know if any of this can be reversed, I feel I have screwed up big time, and I still am in a bit of a shock. I have read conflicting studies on anorexia, amenorrhea, and osteoporosis- some say that bone mass can be recovered with maintenance of a healthy diet and weight and resumption of menses, others say it can’t. Despite the fact that I am a very small girl to begin with, my baseline bone mass is already lower than average.

I also know the side affects of the bisphosphonates, and that they are not approved for premenopausal women (unless one is suffering from medication-induced glutocorticoid excess). I don’t want to take this medication since the long-term affects are not elucidated, and if I ever decide to have children in the future, I don’t want to find out that this medication causes harm.

If anyone is in a similar situation and has some advice, please let me know. I am losing sleep over this, and I don’t feel as if I know what is the right approach to take. In any case, there is a nutritionist in the same building as my doctor, and I have scheduled an appointment with her. I see her in a few weeks and am keeping my fingers crossed.
Thank you for reading and good luck to all.

By Veronica1
Posted April 8, 2009 at 1:09 am
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Hello. I was very sad to read your story. I was diagnosed with anorexia at age 13 and had full blown, severe Osteoporosis at age 25. If you'd like to email me separate from the site, my email is harmonica1961@yahoo.com. If you don't want to, that is okay too but I think we have alot in common. I am on a Boniva infusion which is administered by IV every 3 months and my numbers on the dexa scan have improved over the years. Please don't hesitate to email me if you would like to talk further. Best of luck to you, Veronica

By debbie59
Posted April 5, 2009 at 6:11 pm
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To all an old lady hello,
Is this a relatively new phenomena with such young women with such severe osteoporosis? I have never heard of this before. Also where do you live that you all seem to have such horrid Dr.s? I have a very old degree in environmental science, so my science is not up to date, although I do google and research to ad nauseam. I believe that if you talked to a good Dr. (mine is a research Dr. at Ohio State University) that your extremely low BMI, even to the state of anorexia was the beginning of your problems. From what I understand, this is a psychological problem which needs to be addressed by a Mental professional. I am post menopausal and I have been taking Forteo for almost 2 years. Also calcium and mega doses of D (4000 iu of D). I also walk, NOT JOG, 30 minutes a day. You need weight bearing exercise, but it has to be low low impact. If you want to add weights, try the 1 to 2 LB. weights you can wrap around your ankles and wrists. Just more convenient, you can just carry on your daily routine with them on. Compression fractures in your spine are our biggest worry as the more we get the less amount of space in the thorax for your other organs causing breathing problems. I am on nightly oxygen because of this. I've read that if the fractures are found soon after they happen , there is a surgical procedure (kyhoplasty-probably not spelled right) that can build the spine back up. I'm going to ask my Dr. about it the next time I see him. You really need to find a good Dr., an endocrinologist or in my case a rheumatologist-autoimmune disease Dr. who is also a researcher with other bone diseases. If you are lucky enough to live close to major teaching hospital, usually affiliated with a university, that's a good place to look. Also it was my GYN that got me into see this Dr. Good Luck in your search.

By pgreene
Posted April 4, 2009 at 8:59 pm
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Prayer,
Do NOT feel like a failure! You had no way of knowing that your anorexia would contribute to having osteoporosis. And if you had known, would it have changed anything? I doubt it because when we are young we think we are invincible and can't see very far into the future. In my case they could not find a cause for my osteoporosis, and I was diagnosed at the age of 33. At least in your case you know a probable cause and may be able to use your knowledge to help many young people today if they will listen. I try to stress with my daughters the need for calcium and they really don't get it. Don't beat yourself up over it. Just move forward from here and do the best you can.

Peggy

By prayer
Posted April 3, 2009 at 10:50 am
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Hi, I read your statement and now I feel I am not alone.
I am a recovering anorexic. I am 56 years old and have the bones of an 80 year old. I saw my rheumatic disease doctor yesterday and I left there feeling like I wanted to end my life. My osteoporosis is very severe, high 3.7 t scores and have been doing my best to take the fosomax and supplements but because I havent done it correctly and I still smoke the doctor really gave me hell. I feel like a total failure and I started my journey with starvation at a young age because I was severely abused as a child and young adult. I never built bone mass. I am trying not to give up hope and could use a person to talk to. Do your best to stop the progression now if you can. I would take the supplement if your doctor tells you to. There are risks with all medicines. Please get back to me. Thank you so much

By Fitness_and_Function
Posted March 3, 2009 at 11:23 pm
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Hi sunrun, I can understand your worries, however do not despair, you do not have to lose sleep over this. Yes you have been breaking down your body for many years, now you are ready to rebuild your body. It is great that you are seeing a nutritionist, next to that you need to rebuild your muscles and bones by regular and consistent weight bearing physical activity and resistance training. Yes you need to start pumping iron, however you need to start slow and gradual and work with a health fitness professional. To keep up with your physical activity, exercise and nutrition you may need help from a wellness coach. Staying on track, being consistent and regular in the above activity will help you rebuild your body and become pain free again. You are still young and can thrive. believe in yourself , it may be difficult to step into these unknown areas, just know that you can come up on top. I wish you much determination and love for yourself, you will succeed!

By Gatekeeper
Posted February 28, 2009 at 3:03 pm
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Girls, you definitely can gain it back. Some good advice already given, though it may take a prescription for awhile and good nutrition after. Check into this one: Fosteum, click on the help w/payment button if your insurance won't cover.

Imho, if you're having stress, anxiety, weight issue it is a good idea to get a low sensitivity food blood test. Can't afford? Go off one food for a week and then eat it, I'm sure there are directions on the web somewhere on the order. I'd start with wheat and all things with gluten (lots of grains have gluten, btw). And yes, there is life after finding out you need to be gluten free. My son eats donuts, pizza, cookies, from the "dairy-free" case at the health food store.
;-) ~ jan

By MotherGoose
Posted February 28, 2009 at 6:41 am
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Linda:
Who is "they"?
Gym personnel do not have the education and training to be advising on injuries, conditions like osteoporosis, and other ailments. Weekend courses just do not cover all the knowledge one needs to render safe advice. A "little" knowledge is a dangerous thing. I am considering, for example, the rotator cuff at the shoulder which allows us great mobility BUT no great stability. Waving around a too-heavy weight at the end of this long lever arm invites muscle and tendon damage. if you ever took physics, you may remember the effect of levers. As we approach middle age and beyond, the rotator cuff is more prone to damage. That is just one consideration, for example. One does not have to "bulk up"a muscle to positively stimulate bone formation. Then, too, I often observe those working on their biceps -- all hunched over into an unsafe posture. What is being gained? -- except poorer posture. Achieving a decent posture gets little attention and it is a first line priority in osteoporosis management, regardless of one's age.
Maybe posture training is "not so sexy"as weight-lifting.
Lucy Buckleey PT aka Mother Goose

By YoungMum88
Posted February 27, 2009 at 11:22 pm
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Im so with you girls, i am naturally small and so are many many other women out there. Doctors straight away assume things and put it down to low body weight. I know there are alot of side effects from having anorexia and yes there are women who unfortunately have suffered from this. But guess what doctors, there are also many women who are thinner and not overweight like most of the world!!! Im so angry at this because i am 21 years old and 4 months ago was diagnosed with osteo and felt like my life was over. I have 6 fractures in my spine and also trying to look after my baby. They think it was caused during pregnancy but that didnt stop them hinting about my petite size. I also have been left in the dark, there just isnt any info out there and its SO frustrating!!!! Something needs to be done and theres no way i am going to take any of those drugs, the side effect ive read about is horrific.

By linnyd531
Posted February 27, 2009 at 7:09 pm
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hey mother goose, so what are we talking about w/regards to lifting weights. Is one trying to build muscle mass to support the bones? How can 5lbs really be all that effective? They say that if you can do 15 reps easily w/a certain amount of wt that is too light. I'm not sure how this all fits in w/osteoporosis. thanks for any info ....linda

By MotherGoose
Posted February 27, 2009 at 8:12 am
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Cfunk29:
Ten pounds is too much!! Five pounds may be too much.
Please do not try anything like weight-lifting when you need professional advice -- preferably from a PT knowledgeable in osteoporosis management.
There is a big, international symposium in Washingto DC in early April and I hope to learn more about all you young women with bone loss -- the runners, the gymnasts, those with pregnancy-related and lactation-related bone loss. This is apparently a neglected area in medicine. You all need comprehensive, coordinated attention and lots of guidance.
Lucy Buckley PT aka Mother Goose

By cfunk29
Posted February 26, 2009 at 11:40 pm
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I don't have much time to write but I am basically in the same situation. Have you heard of anyone our age being treated with medication? I'm not sure what to do other than take calcium. My doctor isn't familiar with any studies of premenapausal women being on medicine

By Lucy_N
Posted February 12, 2009 at 8:37 pm
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Hi there Ruby Lizard-
I just wanted to let you know that I had a similar experience-after four years with no period, and successful counselling, and maintenance of a healthy weight for over a year, I still hadn't gotten my period back and I was quite worried that it wouldn't come back. Then, I had to take the morning after pill once (a high dose of estrogen). And my period returned, and I've had one a month for three years. I think my body just needed a little jump start. Have you considered birth control pills for a period of time-I still had anxieties about weight gain and wanted to avoid them, but that is actually a positive thing-and afterall, what would be best is a beautiful, vibrant, curvy, healthy body that you treat with love and care.
Best of luck!

By sunrun
Posted December 5, 2008 at 10:52 am
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I completely agree. I think there needs to be more research done in younger premenopausal women with osteo, because there is still a lot unknown, while also taking into account body frame and bone quality for all women. I am not saying that we shouldn't recognize that we have this disease, it is a reality, but, the treatment and medical advice for it needs to be tailored to women depending upon their situation. I think that is why it is very important to educate ourselves and be prepared when going to a doctor, no matter what the condition or situation is.

By Rubylizard
Posted December 5, 2008 at 8:59 am
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exactly, i mean, no one knows for SURE when or how i got this disease. i know when i was a senior in high school i had a stress fracture in one of my foot bones and the doctor commented on how especially thin that one bone was. maybe other parts of me are just like that and no one would have known if they hadn't scanned me.
i naturally have a VERY thin frame and narrow bones. i've always had to get bracelets and rings downsized...even when i was a very healthy weight.
it's just the way women in my family are... on both sides of the family.
my mom's mother was 88lbs AFTER she'd had both my mom and my aunt. we found some of her medical records after she died. she was 5' tall.

and i think that if i was gonna break something, i would have happened earlier this year when we moved to a new house. i was carrying the heaviest things down two flights of stairs out of our old victorian house and bumping into this and that. i look like i'd been beaten! (i bruise easily)
but nope, i'm still here.

oh and that same doctor that was so mean to me also was SURE i was going to break my hip and DIE before my wedding last year. i know "older" people have a high morbidity rate, but why would that apply to an otherwise healthy 29 year old???????

UGH. doctors.

By sunrun
Posted December 4, 2008 at 12:13 pm
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yeah, I got the same message from my doctor- but she was fairly nice and just wanted to push the meds. No other discussions. That is why I am unsure about the lifting, activities, etc etc- doesn't the fact that bone quality may also somehow counteract or balance low density? What about the fact if you just overall have a lower bone mass since you are small to begin with?? I don't want to considerate myself so delicate just yet. I am going for a second opinion to see the best way to manage this disease given my situation.
Thanks for the replies!

By Rubylizard
Posted December 4, 2008 at 9:02 am
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i might just do that. thanks!

about the rubylizard name.... well my name's elizabeth, so lizard is a very common childhood nickname for that. so that just kind of stuck.... and then, when i got a job working in the juliette gordon low birthplace (i live in savannah, ga) in college, the girls working there decided that i "looked like a ruby" so they called me ruby...just like it was my regular name. even though i thought ruby was kind of an "old lady name" i just went along with it. so i kind of added the two together and it's been my screen name on many different internet places i go.

thanks!

By MotherGoose
Posted December 4, 2008 at 8:57 am
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Dear Rubylizard:
How did you create that name? Certainly it is unforgettable!
Yes, dear, you must be careful.
I am sooo sorry you did not get more out of your doctor than what you report. And a woman to boot!
It would be worthwhile for you to actually join NOF so as to get their mailings and a nice booklet with all sort of info. You can certainly go online to NOF and search out what you want, but sometimes we learn more when we have the info in hand. The membership fee is nominal and well worth it. Good luck!
Lucy Buckley PT aka Mother Goose

By Rubylizard
Posted December 4, 2008 at 8:44 am
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mothergoose...it infuriates me that my doctor was so incompetant and non-caring when she DX'd me with the osteo.... all they did was tell me that i was just so skinny and that's why i got it. then i was sitting there on the DEXA machine crying and holding on to my husband and they sent me home. didn't offer any advice or instruction. didn't tell me what i could or couldn't do. what i should eat, exercise or lift of not lift.
i've lifted VERY heavy things and just carried on with normal life aftewards. do i really need to watch my every step more than normal?

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