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 MotherGoose
Posted November 29, 2008 at 7:38 am
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Sunrun:
Nutritional therapy??? Do you mean a decent diet?
Surely, you need to be serious about getting good nutrition into your poor body! Acknowledging that your diet is poor is not enough. Seeking a good dietitian -- a real RD -- is a start. But even more, we have osteoporosis centers around the country. I would expect that they can help you manage and improve your health for your future. This is serious, Sunrun, and a poor diet and little or no estrogen in your body (evidenced by no menses) has and is taking its toll. As for medications, I am not sure which might be applicable at this point, but open your mind to the knowledge that you gain from those who have worked with cases such as yours. In the meantime, start getting on the ball for adequate nutrition -- not just dairy, but protein, and lots of fruit and veggies along with complex carbs and vegetable oils.
NOF lists the OP centers in the USA and you might check to see what might be near you that has an interest in younger women. Within this discussion group, we have heard from many young mothers who hav suffered fractures and have problems taking care of their children.
Lucy Buckley PT aka Mother Goose

By sunrun
Posted November 29, 2008 at 5:11 pm
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Thanks for your reply. Do you mean I can find a doctor who specializes in osteoporosis under the Patient Info section on the website? Or, are there actual centers? Since I am a student, I have my school's insurance, so I am worried my coverage will be limited. And, I really cannot afford to pay out of pocket because I don't have a full-time job because of school. But I am definitely eager to check it out, maybe something can be worked out.

Since you are a PT, maybe you could help me out with this one- my work involves handling a lot of animals, all of different sizes, which at times is a bit strenous. Do I need to now be extra careful lifting them, etc? I haven't had problems with my back, but now of course I am scared and don't know what my limitations should be. Or, maybe if there are some exercises that could strengthen the back so that I can be more protected for the time being?
I do believe the nutritionist is also an R.D.
I thank you for your correspondence!

By Rubylizard
Posted December 3, 2008 at 8:34 am
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how long did you NOT have your period? i am almost 30 and haven't had my period in three years due to being underweight because of my natural body composition combined with a huge amount of anxiety problems i'm trying to overcome.
yesterday i went to the doctor and we discussed some recent blood test results and my hormones are still kind of low and she was freaking out that i may never get my period back because she thinks 3 years is too long so she's sending me to the gynecologist to find out.
i am having trouble finding information on the subject.

By sunrun
Posted December 3, 2008 at 12:35 pm
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Rubylizard:
Yes, I agree, it is very hard to find info on this subject, let alone the best treatment for people our age! It has been about 4 years for me. For me, it is underweight, poor nutrition...(I am also naturally small), but also +++stress. From what I am researching, it seems as if nutritional therapy works well, but even after that it may take some time to get it back. Although, this is the case more for eating disorders- I am not sure about in the case of anxiety disorders though. I am not sure how your eating habits are or if you are getting enough with what you should be- perhaps a nutritionist may work if you feel that you are lacking anything, I am going to explore that option. I also went to a gyn to rule out internal problems, so I think that is a good idea.
Thanks for your reply!

By MotherGoose
Posted December 4, 2008 at 7:12 am
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You should definitely NOT be lifting anything more than 10-15 pounds. And --- use your best body mechanics to do even that. No forward neding from the waist --keep a straight back as you bend your knees and hips and face the item to be picked up. No twisting of the spine either! "Nose, knees, toes -- all in the same direction".
Check on what has already been posted about "body mechanics" or "safe body movement" amongst the discussions. Also check for the same at the NOF website. This is a very important way to protect your back! Proper posture is also vital.
Where are you located?
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?

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 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 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 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 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 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 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 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 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 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 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 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

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