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Osteoporosis Message Board

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I have mixed feelings about all this. The only fracture (that I am aware of) that I have ever suffered was in my left foot when I was 19 years old in 1991. I was studying ballet and modern dance three hours a day six days a week (in addition to taking 18 credits in college and working 26 hours a week) and I banged my foot top side down on a hard floor. I bruised it pretty bad but I kept dancing and jumping on it until finally a bone cracked. Not fun!

I was not diagnosed with osteoporosis until 2006 when I repeatedly nagged my doctors to give me a dexa scan. I had a total hysterectomy and both ovaries removed a year prior and was having (and still am) a terrible time trying to find hormonal balance on hrt. My other risks factors include being underweight, former smoker (quit the day of my osteoporosis diagnosis in 2006), history of anorexia, family history, took Lupron for 4 months, lactose intolerant, hypothyroidism and using Synthroid for over 18 years, and the list goes on. My scores were -3.2 in my spine and -1.8 in my hip.

Because of my age most doctors have not taken my concerns about osteoporosis or dexa results seriously. I guess it's the opposite problem as others. I went to a rheumatologist on my own after my dexa scan and while he did do the standard vitamin D and calcium excretion tests, he found nothing unusual and simply prescribed me Fosomax, refered me back to my primary doctor and sent me on my way with no further explanations or help. I was not satisfied with just taking a pill that I read and heard from others (including my Grandma) that the side effects were horrible and the risk of long term damage from the bisphosphonates was a concern to many. My body is VERY sensitive to chemicals and I have a terrible time with drugs. I can't even handle many vitamin pills except vitamin D tablets. And I have bouts of chronic nausea and gastritis.
And THEN when I reached out for support about my concerns to others I felt might understand my situation, namely various online groups (not this one :)) I was told about the whole bone quality versus quantity and the crudeness of dexa scans and how I shouldn't be too worried, that at my age my quality of bone is probably better than someone who is sixty or seventy with the same scores. So what am I supposed to believe? Why wont anyone take my concerns seriously?

I have decided on my own that I am not going to wait until disaster happens to do something about my bones whether they are truly healthy or not. I already have some curvature of my thoracic spine that is very uncomfortable and have to fight to keep a straight posture. I no longer have the beautiful straight and muscular back I had when I was dancing. It disgusts me whether anyone else cares or not. I still can't get any doctor to do an xray or MRI since my pain could be explained away as part of the fibromyalgia I now have. I have not lost any significant height, maybe 1/2 of an inch, but I am still concerned. I have sought out a physical therapy and pain management program on my own and am going to the gym and working with a physical therapist doing weight bearing and cardiovascular exercises on the machines as well as pool therapy. On my own for the last year and a half since my diagnosis I have been lifting dumbells at home and doing resistance exercises with theraband. I also walk a lot. None of this has been easy with fibromyalgia pain that has me in tears quite often. Also on my own since my diagnosis I experimented until I found a calcium/D supplement I can tolerate (Viactiv) and take that daily, along with another vitamin D supplement on it's own and cod liver oil. I have begged and fought with many doctors to let me try various hrt regimans (including progesterone and testosterone as well as Estradiol) until I find something my body feels good on. All have their opinions on what is safe or effective but in the end it is me who has to live with it so it needs to be my choice. I take a hormone patch (Vivelle Dot) right now that i am not altogether happy with but my body does absorb it and my estradiol levels are much higher now. My dexa scores improved significantly in 2007 (-3.0 and -1.4) so I must be doing something right.
I am not going to fool myself that I am safe and because I am young I don't have to worry about falling or fracturing something and dont have to do anything about it. However, I am also not going to put my life into the hands of anyone else and take drugs or hormones or surgery that I am not comfortable with, no matter what threat of my health hangs over me. I already allowed that to happen to me in the past. It's great that we have more choices and more information to help ourselves now than just a generation ago had. We have to do what we feel is best for ourselves with all the information we can gather. We are all unique and one size does not fit all.

ps. This last dexa that I had the technician measured more parts of my body than before. She measured my wrists and I assumed since I have tiny wrists that are not very strong that my scores there would be lower. To my surprise my wrists were in normal range! I can't remember the exact score but something like +.1? I used to push a heavy mail cart around a huge medical complex everyday for my job before I was hit with fibromyalgia (now I work part time as a records clerk) so maybe that has something to do with it? My Grandma has broken her wrists several times just lifting grocery bags. I will have to find out what her wrist scores are if she knows. Interesting thread!

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