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I cannot seem to get the "find friends" function to work right because it says I am the only one within 2000 miles on this site that has osteoporosis in their low 20s- when I know this is wrong. I am looking for other women who are close to my age (20) with osteoporosis.
I am looking for support as I am having a hard time with this diagnosis and what a halt it has put on so many of my activities that I enjoy.
Exercise Fractures Fosamax Osteopenia Anxiety Actonel Anorexia Menopause Yoga and Pilates Osteoporosis Stress fractures Cortisol Stress Osteonecrosis
Hi Jaden:
Tell us more about your situation in detail so we can provide some help.
Woody McMahon
NOVA Osteoporosis Support Group Leader
Jaden,
I am slightly older than you at 33 with osteoporosis in the spine and osteopenia in the hips. I was just diagnosed about 3 weeks ago, and went from being an energetic, healthy marathon runner to feeling like a crippled, feeble old woman. I live in Northern California. I also am looking for support and good information as far as what to do, where to go from here. Whereabouts do you live?
Jaden,
I'm a little older too (32), but found out I have osteoporosis a couple of months ago. At first it was quite a shock, but as I've learned more, I'm not nearly as scared & I'm starting to see it as more of a challenge that I can beat. Osteoporosis is actually fairly common in young people. About 1 in every 150 30-yr-olds has osteoporosis. In some ways we are fortunate to find out now because there are a lot of young people out there who have it and don't know. At 20, you have a long time to work on building up your bone density & correcting for any secondary causes. My doctor told me Crossfit is the best exercise I can do to build bone density. It might be something you could look into if you aren't able to run marathons anymore. It can be scaled to any athletic ability, but is hard enough to be challenging for anyone. If you have the discipline & perserverance to run a marathon, I'm sure you will do well once you learn what you need to do to build your bone density!
Hi Jaden, please check the sidebar Discussions. Click Pre-menopausal women which will bring up all the previous discussions and posts for younger women.
Hi Woody,
I found out I had osteoporosis about a year ago, but the two stress fractures I have gotten within 6 months of each other has really hit me hard in terms of the limits this disease will be putting on my life. A few weeks ago, it seemed like I would go through moments of unbelief that I am actually going through at this time in my life. I consider myself a high energy, optimistic person with an excitement for life. Having to rest right now (again...) is so against my nature and difficult.
My favorite activities all include movement and being outside. The last time I saw my doctor, she mentioned the elimination of running (plain and within other sports). In-between the two fractures, my exercise built up to running, the eliptical, or weightlifting--each done twice a week. And with that, I still got another stress fracture. I don't know what I will be doing when I can again return to exercise and I am also struggling with the likely options: I am not very fond of bicycling and swimming, and yoga and pilates do not serve my cardio desires :) I am working on developing a more favored approach to these activities, but it is definitely still in the works.
At this point in time, I am experiencing the different stages of loss, especially anger. Thinking of how I was able to freely move about and do activities I enjoy just a year ago compared to the state I am in now makes my heart heavy.
I would like to ask how have others dealt with these feelings of loss and anger? Were you surprised to find out your diagnosis? What has been effective in helping you cope or given you hope?
hope this was not too detailed.
Hey HRB Girl,
I can completely relate to how you feel. I recommend this site for finding out about what is new out there. Have you come across any prune discussions? I am currently eating more than I would have imagined-I figure it cannot hurt. In terms of treatment though, I still have not settled on a medicine as I have not heard of one that has been safely tested on pre-menopausal women and I would certainly like to have children later on. Have you found a doctor that specializes in osteoporosis of younger women? I live in southern CA.
Bethany,
I am glad that your anxiety has subsided with you learning more--mine has just increased, but maybe I am jumping too far ahead of myself. I also did not know it was that (relatively) common. I agree with you that it is better to be aware of it to be able to be more proactive in improving the situation.
In talking with my doctors though, I have learned that the bone mass one can add after 20 is very minimal. I think peak bone mass is achieved at about my age. And because I am pre-menopausal, I do not know yet of any drugs that do not cause reproductive harm-which is a big concern for me. I am still continuing the search...
I'm going to look into CrossFit--I haven't heard of this before.
good suggestion sdivas- I'll look into those.
-Jaden
Jaden,
I have not found a doctor who specializes in osteoporosis in younger women. The doc who I saw was just a primary care physician who obviously knew very little about osteoporosis, other than the basics. She did not seem willing to give me a referral to a specialist, but I might pay out of pocket anyway. I gave up running the day I found out and now just use the elliptical, walk uphill fast on the treadmill to meet my cardio needs, and weight train, but I am still afraid of overdoing it and causing more damage than good.
Bone building actually peaks betw. the ages of 13 and 24, and you can still create bone mass until your early 30s before it really drops off. You are really blessed that you caught it so early because I think with adding calcium, Vit. D, and eating a healthy diet, along with weight bearing exercises you can probably increase a fair amt of bone density, although maybe not as much as someone who never had it to begin with. I started taking Fosamax right away. The only major side effect is osteonecrosis of the jaw, which is so rare that the benefits definitely outweigh the risks. I have heard about the benefit of prunes, but have not looked into it much. I like prunes and occasionally buy them so I will have to check it out.
I have been experiencing a lot of emotions the last few weeks since my diagnosis. Fear and anxiety have been at the top of the list. It seems the more I read about it, the more anxious I become. I had to stop reading about it cuz it was making me too stressed. I am definitely angry at the doctors I have seen over the last decade, because I have always asked about bone density scans due to my high risk factors (very thin, irregular periods, enormous lack of calcium and D my entire life, anorexia when I was a teenager, etc. I was always told "oh, you're young, healthy, don't smoke/drink, do weight bearing exercise--you have nothing to worry about." Finally a nurse practitioner listened to me and gave me a referral--and sure enough! Had doctors listened to me years ago I may have caught it early and nipped it in the bud. But now it is fairly severe and I have to completely alter my lifestyle. Frankly, I am scared to death of ending up in a wheelchair at a very young age. I am angry at myself for not taking care of myself all my life, for not consuming products with much calcium/D, for abusing my body. I am also jealous of my husband, who is still able to run marathons, who is an avid cyclist, runner, swimmer, who can still go out and do these things. I myself hate swimming (chlorine makes me gag), and I am afraid of cycling cuz if I am hit by a car (very likely around the town we live in) or fall off and break bones, I am much more likely to suffer fractures. I am just so angry and frustrated with every aspect of this.
Hi Jaden:
Thanks for the reply. There are many parts to rebuilding your bones. Most of them are lifestyle in nature. Lifestyle balance is the key to getting this condition under control. At first glance, you look like your are exercising too much. The body will fracture if activity out matches strength. After you read my replay, please send some specifics like bone density numbers, FRAX score, nutritional intake etc. It will be interesting for the rest of the participants to read. We may even set up a separate discussion on this topic.
I recommend 5 important lifestyle changes for my clients who have been diagnosed with osteoporosis/osteopenia.
These are:
1. A diet that contains 50% fruits and vegetables. Fruits and veggies contain greater amounts of water and minerals with generally lesser amounts of
animal protein.
2. Adequate water intake for maximum hydration. Water is very important in helping the kidneys regulate pH and detoxify the body.
3. Daily stress reduction activities. This helps lower cortisol and homocysteine levels reducing calcium loss.
4. Year round vitamin D3 levels in the 50-80 ng/mL (or 125-200 nM/L).
This should be confirmed by 25-hydroxyvitamin D testing.
5. Sufficient weight bearing exercise to stimulate balance and muscle growth which is essential for bone strengthening determined
You should score yourself on FRAX which looks at risk of fracture before you decide to give-up too many activities. You can find the FRAX tool at http://www.shef.ac.uk/FRAX/ and go to Calculation Tool at the top.
I also suggest Dr. Cannell’s site and recommendations for vitamin D that are top notch www.vitamindcouncil.org.
Dr. Lee’s book What Your Doctor May Not Tell You About Menopause http://www.johnleemd.com and
Dr. Holick has a great website and book called The UV Advantage. Worth a look http://www.uvadvantage.org
Gillian Sanson has a great book called The Myth of Osteoporosis. She presents some compelling reasons pay less attention to DEXA scores and move to a healthier lifestyle. http://www.gilliansanson.com/
If you have further questions please feel free to email me at
bebonestrong@sequoiahealth.com.
Woody McMahon
Woody,
Is there a frax calculator for people under 40?
Jaden,
I didn't realize you had already been fighting this for a year. Right now I'm hopeful that the diet and lifestyle changes I'm making will help, but if I don't see bone density improvement, I know it will be hard to stay positive. I can imagine how hard it is to be faced with having to give up a sport you love. I hope you are able to find something else you enjoy that builds your bones. Although bone building slows as we get older, I've seen people on here even older than myself building density with diet and exercise, so it's definitely still possible.
Bethany
HRBGirl, the emotions you are feeling are very normal and natural. Allow yourself the feelings and use the anger as motivation to education and formulate a plan for your osteoporosis. Please try not to worry about the future. Stay in the moment. I was diagnosed at age 50 and probably had osteoporosis for many years prior. I'm now 62 and fracture free, so while you are coming to grips with this disease, hold on to those of us that have some experience living with bone loss. If you doctor will give you a referral to work with a physical therapist that has knowledge of bone loss, you will have an opportunity to share the activities that you like and with an overall evaluation, you may not have to give up your favorite activities .... or learn alternative moves as I have done for my ballet class. There is so much information on this community that it can become overwhelming. Take an osteoporosis information fast for a few days. But please try to stay calm and reduce stress. Trust that you will soon learn to live with this disease .... and that bone loss is a small part of your life. Please do not define yourself by osteopenia/osteoporosis. Once you have a plan in place, you will feel a sense of control and begin to enjoy your quality of life.
Hi bethanyb:
You can use this one.
http://courses.washington.edu/bonephys/FxRiskCalculator.html
Woody
Jaden,
I totally understand your feeling. I found out my mother had Osteoporosis when she was in her 70's and I was then in my 50's. I wanted to catch it early. I knew I had a good life style, I drank lots of milk and consume other foods fortified with vitamin D, very active, an outdoors person, etc. My MD told me I didn't need a bone density test until I was 60 and he was positive I didn't have Osteo. Finally when I was 60 I insisted for a bone density test.
I got the report from my MD . He was shocked and so was I. I had severe Osteoporosis. I was mad at myself for not insisting on the test before. But in my mind I really didn't think I had it either.
My family MD put me on increase calcium with D and Fosamax. Every two years I had bone density test and my MD said keep taking the meds. and I was fine. Then after six years my MD said I must not be taking my meds because I had lost 12% bone density. WHAT! He said there was no other treatment for Osteo.
I learned a lesson - ask for a copy of all your tests to see the report for yourself. I would have questioned my MD at the first sign of bone loss.
At that point I searched and found an Endocrinolost that specialized in Osteo. in Wenatchee WA. She ordered simple, painless tests. The outcome, I was severely lacking in vitamin D causing me to eliminate a lot of the calcium that I had been taking because D is need to bind with calcium to make bone cells.
My suggestion ask your MD for a blood test to check your viatmin D. Then ask for a copy of the test report. My friends and I found MD's in our area told us our level was normal but I found out from the specialist I was way below normal. The specialist said I was severly lacking in vitaimin D, my score was 22. She adjusted my treatment to include high dose of vitamin D plus the increased calcium with D and Actonel to get my vitmmain D score above 50 and then adjusted it down to 5000 IU every other day to maintain my level over 50.
Result - I have gained 6.3% bone density in two years so there is HOPE for you. I was told my exercise did not help my body in building bone density because my chemistry was not in balance. Now that it is in balance everything I do to build bones is a bonus.
Locate an Endocinologist through your insurance co. and then ask those MD's nearest you if they specialize in Osteoporosis. I have to travel 145 miles to see my specialist but I can have all my tests done locally and faxed to her. This saves travelling just for tests. Diagnosis, my body is not sensitizing the sun UV rays in my skin to make enough vitamin D so I have to take vitamin D supplement year around.
My specialist sends follow-up reports to my family doctor and he is getting an educaton! I get a copy of the test results also.
My almost daily muscle spasms ceased immediately. Over time, I see a number of improvements - skin, hair and over all health. I can tell if I forgot to take my vitamin D and my vitamin D level drops below 40 I start getting muscle spasms.
My daughters in their 40's then asked their MD for bone density test and vitamin D blood test. They both have osteopena and were serverly deficient in vitamin D. Thank goodness they found out when they did.
Know your vitamin D score. The range is 0 -100. Visit the vitamindcouncil.org web site to learn so much more about vitamin D.
You can get your chemistry corrected which will benefit you in more ways than one. I had a bone fracture, my PT taught me the correct way to do things to reduce stress on my bones. Running may not be in the cards for you but there is many other forms of exercise and activities. The impact of running, think about it.
I am so glad you wrote more about your health problem. My thoughts - if plan A isn't working then I seek out plan B. this is your plan B asking for suggestions from others through this forum. Good luck in your search for a specialist. Let me know if you cannot find one. I can ask my MD if she knows of someone in your area.
Thank you so much to all have offered advice and support. I needed to step away yesterday to digest it all, but I have gathered several new points that I will bring to my two physicians who I see next week. I will let update the site of my next steps of action.
Thank you again for all the support.
Hi Jaden,
I am glad you are getting much needed support from everyone on this forum.
Please don't feel that you have to give up on all the activities you once did, it may mean modifying them slightly to avoid trauma to your bones. Remember if you hadn't found out about your osteoporosis you would still have been doing the same activities, wouldn't you?
I sometimes feel the fear of breaking a bone is the worst part of this condition, not the condition itself. I was told by my Specialist if I didn't continue with the osteoporosis treatment I would break another rib within 6 months (I broke a rib for the first time while on treatment!). Well, it is 2 years on and I'm still okay!
It is also worth remembering that 1 in 3 women will get osteoporosis later in life, so it is very common and the majority of these women will never even know they have it because they won't break anything.
You are very unlucky to be diagnosed so young, but with careful management of the condition you can still lead a normal life. I hope you are able to overcome the understandable anger you feel at the moment and continue to enjoy everything you did before.
Hi Jaden,
I'm 31 but was diagnosed with osteopenia at age 12 or 14 (I've had it for so long I forget). I went through my 20's worrying about my bones constantly. I'd be glad to give you any support you need!
-Casey
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