Younger than usual with severe osteoporosis

@healthmatters,

For what it's worth, I read an article that stated - and I forget the exact verbiage - that standing on one leg for one minute three times per day will help to strengthen the femur/hip. Apparently, every little bit helps. Anyone?

Cheers!

Sorry to meet because of osteoporosis! But here we go. Maybe we can help each other. I'm 58 and got extreme pain in my pelvis while carrying some groceries. It turned out to be insufficiency fractures in my sacrum, plus a transverse fracture in my sacrum. It has healed now but the question was “why”? My GP ordered a DEXA scan and I was shocked to learn that my spinal T-score is -4.0 (hip not so bad, at -2.4). I have a very active life and a mostly-healthy diet that includes plenty of calcium. Like you, I’m trying to navigate the implications for my life. All of the clinical guidelines that I can find say medication is recommended, though there are serious and unserious side effects to many of them, and I wonder about long-term implications for those of us who could potentially be taking meds for 30”+ years!
I have done a lot of sports over my lifetime including running, hiking, biking, cross country skiing, and mountain biking. I want to continue my favourite ones (mountain biking and cross country skiing) but I now I’m afraid of fracturing if I fall.
I have started spine stability exercises that will help me hold my spine in neutral (which reduces the stress on the vertebrae and thus makes them more resistant to fracture).
I know that weight bearing and impact are important for maintaining the bone density that we have left. But!!! - I am not sure how much weight bearing my body can handle without fracturing.
I am learning as I go and look forward to exchanging information with you and with others on the forum.

I'm glad you're here, but feel the same way--I wish it wasn't because we have OP.
A lot has happened since I started this thread. I learned so much about the condition and treatments, both natural and pharmaceutical, and I decided that my bone loss was significant enough that I needed meds.

I did finally get approved for Evenity, an anabolic (grows bone). Fortunately, I had had only had one Prolia injection.. Anymore than that, and it wouldn't have been so easy to change course. I've now had 7 of 12 sets of monthly Evenity injections. Fingers-crossed I get good results.

Like @bcstephens, I don't want to spend the next 40+ years "...being so careful to not fracture something and restrict myself from doing the activities and exercises I love."
That being said, I have had to weigh the risks of some activities, and make decisions about what I feel I can safely do.

As far as weight bearing exercises, they are good for bones, but must be done safely with supervision by someone who has had special training on working with people with OP. Impact training is even more important. It's what stimulates bone growth. Again, it requires supervision by a trained professional. These things can be done safely, and they DO work
(https://connect.mayoclinic.org/discussion/onerno-exercise-based-program-proven-to-work/)

This group has a wealth of information and experience. Dig deep into the coversations, and learn all that you can so you can make the best decision for your treatment.

Sorry to meet because of osteoporosis! But here we go. Maybe we can help each other. I'm 58 and got extreme pain in my pelvis while carrying some groceries. It turned out to be insufficiency fractures in my sacrum, plus a transverse fracture in my sacrum. It has healed now but the question was “why”? My GP ordered a DEXA scan and I was shocked to learn that my spinal T-score is -4.0 (hip not so bad, at -2.4). I have a very active life and a mostly-healthy diet that includes plenty of calcium. Like you, I’m trying to navigate the implications for my life. All of the clinical guidelines that I can find say medication is recommended, though there are serious and unserious side effects to many of them, and I wonder about long-term implications for those of us who could potentially be taking meds for 30”+ years!
I have done a lot of sports over my lifetime including running, hiking, biking, cross country skiing, and mountain biking. I want to continue my favourite ones (mountain biking and cross country skiing) but I now I’m afraid of fracturing if I fall.
I have started spine stability exercises that will help me hold my spine in neutral (which reduces the stress on the vertebrae and thus makes them more resistant to fracture).
I know that weight bearing and impact are important for maintaining the bone density that we have left. But!!! - I am not sure how much weight bearing my body can handle without fracturing.
I am learning as I go and look forward to exchanging information with you and with others on the forum.

I'm glad you're here, but feel the same way--I wish it wasn't because we have OP.
A lot has happened since I started this thread. I learned so much about the condition and treatments, both natural and pharmaceutical, and I decided that my bone loss was significant enough that I needed meds.

I did finally get approved for Evenity, an anabolic (grows bone). Fortunately, I had had only had one Prolia injection.. Anymore than that, and it wouldn't have been so easy to change course. I've now had 7 of 12 sets of monthly Evenity injections. Fingers-crossed I get good results.

Like @bcstephens, I don't want to spend the next 40+ years "...being so careful to not fracture something and restrict myself from doing the activities and exercises I love."
That being said, I have had to weigh the risks of some activities, and make decisions about what I feel I can safely do.

As far as weight bearing exercises, they are good for bones, but must be done safely with supervision by someone who has had special training on working with people with OP. Impact training is even more important. It's what stimulates bone growth. Again, it requires supervision by a trained professional. These things can be done safely, and they DO work
(https://connect.mayoclinic.org/discussion/onerno-exercise-based-program-proven-to-work/)

This group has a wealth of information and experience. Dig deep into the coversations, and learn all that you can so you can make the best decision for your treatment.

I am sorry you are going through the big challenge of osteoporosis at your young age, but you have come to a great source to help guide you through this. I am 74 and just found this site a few weeks ago after recent sacral insufficiency fractures were found after MRI and CT scans. Like you, I was initially diagnosed when I was 56, and after a very brief time on Fosamax and then six years on Fortical, opted to stop and focus entirely on diet and exercise. It seemed I was doing everything right, until this recent Bone Scan showed a significant decrease. I learned from this group to ask for a referral to an endocrinologist and that was the best and most successful medical intervention I could have found. She is guiding me through the process, and has looked carefully at all of my blood work, called the radiologist to get the age of the fractures, contacted other specialists about some questionable blood results that my primary care physician said were okay (Serum Protein Electrophoresis) and then changed her suggested course of treatment from Forteo, then Reclast, to only Reclast because of the blood analysis. After spending weeks reading the experiences of women posting on this site, and following up with suggestions, I now feel less anxiety and plan to go ahead with the first Reclast infusion that is being scheduled. It's not an easy path or one size fits all, and there is so much research and work that needs to be done to help find better choices for those of us with this condition. I wish you best of luck and am so glad you have found this source at your young age!

Yes, it is unfair that you have osteo with such an active lifestyle and plenty of calcium. I am sure your doctor is measuring how much calcium you ingest is absorbed (a blood or urine test). I know my specialist likes her patients to get their calcium from food.

I haven't fractured yet. All I can add is that biking isn't weight bearing and neither of your current favorite sports are a good idea. I walk fast (not stroll) and lift 8 lb weights, the latter amount on my doctor's advice. Be sure and engage in balance exercises and keep flexible, but avoid twisty exercises (or strong twists).

Pill medication isn't bad. The risk of side effects are there, but what isn't often shared is their frequency. Plus, you have to weigh it all against the worse case scenario of a fall on your rear that nails your spine -- the risk is being bedridden and in chronic pain. I wouldn't dare risk a fall and neither should you.

Thanks for commenting. I'm glad you've been fracture free to this point. Way to go!!!
I've substituted vigorous walking for biking, so I can keep the risk level down while I decide what chances I'm willing to take, or not take, going forward.
To build my fracture resistance, I started meds (alendrolate) and I started a supervised program of non-twisting, spine stabilizing exercises and lifting of 5-10lb weights. So far, so good, though it's very early days.
On the subject of weights: I'm curious if your doctor has a rationale for the 8 lb weights. Do you know what led him/her to recommend that number?

Thanks for commenting. I'm glad you've been fracture free to this point. Way to go!!!
I've substituted vigorous walking for biking, so I can keep the risk level down while I decide what chances I'm willing to take, or not take, going forward.
To build my fracture resistance, I started meds (alendrolate) and I started a supervised program of non-twisting, spine stabilizing exercises and lifting of 5-10lb weights. So far, so good, though it's very early days.
On the subject of weights: I'm curious if your doctor has a rationale for the 8 lb weights. Do you know what led him/her to recommend that number?