Check in--cheerleaders wanted

Posted by janism @janism, Jul 27 4:42am

I am trying to force myself to exercise because I need it for my osteoporosis and I am finding myself getting perceptibly weaker as I age. I'm not at all sedentary; I probably walk 2-3 miles per day just getting around and do lots of household stuff as guardian of a 6 year old and 16 year old, and I'm an elementary school teacher during the year on my feet all day. While that was fine when I was younger, my body is telling me that I need to be more systematic now. I want to keep being able to do the things I love, and exercise is clearly one of the ways to do that, but I hate it.

I want to start this thread as a place to check in with the things we find hard--exercise, nutrition, human relations, whatever--and a place to cheer each other on.

Interested in more discussions like this? Go to the Osteoporosis & Bone Health Support Group.

Profile picture for ou14mejc @ou14mejc

Walking, supplements, exercise are great but often do not take care of severe problems. My osteoporosis was severe and I was denied surgery because of it. I refused ALL bone medications because of the side effects. My doctor told me a fall with a broken hip could kill me and would never heal. My back is a mess with slipped discs and stenosis and I can barely manage. I have a torn rotator cuff and no cartilage in both shoulders, bone-on-bone in my neck and both knees. Knowing that I was in trouble, I finally agreed to start Forteo injections two years ago and I have gotten great improvement and I no longer am in the osteoporosis range. My back is so painful it has affected my quality of life and independence. Without those medications, surgery would not be an option. I am glad I finally listened to my doctors, but it is a personal decision to start those medications because once you start, there is no end. Keep up the exercise, vitamins, supplements and delay meds as long as you can but I would at least visit with my doctor about them if your osteoporosis is severe. I'm glad I did! Spine surgery is September 22nd!

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@ou14mejc Good luck to you in your surgery. I have similar challenges from back and neck injuries -- I even fractured my neck at C1 in a horseback riding fall and it was not diagnosed until 35 years later. Lucky I wasn't paralyzed. It never healed correctly and yes, I know the chronic pain you live with. My back is also badly inured from sports injuries. I may undergo surgery for my neck once my bones are strong enuf from Tymlos (now 10 months in), but it is a dangerous surgery. I can't do any upper body exercise to help build bone, due to that injury and also torn rotator cuff. Without the osteo meds, no chance of corrective surgery for many of us.

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Profile picture for willowmena @willowmena

@ou14mejc Good luck to you in your surgery. I have similar challenges from back and neck injuries -- I even fractured my neck at C1 in a horseback riding fall and it was not diagnosed until 35 years later. Lucky I wasn't paralyzed. It never healed correctly and yes, I know the chronic pain you live with. My back is also badly inured from sports injuries. I may undergo surgery for my neck once my bones are strong enuf from Tymlos (now 10 months in), but it is a dangerous surgery. I can't do any upper body exercise to help build bone, due to that injury and also torn rotator cuff. Without the osteo meds, no chance of corrective surgery for many of us.

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@willowmena That's a long time to have an injury like that go unnoticed. I'm nervous about getting my neck fixed as well because I have a dysfunctional voice box. It makes me short of breath so thinking of the swelling and being unable to breathe scares me. I failed my heart tests so I don't know when I'll get surgery now. It came as a complete surprise. I had no idea I had heart issues. Hopefully, the cardiac cath will show that I don't have a blockage and I can move forward. Plane tickets are bought, hotel is paid, doctor visits done....and then the "surprise" today. I am not sure I can lay through another MRI on my back and neck. I had a heart pet scan yesterday and I felt like I was in a torture chamber. You have to lay perfectly still for 20 minutes and you cannot move or adjust your body. My lower back was on fire and my neck was on a hard plastic incline. It still hurts today. I told them I couldn't hold both arms over my head that long because of the torn rotator cuff, torn labrum and bone-on-bone in the joint. They allowed me to leave that arm down. I hope I never have to do that test again! Good luck with your Tymlos. I got really good results with Forteo, except in the hips. I thought I was in business for the surgery and then the heart surprise! I guess it's good I had to get the EKG for spine surgery or I'd never know about the heart thing. Now that I found out about the heart problems, that leaves me with a problem of whether to continue the Evenity with a black box warning for heart attacks and strokes!

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Profile picture for ou14mejc @ou14mejc

@willowmena That's a long time to have an injury like that go unnoticed. I'm nervous about getting my neck fixed as well because I have a dysfunctional voice box. It makes me short of breath so thinking of the swelling and being unable to breathe scares me. I failed my heart tests so I don't know when I'll get surgery now. It came as a complete surprise. I had no idea I had heart issues. Hopefully, the cardiac cath will show that I don't have a blockage and I can move forward. Plane tickets are bought, hotel is paid, doctor visits done....and then the "surprise" today. I am not sure I can lay through another MRI on my back and neck. I had a heart pet scan yesterday and I felt like I was in a torture chamber. You have to lay perfectly still for 20 minutes and you cannot move or adjust your body. My lower back was on fire and my neck was on a hard plastic incline. It still hurts today. I told them I couldn't hold both arms over my head that long because of the torn rotator cuff, torn labrum and bone-on-bone in the joint. They allowed me to leave that arm down. I hope I never have to do that test again! Good luck with your Tymlos. I got really good results with Forteo, except in the hips. I thought I was in business for the surgery and then the heart surprise! I guess it's good I had to get the EKG for spine surgery or I'd never know about the heart thing. Now that I found out about the heart problems, that leaves me with a problem of whether to continue the Evenity with a black box warning for heart attacks and strokes!

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@ou14mejc Awful, what you are experiencing. I have trouble with the MRIs and the hard plastic table, as well. I bring fluffy towels to prop up under my neck and any other areas, particularly under my elbow to prop up the arm w/the rotator cuff tear. Also have a torn bicep in that arm. I don't understand why my neck injury was never described on the many MRIs I underwent until the most recent in April of this year. They call it a chronic, non-union odontoid fracture that is supposedly stable. The prior MRIs were of the lower cervical area and I guess they never focused on the neck! At any rate, you know you should consult with a trusted cardiologist since learning of your heart issue. Does time permit that? And potential swelling is scary, I would think. My friend had disc surgery at C5 and experienced some swallowing difficulty for about 2 weeks. Apparently that is to be expected and is the norm. You might reconsider your use of Evenity after the surgery given the heart issue. Not a lot of good options, but some people report following an anabolic with a different anabolic. Not sure how safe that is, however. Eventually, I too will face having to make a med decision after Tymlos. By the way,, I had a femoral artery partial blockage followed by an angioplasty at age 41, when I was training for my 4th marathon. 3 days later, I was out jogging. (Not recommended!). It's an easy procedure done as an outpatient nowadays. Please let us hear how everything went.

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Profile picture for kfhoz @kfhoz

@summera1 Three times per week I was jumping/dropping off a 12 inch (30 cm) step and immediately jumping as high ask I could. I was doing this 40 times in 4 sets of 10 drop jumps. That was a total of 120 "double jumps" each week.

Key from Osteo-Gains that makes a difference for me are: 1) put 5 seconds rest between each double jump 2) take a 30 second rest between each set of four double jumps 3) only do 20 jumps per day. These rests and limitations are because your bones start ignoring forces after that. Osteo-Gains also does both jumps from the floor, but I think that I will still try to jump down from a rise for my first jump in each pair of double jumps.

Here is one of the many references that was guiding my practice:
https://melioguide.com/weight-bearing/jump-training-osteoporosis/
My key osteoporosis bad T-score is in my left femoral neck. I suspect this is in part due to decades of favoring my left leg against big or sudden forces due to osteoarthritis in that knee. Impact is the only exercise with some hope for improving BMD in the neck of the femur. Of course my knee objected to the drop jumps also, but my future-surgeon said that I could not do actual damage to it this way.

Thanks for asking Summera1.

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@kfhoz I understand that "sit to stand" exercise is very beneficial to the core and hence the hips. I can't do jumps because of knee pain from torn meniscus and cartilage but a 3 kilo exercise ball held in my lap and 30 sit to stands give me a nice core workout, together with a few other core exercises. I also use a treadmill since I can no longer run and tolerate the impact. I was a lifelong athlete and miss it so much. I envy everyone who can still do the workouts!

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Profile picture for willowmena @willowmena

@ou14mejc Awful, what you are experiencing. I have trouble with the MRIs and the hard plastic table, as well. I bring fluffy towels to prop up under my neck and any other areas, particularly under my elbow to prop up the arm w/the rotator cuff tear. Also have a torn bicep in that arm. I don't understand why my neck injury was never described on the many MRIs I underwent until the most recent in April of this year. They call it a chronic, non-union odontoid fracture that is supposedly stable. The prior MRIs were of the lower cervical area and I guess they never focused on the neck! At any rate, you know you should consult with a trusted cardiologist since learning of your heart issue. Does time permit that? And potential swelling is scary, I would think. My friend had disc surgery at C5 and experienced some swallowing difficulty for about 2 weeks. Apparently that is to be expected and is the norm. You might reconsider your use of Evenity after the surgery given the heart issue. Not a lot of good options, but some people report following an anabolic with a different anabolic. Not sure how safe that is, however. Eventually, I too will face having to make a med decision after Tymlos. By the way,, I had a femoral artery partial blockage followed by an angioplasty at age 41, when I was training for my 4th marathon. 3 days later, I was out jogging. (Not recommended!). It's an easy procedure done as an outpatient nowadays. Please let us hear how everything went.

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@willowmena It definitely sounds like we are on the same journey. Cardiac cath and possible stent June 2nd. Vacation is looking unlikely, and maybe spine surgery as well….sigh. Good luck to you and I pray you have no future medical emergencies. For ALL of us, my prayer is a new osteoporosis medication that doesn’t feel like we have to “ pick a poison.”

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