STOP! Don't do this if you have osteoporosis

Posted by isabelle7 @isabelle7, Jul 7 8:35pm

I am starting this thread hoping people will post things they've done that they have regretted, for one reason or another, when suffering from osteoporosis.

I'm going to start the conversation with a list of things we've learned already, and we are newbies!

1. Lift objects heavier than recommended by your physician (for my husband, that means nothing heavier than 5 pounds right now, with 3 fractures).

2. Don't bend at the waist! He got a fracture bending to empty the dishwasher.

3. Be cautious when driving - avoid rough roads, bumps, and go very slow over speed bumps.

4. We had planned to go on a boating tour (on a commercial fishing boat) on the ocean. After seeing a boat rocking and bouncing over choppy water we decided not to go.

5. Do not slouch when sitting in a chair or couch. If you're going to rest for any period of time on a couch elevate your legs (per our physical therapist).

6. Do not try any exercises until you have cleared it with your doctor, especially before your doctor confirms your fracture is stable.)

Please add to the discussion. I think this could be useful to people, especially people new to this.

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

kayabbott | @kayabbott | Nov 2 7:34pm

In reply to @elisabeth007 "i guess different scales are used in different places. Here -2.1 is considered osteoporosis" + (show)

Tis what the doctors listed for a post-menopausal woman, the ranges for normal, osteopenia, and osteoporosis. Here are some pubs that give background info and list -2.5 as the T score boundary for osteoporosis in older women: https://www.niams.nih.gov/health-topics/bone-mineral-density-tests-what-numbers-mean https://www.ccjm.org/content/87/4/205

stuffy | @stuffy | Nov 3 11:49am

In reply to @stuffy "thank you! Does anyone know about the relative merits of DEXA, DEXA including trabecular bone scan..." + (show)

I've done a little more research and found out:
- something called Bone Scan to determine density of bone was approved in 2022 (bonescan.com) and it probes the tibia to determine tissue resistance to microindention. Small risk of infection. They claim this isn't conclusive, which sounds like they mean it's a clue.
Mayo Clinic has it available, which seems like a bit of an imprimatur.
- REMS Echolight includes TBS (trabecular bone scan) which is supposed to be more accurate in calculating bone quality as opposed to just quantity. Ultrasound, not radiation, and not very expensive.
- some standard DEXA scans include the TBS software. Ask.

njx58 | @njx58 | Nov 3 12:47pm

In reply to @stuffy "I've done a little more research and found out: - something called Bone Scan to determine..." + (show)

Search on Echolight in this forum. Several threads which you should find helpful.

mariewms | @mariewms | Nov 4 7:20am

Good topic. I have severe osteoporosis in my spine. I will share how I fractured my L1, requiring spinal fusion. My daughter was visiting with her 3 little ones. All 3 of them woke up crying one morning and in my attempt to help her, and without thinking, I lifted a heavy toddler out of a pack n play. Many of you know the pack n play sits really low on the ground and it's impossible to use good body mechanics when lifting a child out of one. I should have realized the risk! My neurosurgeon said the movement I did while lifting put all the strain on the lumbar spine, which is the weakest part of the spine. I am SO careful now about lifting. Keep back straight and bend knees so the quads are doing all the work, and not your spine!!!

jenatsky | @jenatsky | Nov 5 7:46am

In reply to @meri8181 "I too am not taking any medication for my bone loss. I’m 74, active by doing..." + (show)

@meri8181 I sure hope you’re right but aren’t you playing Russian Roulette with your bones? If you’re wrong you may not be able to gain back what you lose. Good luck trying to fight nature.

paulinea | @paulinea | Nov 6 4:17pm

I had hyperparathyroid disease, caused osteoporosis. Had tumor removed from parathoid gland. Just had l2 spine fracture. Dexa scan showed bone loss much worse now -3.6 so why? Should not have got worse one tumor removed from parathoid. Is it inflammatory bowel disease or malabsorbtion since surgery on small bowel for intersusseption 5 years ago?

meri8181 | @meri8181 | Nov 6 7:02pm

In reply to @jenatsky "@meri8181 I sure hope you’re right but aren’t you playing Russian Roulette with your bones? If..." + (show)

I’ve read too many horrible results by taking some medications.
I will take them if and when I really need to.
I’m meeting with Dr. Lani Simpson to discuss.
Dexa Scan machines can be off by 5% I believe.
Thanks for your concern.

windyshores | @windyshores | Nov 7 6:00am

In reply to @meri8181 "I’ve read too many horrible results by taking some medications. I will take them if and..." + (show)

@meri8181 I took a masterclass with Lani Simpson in 2021 and she was about to go on meds. Tymlos I think, maybe followed by Evenity and Reclast.

DEXA's can be off by -.5 I have read, which is different from 5%. Let me know if you can cite the 5%!

You have read about "horrible results" from medications but I am here to tell you the horrible results from NOT taking medications. I was feeling fine but ended up with 7 spinal fractures. Excruciating pain, some of it permanent, and new disabilities that are life-altering.

windyshores | @windyshores | Nov 7 6:03am

In reply to @paulinea "I had hyperparathyroid disease, caused osteoporosis. Had tumor removed from parathoid gland. Just had l2 spine..." + (show)

@paulinea so sorry about your fractures! Have you been on or ever been on medications for osteoporosis? It seems the surgery would have prevented progression but not treated the osteoporosis you already had, so I assume docs put you on meds.

Malabsorption could certainly make things worse. One of my kids has celiac and that was a concern for sure. Maybe your doctor or a nutritionist can help you get the calcium Vitamin D3 and other nutrients that you need.

Hope you are feeling okay!

eddieeeddie2468 | @eddieeeddie2468 | Nov 7 9:25am

I would add sitting at a chair when using a computer. I know you talked about a chair but keep in mine computers

I would say that your internal doctor doesn't know much about your disease and your orthopedics doctor if he is anything like mine won't take the time to discuss bone health. I would like to recommend a good certified physical therapist who is familiar with osteoporosis and make sure they won't be training others while they work with you. This is because they need to watch you train so that you do it correctly.

If your doctor prescribes make sure that he/she does the necessary procedures. Also, make sure the doctors explains any alternatives and do your research.