Osteopenia

[Archives1]

I got diagnosed with it this week and I’m feeling pretty down about it. I don’t need that on top of Rapidly Degenerative Osteoarthritis throughout my body and Rapidly Degenerative Disc Disease. My grandma had osteoporosis and also the same bone conditions I have already, so I’m sure I’m heading to full blown osteoporosis also. I’m 46 and have already lost 8% bone mass which equates an 8% increased risk for fractures. I’m two inches shorter than I was 10 years ago. I don’t know if I will dare ski or snowboard again. I guess if I’m going to, it better be soon before my bones get even worse. Does anybody else on the forum have this? Anyone have any advice other than take calcium and vitamin D, which I’ve already been doing since age 23? I hope they’ll still let me get my knee replacements this winter, even with osteopenia. Maybe they’ll say no because there is too much increased chance for failure because the replacement will cause leg breaks in the femur/tibia/fibia.

I watched my grandmother wither away in the nursing home for the final 12 years of her life. Her bones were so brutal she couldn’t get up by herself and she was so big that she was a “three-person-assist” so she had to be in a nursing home; she couldn’t be cared for by a family member at home.

I will not go down the same road as her. She was completely miserable in the nursing homes. Living life like that isn’t worth it. She entered the nursing home at age 67 and never left. I will not go down that path. I will not spend 12 years in a nursing home. I will kill myself first. I have it all figured out already for when the time comes.

If my grandmother entered the hospital at age 67, and I’m 46 with her bone DNA, then I have 21 years left before I have to end my life. That’s very depressing. I’m soooooooo glad I was a bold adventurer, athlete, and world traveler during my 20s and 30s.

Osteopenia means more broken bones, more surgeries, more chronic pain. I’ve already had chronic pain in my back, neck, knees, and feet since 2009. Recently the pain is starting in my hips, hands, and shoulders. It happens so fast The pain is nearly unbearable now and it’s definitely going to get worse. I don’t know how much longer I can handle the pain. I will definitely keep trying for as long as I can.

Do you peeps remember how I got up to pee in the middle of the night a year ago and my foot just broke horizontally and vertically? Yeah, that was because of Osteopenia. That’s how easy bone breaks happen in my life now, and it’s going to get much worse. That stupid break and the ensuing corrective surgery rendered me nonweightbearing for five months. I could barely work. Then I had to wear a boot for another 2 to 3 months. My foot hurts like hell constantly; it hurts worse than before the corrective surgery. I don’t want to break other bones. I don’t need any more pain.

You’ve probably heard people say, “You’ll get used to the pain.“ Well, yes, I am used to being constantly in pain. But that doesn’t mean it still doesn’t hurt just as much as.

And yes, things could be worse, but they could sure be better, too. I’d give anything to have my 23 year old body back.

Osteoarthritis means that you’re walking around with thousands of shards of broken bones in your body that can’t be put back together. I’d much rather have a broken leg, which I’ve had, than have osteoarthritis in my knees.

I hate getting old but I especially hate getting old alone.

 

[Archives1]

You write well, Snow, and are able to express your point of view in a way that others can see themselves. Have you considered composing your posts here, (and any other writing you do)into a more formal memoir? You've lived an active life. Your body may be wearing out, but you still have an active mind. Thank you for being here.

 

[Archives1]

You write well, Snow, and are able to express your point of view in a way that others can see themselves. Have you considered composing your posts here, (and any other writing you do)into a more formal memoir? You've lived an active life. Your body may be wearing out, but you still have an active mind. Thank you for being here.

Amen; welcome to the NAFC @rabock. Please take a moment to introduce yourself. We welcome new visitors.

@snow: I'm unfamiliar with Osteopenia but I am familiar with Osteoporosis. Both are very cautious conditions where you have to make sure you are staying active, and not let the condition get you down.

I hope things improve for you mentally - as this is not a death sentence of sorts. Please don't think of it as one; you are not your grandmother - and like you said, you've lived a very healthy and active life.

Keep up the progress and don't think about time. While it is the most important thing in life - dwelling on the negatives is time you could be spending smiling and sharing your memories and giving others hope like you give to the @NAFC.

Blessings In Christ,
Honeeecombs

 

[Archives1]

@Honeeecombs You’re right, I do have to make the most of the time I have remaining.

 

[Archives1]

@Honeeecombs Hey, I bought one of those Lego guys that’s in your profile picture! But I bought blonde pigtails so it will be me!

 

[Archives1]

@rabock You know, it’s amazing: every English teacher I’ve ever had or later during my university years, screenwriting classes, told me I should be a writer rather than director or producer. Random people I meet all over my life tell me to write a memoir. When a lot of people are telling you something, you should consider listening, so I will Thank you for your compliment

 

[Archives1]

I was a high school English teacher

 

[Archives1]

@snow

I have osteoporosis, but I am a man. As a woman you are fortunate that most research is done for women; virtually nothing for men.

You need a good endocrinologist to run "bone marker" tests. I went to one, but since I am a man, she couldn't do anything but prescribe the same meds that I won't take.

Here is a group with lots of experts you can talk to:

https://www.inspire.com/groups/national-osteoporosis-foundation

You will find that we are all scared to death of this problem and its treatments. My doctor prescribed "Prolia". I said, "Let me research it first." I found that all the meds have very bad side effects that I am not willing to risk. So, I said, "No way to any of it!" Do your research about the various medications for OP.

I am taking vitamin-D3, calcium, vitamin-k2 (MK-4 and MK-7), and strontium citrate. (Lots of conversation about these on "Inspire".) There is lots of controversy about things like Melatonin and proton pump inhibitors (omeprazole and Pradaxa). Strontium citrate is heavier than calcium and will improve your bone density.

Also, be sure to get all the DEXA numbers for all the locations they did your bone scans. Then, get the FRAX score to find out how it affects your fracture risk. FRAX is the real predictor of fractures for your age and bone scores. Here is the link to the calculator:

https://www.sheffield.ac.uk/FRAX/tool.aspx?country=9

 

[Archives1]

That is some solid information @mezajarjarbinks. I did not know that men too could get osteoporosis - but you are right about it being focused in the medical community on women. I remember as a boy seeing the graph of the women who was used as an diagram from 50,60, and then 70s of the conditions progression.

Stay positive @snow. The community is here for you.

Blessings In Christ,
Honeeecombs

 

[Archives1]

I too have osteopenia. My endocrinologist treats the condition using
Zoledronic Acid Infusion (Reclast) - a yearly 30 minute infusion. I had the infusion in 2019 and 2020. My DEXA scores improved so much, that my next scan is in 2025 (last scan in 2022).

My GP wanted to treat me with Prolia, but insurance said diagnosing doctor has to determine treatment. My endocrinologist prefers using Zoledronic first which he said could be used up to 10 years before moving to Prolia.


I am glad to read that others are taking vitamin-k2 (MK-4 and MK-7). I use the following one.

https://www.amazon.com/gp/product/B087DZKHVW/ref=ppx_yo_dt_b_search_asin_title?ie=UTF8&psc=1

 

[Archives1]

@thudson1965: interesting.

That makes me wonder - if these conditions which could be in our genes or genetics would be more susceptible to "turning on" when certain conditions are active or symptomatic.

Makes me wonder if a medical specialist or agency could do a scientific study on those of us who experience bladder and bowel health conditions are more likely to have X,Y, and Z conditions.

Thanks for sharing.

Blessings In Christ,
Honeeecombs

 

[Archives1]

Oh, I forgot to mention that osteoporosis is defined as a DEXA T-score lower than -2.5. They usually take DEXA scans of multiple locations like the lower spine, one wrist, hip, and one femur neck. (That's the knob at the top of the thigh bone.)

My femur neck was the only location at -2.5. Everything else was better than that. So, one scan location might be osteopenia and others osteoporosis. Since I started taking strontium citrate and other supplements, my score has stabilized. And at age 76 a DEXA of -2.5 is about normal.

The reason I am not going to take any of the meds they prescribe is that I have had extensive dental work. In that case, there is a substantial risk of the meds causing necrosis of the jaw (that is, death of the jawbone). That would be horribly painful!

Another problem is that they each have protocols like a limited time to take the med followed by a different med. If you were to find that you can't tolerate one of them and can't continue the protocol it can cause almost instant fractures!

It's all quite complicated.

 

[Archives1]

Snow you are wise to use your time wisely.
I sat by to write my memories any many times and found it gets more difficult to view the events which at the time seemed like adventures in the light of a life affirmation.

Recently for a structure I signed up for a online project called storyworth which offers multiple questions you write on each week and at the end they create a hardbound book with photos you provide.

To my horror I found it like strikes to a hurt toe with a hammer because what has made me so interesting to others is takes of a survivor and I don't want those memories to be sensationalized for any one else. My current happiness and peace is too precious and has come to me late.

But you might want to check it.
They refunded m money immediately when in half a year I could not be write a joy regardless of the inocuous questions

 

[Archives1]

@MezaJarJarBinks Thank you so much for sharing your wisdom and experience with me. I’m not going on any osteo Rx meds yet except the vitamins calcium and D. Are osteo Rx medsthe “biologics”? Those have severe side effects and I’m not sure I will ever be willing to take one of those. I’ll look into the other vitamins that you suggested. I’ve already been taking calcium and D since I was 23 because I was first diagnosed with the same kind of knees as my grandma when I was 19, so I knew I was in trouble. I also began a lot of athletics and working out at the gym 2.5 hours a day. I kept that up for 20 years until my knees became dysfunctional (buckling and locking, sometimes falling). Imagine how bad my osteopenia would be if I hadn’t done all of those weight-bearing exercises for all those years, or all of the skiing, snowboarding, and backpacking, or taken calcium and D for 23 years already!!!

Currently, I can’t do much exercising at all, I can’t even bear the pain of swimming, until I get my knees fixed next year. I can barely walk around my condo right now. Even the small amount of knee-twisting required to shave my legs is too much pain and malfunction. I don’t want to fall in the shower.

I have an Rx at the orthopedic gym at the local orthopedic hospital for special exercise regimens with supervision by nurses and PhD PTs. Now I really better get going with that, at least for my upper body for now.

My PCP said I should get a DXA scan once a year from now on. She did the calculations and I’m currently at 8% increased fracture risk; I’m sure that can, and will, get much worse. I will do as you suggested to learn more about my markers. I have an upcoming appointment with an endocrinologist so I’ll bring this up now. I was going there for hormonal and weight issues but now that you’ve mentioned they can help with osteo, I’ll bring that up as well.

I’ll definitely check out the website you suggested.

How does melatonin figure into any of this osteo stuff? I’ve tried taking it for sleep but it doesn’t help me, which is one of the reasons why my brain neurologist thinks I have narcolepsy because melatonin will help almost everyone. I proved during my sleep study that melatonin has no effect on me.

I think a big part of all of my problems and disorders stems from having had insomnia my entire life. It’s not good for a person. Once in a while I think I get a combined total of seven hours, but it’s usually more like four hours. It doesn’t help that I am a night owl but I love belonging with society so I stick with early rising when I can. I hate that when I bring insomnia up to any doctor and tell them that Ambien is the only thing that helps, they just stare down at me like I’m a junkie. I’m not, I just want to be able to get sleep and be healthy! They say not getting enough sleep is like smoking a pack of cigarettes a day. Then they say that loneliness is like smoking two packs of cigarettes a day. So I’m currently smoking three packs of cigarettes a day even though I don’t smoke.

Oh well. All we can do is try our best, and I do. I’m a perfectionist so I’ve had to work really hard in therapy to be able to just let some things go sometimes so I can relax. If I missed calcium one day in my former life, I would’ve called myself all kinds of horrible names for making a mistake. But now I try to just let things like that flow over me.

 

[Archives1]

@thudson1965 Thank you for your advice. I’m relieved to know others on our forum also have this condition. None of my doctors - not even my knee surgeon nor spine doctors!!!! - ever talked to me about the possibility of having Osteopenia. Finally my dentist insisted on the DXA scan because my teeth are shrinking so much, four fell out, six chipped, and 16 are cracked, just in the past six months! I don’t even have periodontal disease and I take realllllllly good care of my teeth. I’m glad he made sure the scan got done. He wasn’t surprised at all by the results.

What does getting that Reclast injection feel like, and where does it go? I’m not afraid of needles or procedures, but if it hurts, that will suck.

I just bought the vitamin you sent me the link for; thank you very much.

 

[Archives1]

@MezaJarJarBinks Whoah, just read your second post - crazy, about the meds! Clearly I am having, and have had, tons of dental work, so I wouldn’t be able to take the job on one either. I wish I was getting this at an older age. It’s a lot to cope with it 46. But at least I’m not learning I’m not getting diagnosed at age 23.

They scanned my hips and lumbar spine. Perhaps that included the top of my femur. I haven’t read the actual report yet because it was done at an unusual hospital system; I just have the letter from my PCP. During college I worked transcribing radiology reports so I definitely understand them and I will track mine down.

 

[Archives1]

@Maymay941 Sorry to hear the website didn’t help you. I have many, many great memories that are trauma-free and adventurous so perhaps I’ll write them down. I also have plenty of memories including trauma, lol! I don’t and won’t have children and I’m single, so I don’t know who could possibly care about what I have to write, because I think my friends mostly already know about my adventures. Sometimes I think it could be worth recording things to give to the Smithsonian as they keep lots of stories from lots of people for history’s sake.

 

[Archives1]

@MezaJarJarBinks and @thudson1965 What led to your diagnosis? Do you get any gastrointestinal side effects from vitamin K2? I have to take Calcium in liquigel form and with food or I get a stomach ache. I read a website that says you have to let your dentist and surgeon know if you take K2 - any idea why? I’ve had kidney stones before so I sometimes worry about that I’ll get more of them from taking calcium. But I guess randomly breaking bones is more of a scary risk than a kidney stone.

 

[Archives1]

@snow Im sorry to hear about your latest problems, wishing you well from across the pond.

 

[Archives1]

Phslink glad you popped in!