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Psychologically adjusting to osteoporosis diagnosis

Mrs_Thistlebottom
0 Recommendations

I find myself moving more gingerly ever since receiving a diagnosis of osteoporosis several weeks ago (lumbar spine, T-score -2.5), even though I've never had a fracture. I had been active before--walking, Pilates, some yoga, cardio, step, etc. I've been working out with weights for the past two years and was used to doing deadlifts, weighted squats, and all sorts of abdominal crunches. Now the deadlifts and crunches are definitely out, since that will put too much stress on my spine. I'm really struggling with the psychological adjustment of all this, and am wondering how others moved through this stage. Prior to the Dx, I was fairly active and felt much younger than my years. Now I feel like a fragile old lady (I'm 56). How do I move past this? I know it's important to stay active, but I don't want to risk damaging my spine either. Any thoughts?

Explore topics in this discussion:

Exercise Surgery Scoliosis Arthritis Falls Fractures Fosamax Osteopenia Pain Spinal fusion Osteoporosis Stress

23 replies

juliemarie

Dear Mrs. Thistlebottom, me too, me too, me too.
Since both my mother and grandmother died from the effects of osteo I felt like it was a death sentence. I, too, started to move like a piece of delicate china.
When I received the definitive osteo diagnosis I headed straight to my computer to discover the 'cure' since I refuse to take bisphosphonates. There is no 'cure.' There are treatments and good living practices and people like those on this blog who share their successes and disappointments.
All in all, we are all probably healthier than we were before the diagnosis. A few adjustments might have to be made. If you are concerned about your excellent exercise schedule, you might search out a Physical Therapist who is knowledgeable about osteo. I have a Master Trainer who specializes in conditioning people with osteo and she is fabulous. I feel safe with her. Others have found PT's who know about the disease.
Keep moving, get on a bone-healthy diet and consider your choices for treatment. Some of us cannot tolerate Big Pharma, others can with some success. I have a conventional doctor and an alternative medical MD.
Just realize that it is better to know about your spine than to get a 'surprise' fracture that could incapacitate you for a long time.

Nice to have read your post.......juliemarie

Mrs_Thistlebottom

Thank you, Juliemarie, it's nice to know I'm not alone in this, but I'm sorry that others are going through the same thing. I, too, felt it was a death sentence, but the more I read and investigate, the better I feel. I'm so sorry about the loss of your mother and grandmother to osteo.

The ironic thing in my family history is that there is no osteo. on either side. My mom is nearly 91, had a bone scan recently, and her doc says she's fine. She was never given her T-scores, though, so I don't know what "fine" means. But she's never had a fracture and her posture is great. She even took a couple of spills on the ice in her 80s. She takes calcium supplements and eats a well-balanced diet, but she also drinks coffee (1 cup a day) and has chocolate regularly. She's never avoided refined sugar or flour, and has never formally exercised except for housework (which she did a LOT of while she was raising four children).

I guess that's what's frustrating about this. You can do all the supposedly right things and still end up with osteo. I was also divorced five years ago, so I can't tell my husband to make the bed or pick up heavy bags of water softener salt. :-)

Thank you for the recommendation for the PT. I'm definitely going to look into that. Right now I'm waiting for the results of lab reports to see if there's a secondary cause for the osteo., as was suggested by the doc who interpreted my bone scan.

In the meantime, I'm going to continue with my exercise schedule (minus the no-nos), but do more walking and perhaps get a weighted vest. Ironically, I had just bought a barbell for my 56th birthday (it's a fairly light one), then got the diagnosis a week later. I guess I can still use it for bicep curls and chest presses, though.

Thanks for writing.

Joan

SusanRae

Hey Mrs. Thistlebottom and Julie Marie ~

Don't let this get you down. Your life isn't over because of this diagnosis. My spine is -2.9 and I've had 6 low impact fractures (2 required surgery--1 plate and 9 screws total) but I'm not worried about breaking like a "fragile old lady." I'm working on my balance and strengthening my legs so I won't fall again. I am more aware and more careful now of how I move and how much I lift. For example, last night when I was blackberry picking, there were some berries that I would have had to twist and bend to get to, so I left them for the birds. I just bought some potting soil, and instead of buying the huge (and HEAVY) cubic foot bag, I bought a smaller bag. I try to walk about 10,000 steps (appx 5 miles) a day measured by a reliable pedometer. I'm trying to eat better, taking supplements and just started strontium and vitamin K, too. No more diet coke. More veggies. Et cetera.

I'm going to try to incorporate the exercises on the Kathy Kaehler bone healthy work out from a previous NOF discussion: http://www.inspire.com/groups/national-osteoporosis-foundation/discussion/k athy-kaehler-bone-healthy-work-out/

And Karenatheklineback gave me a good abdomen strengthening exerciase from the "Sit ups are a huge no no for low bone density" discussion: http://www.inspire.com/groups/national-osteoporosis-foundation/discussion/s it-ups-are-a-huge-no-no-for-low-bone-density/. Scroll down to her July 17 response.

The O.P. diagnosis didn't hit me like a ton of bricks because I already knew I had osteopenia. Plus I had already broken all those bones so I kinda knew something was amiss. I was bummed out, though, and went the fosamax route for a few months. I'm feeling inspired now, though, and hoping the strontium works for me.

I just turned 50 two weeks ago and I am doing my best not to turn into a "fragile old lady."

Take care everyone ~ Susan

Mrs_Thistlebottom

Thanks, Susan. I'm determined not to let this get me down. Being proactive, reading a lot, and talking to others helps a great deal.

I did a low-impact cardio and toning workout tonight, followed by Classical Stretch (the PBS series), and modified where necessary (no twisting and no bending from the waist). Instead of crunches, I did the toe-tapping modification that Kathy Kaehler recommended (I think it's sort of a reverse crunch, but doesn't put any pressure on the spine). I don't think it will be too difficult to continue as I have been with a variety of workouts, as long as I'm mindful of the way I move. But darn--I'm sure going to miss those deadlifts. ;-)

sharonusa

Mrs. T; There are some tests to take to see if your calcium regulators in your body are working. An endrocrinologist is a doctor you could see. For instance the thyroid is a regulator of calcium. I first found out accidently that I had food intollerances that silently (at first) robbed my body of balanced body functions. It took 30 years after the first symptom for them to get significant enough to see a significant differance by avoiding those foods. An allergist I went to just on a whim 13 yrs ago did the whole regime of slight needle pricks on the back, testing over a period of weeks and determined several culprits in my diet. However, at that time I was not even warned of the havoc going on within my body by continuing to eat all of the foods I wanted. So now that it has had significant damage and a -3.2 dexa reading in my lower back, I decided to go back to an allergist again in hopes to get the whole lecture about the dangers and anything else I could learn. So I went to my booklet of doctors covered and went to one listed as allergist and he was an ear/nose/throat doctor. He said he only checks for 6 normal offending foods with one visit(and one of my biggies wasnt even on his list) . So that was an absolutely wasted visit. So I'm finding again that we have to be our own advocate to make sure we get to the right person with the right answers. Good luck, this is an adventure for all of us with ourselves being our biggest advocate.
http://www.foodintol.com/health.asp

bonnytiz

Hi Mrs T.
I was exactly the same as you when I was first diagnosed last October. I am diabetic as well, and I can honestly say it was far worse that that, I dont know why! I was stressed for months, I have come o terms with it now though, I still am very careful and have to put thought into everyday tasks, which I never used to to do, you just take things for granted!
Im not taking any meds, not yet anyway, I've not broken anything as yet!!! Im concentrating on a healthy life style (which I must say I was doing anyway) Im cross with myself because I have never taken calcium and vit D, I just didnt think I would have the condition. Now I take that, and Vitamin K and magnesium, I havnt got any boron yet, I think I need that as well.
Also Im doing balance exercises and getting plenty of exercise with my dogs and pony.
Im finding standing on one leg very hard, I can only manage 1 minute on each leg, but hopefully that will improve. Its certainly very good for balance!!
I am sure you will come to term with it shortly. This site is very helpful.
All the best
Daphne

duzy

Hi Mrs_Thistlebottom, Juliemarie, Bonnytiz, Sharonusa, Susanrae

My family member died at age 50, I am physician myself, immigrant and have 2 kids to raise and just 41 premenopausal, I am feeling same, like death sentance, additionally divorcing, I just joined. I do not want to depressed anybody. I am very positive person, just in the low point in my life, domesti violance, if I will be on wheelchair, his abusive behavior would escalate left me with the only choice- no more waiting for change. I like downhill skiing and want to continue be as active as I can, I am desperate to stay disability/death free at least 20 years to see my kids grow, have single mother life in peace without more abuse, no more shame that one can find out about abuse I had to live with, could you share with me stories what helped you find motivation to not give up, when you were in the lowest point like me, just diagnosed, your effords not rvarded with good results but opposite, despite my always good attitude I started to avoid gym 3rd week, because of shame of getting divorced in immigrant community, thoughts my exercise did not prevent progression of the disease..on last dexa is was rapidly progressive, worse..
What helps me is believe in God and I pray a lot, priests and catholic counselor I go to for supportive divorce therapy after failure of marrital therapy help, I need contact with people like me, I do not know anybody like me with set of problems life made me face today, please try to share your inspiration, be my friends, in all thislong message :my inspiration is Bible, God, Sr. Ann Shields MP3 Bible studies online, despite I feel more and more isolated from real people, cannot share about my problems wit my patients , thank you Eva

Mrs_Thistlebottom

Dear Eva,

I am so sorry you are going through these challenges. All I can tell you is that I went through a horrible divorce five years ago (the marriage was also abusive), and I am much, much, much better off today as a result. I know it's difficult, but please try not to give in to those feelings of shame or embarrassment. Divorce can happen to anyone, and I do not think that God wants us to stay in abusive relationships.

I just found out that my vitamin D level is insufficient and have high hopes that the three-month megadose that my doctor prescribed will help turn things around. I have also made diet and lifestyle changes and am feeling much more hopeful than I did when I originally posted. Faith helps tremendously. So does talking with others and learning as much as possible about this disease.

Above all, don't be too hard on yourself for ending up with osteoporosis despite your best efforts. Sometimes a person can do all the right things (I thought I was!) and still end up with the disease. Have faith, keep reading, keep talking with others, and God will find a way to lead you out of this darkness.

God bless you,

Joan (a/k/a Mrs. Thistlebottom)

duzy

Hi Mrs. Thistlebotom
This is all so true, this is why I turn here, because I believe God works by using people, use you to help me with your kind words, me to help another person, and it goes on like domino effect, therefore it is so fascinating to be alive and be part of some big picture.
Myself I find new infomation on this support group, like that we maybe are protected from swine flu taking biphosphonates- that information from Hong Kong, that we all feel fear and need support and it does not matter what age, what job we do. My adjustment is zero, do not accept I must change and give up on risking falls, denial is first to feel after diagnosis I believe, denial and not accepting to point of putting yourself at risk for bad fracture, like knowing it may result in fracture, specially doing it and in figure of speech putting hand to the fire...

AussieLass

Hi Mrs T,
Read your story with interest. Heartened to see a positive note coming through. Like you, I was diagnosed very recently with osteoporosis. I see a few parallels. Both active women. Both have aged mums with exemplary standards of fitness. Both seeking reasons for diagnosis.
My doctor has said " it's hormonal and here are two medicines you can take. Research and choose." She didn't appear to believe in further investigation of causation.
My reading has led me to find lots of contributory possibilities. Both our lives, it seems, have been subject to emotional stress and trauma, for different reasons. Stress is a contributing factor I believe.

You've found a vitamin D deficiency. Maybe that's part of my problem. Magnesium deficiency can cause havoc too. Can you describe to me the lab tests your sensible practitioner suggested to have done? How is vitamin D tested for? I would imagine a blood test.
I have been thinking of going down the path of hair analysis to give an actual cellular analysis of mineral status rather than just blood. What's in the blood may not be what the cells are absorbing because of the way a deficiency or excess of one mineral can prevent the absorption of another. Minerals appear to work in interactive pairs or groups.The minerals can be there in the blood but excreted if the balance isn't there.
Also considering a mouth swab as an alternative to the hair analysis, using cells obtained this way.
Still reading furiously to locate answers and a sensible course of action. Meantime I am taking the strontium ranelate with its additive I don't like: aspartame. This is an alternative to biphosphonates. Also taking a Calcium Plus vitamin supplement.
You don't have strontium ranelate over there, incidentally. But you have strontium citrate off the shelf and strontium m.. something.
For inspiration, read Sara Mead. She is posting in the National Osteo group I think. I get the inspire group and this one mixed up. Have been reading long long hours.
Sara has brilliant results with no meds. Diet, lifestyle, exercise, vibration. Really worth a look.
Sorry I have gone on a bit too long with this. Hope you have patience to read.
Hope to hear from you. Best of luck.

Mrs_Thistlebottom

Hi, AussieLass,

Thanks for your interesting note. I had further bloodwork done with a specialist because the lab report for the Dexa scan indicated that there might be a possible secondary cause for the osteoporosis in my spine (-2.5). Right hip was normal (0.0), and left hip was -1.1. So my doctor checked thyroid function and a bunch of other things, and discovered that I'm deficient in vitamin D. I just started the megadose yesterday. Maybe it's just the placebo effect, but I'm already feeling better--less muscle pain, less arthritis pain, less fatigue, and a brighter disposition.

The test is called a 25-hydroxyvitamin D test, also known as a 25(OH)D test. You can read more about it at the website for the Vitamin D Council (www.vitamindcouncil.org).

I've been reading a lot, too, and gathering as much info as I can. I am adding boron, vitamin K, and lactoferrin to my list of supplements. Yes, we do have strontium citrate here, so I may add that as well. An interesting study was done in New Zealand regarding the properties of lactoferrin and how it may promote bone growth. Google for osteoporosis + lactoferrin for some interesting reading.

I've also ordered a weighted vest and may look into ordering a Juvent 1000. I'm stepping up my walking program and am trying to be more diligent about weight training three times a week. I was in shock for about two weeks after the diagnosis, but now I'm fighting this with all the strength and determination I can muster!

Thank you for writing. :-)

AussieLass

Hi Mrs T,
Sorry, it was SaraMeeds in the Inspire group I was referring to in my last post.
Going cross-eyed I think!

Mrs_Thistlebottom

Hi again AussieLass,

Is this the same Sara who is a physical therapist? I have read a lot of good info on her website.

Joan (a/k/a Mrs. T)

sdivas

Hello Aussielass, Inspire is the web host for The National Osteoporosis Foundation online discussion community. Sara Meeks is a physical therapist and in my opinion as well as many others, is considered the gold standard physical therapist working on behalf of people with osteopenia/osteoporosis. Sara is a community member that gives freely of her time with suggestions. You are at the right place! (smile). Sandi

AussieLass

Hi Mrs T,
Good to hear we share the determination!
Thank you for replying so soon! I read your Vitamin D link and will follow through with determining my own levels. Haven't heard of lactoferrin so will investigate too.
Understand the purpose of weighted vest but unsure of availability here. I like the idea of the vibration machine. Better than medication I would imagine (esp. biphosphonates). Have had pain in hips from strontium ranelate today and have been discussing strontium as a whole in other posting if you are interested.
Can you see the posting to me from sdivas? She tells me that Sara IS a physical therapist. I guess I can google for her website. Just great these opportunities to learn!
Enjoyed your letter. Let me know how it goes with your endeavours. Wish you well.

AussieLass

Hi Sandi,
Guess it shows that I'm new at all this. These last couple of days have been first time I have entered into online discussion situations, photo placing etc.(Only photo I could find, so excuse the fact I am not looking you in the eye!)
Whew! What a learning curve. Have gone into hyper- drive in researching! My way of coping. Diagnosed Friday August 14 and seems a lifetime ago.
Thank you for seeing my error/confusion with the posting situation and taking time to clarify it.
Clearly I am in the right place when people respond so generously!

sdivas

AussieLass, it takes some time to learn about the community, but the Search (above) can bring up past discussions. You may want to use search for all the NOF journals. If you Search my discussion post NOF A Click Away, there is a listing of all of the NOF journal posts. Sara Meeks website - www.sarameekspt.com, but you can also message Sara from the community. Search a post from Sara. Click on her name and you will be able to send her a private message. If you need additional help, please let me know or pgreene; another volunteer moderator. We'll be happy to help ... and welcome to the community. Sandi

Marlys

Hi
I was just diagnosed less than a week ago after my first bone DEXA scan. Hip is -2.3 and spine is -3.8. I am really freaked out as I have had no symptoms other than sore lower back after several hours daily of caring for my multiple indoor pets which requires a lot of bending over and lifting. The pain subsides after a night's sleep.
is my spine so bad that it can just give out at any time? I am investigatijg alternative treatments strontium citrate), however , will not take fosamax (or related drugs)
I had a spinal fusion for scoliosis when I was 16 yrs old and lack flexibility in my lowers spine; have no idea how to exercise that as I lack flexibility in that area only.
it is hard to believe that I have this as last week i was climbing up and down a steep rocky shore while fishing ; also rollerblade occasionally ( not anymore)
Now I am afraid to do my daily chores and am waiting for a bone to break .
Can bending over cause a break ; I thought my lower back disconfort was musculature in nature.
Maureen

sdivas

Hello Maureen, please NO bending over, NO twists. Use Search for Exercise, SaraMeeks, MotherGoose, Karena and others will also come up in the previous discussion posts on safe movement for osteoporosis. But please do not sit and wait for a bone to break. You may never have a fracture. Read SequoiaHealth's suggestions for nutrition and reducing stress. There is so much information on the community that it may overwhelm, but be patient with yourself. As you educate yourself about bone loss, you will be able to put an osteoporosis plan into action. Plus you have a good support, motivating and empowering group within the community. Sandi

bonnytiz

I havent heard of lactoferrin either,I will look it up, the thing is how many medications do we take. I am taking calcium/vit D, boron,magnesium, vitamin K, silica.Dont know whether to add the lactoferrin as well. If you have a look on the posts re vibration machines it says that the company have ceased training but someone else is going to start producing the machines in a few months. I am so disappointed, I really would like one, I dont want to take drugs, I cant find anything that doesnt have horrid side effects.
Sara knows alot about these machines and the posts are really interesting.

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