I have been diagnosed with Osteoporosis 3 days ago. I just turned 30 and I am very afraid. I realize that I need to extremely change my life style and I guess I am not sure where to start. Does anyone know of any support groups, or activities in NYC for people my age in Manhattan?
Dear Tuni:
Part of the management of osteoporosis is movement and exercise. However, one needs to be careful as there are some things that you either should not do or should be instructed in by someone who is skilled in osteoporosis management.
If you send me an email I can send you a list of physical therapists and other professionals in NYC who have taken my trainings.
Best to start young!
Dear Tuni
I would not chnage your life at all. I am a dance instructor and was diagnosed 8 yrs ago. I do everything that I have always done. I am in severe stages too. I will not let them make me think I am a cripple. Talk to your Dr. There is no reason to go onliving as normally as you can. Some people think they are going to break at the slightest movement. In your case you need to find out why you developed it so young. There has to be a reason. If you find that our you may be able to reverse it. I jog, I life weights, and I still do dance excersise. Dont' let anyone tell you that you cannot live normally. It is just not true!
Tuni:
I agree with Toot in that you should endeavor to find out if you have a secondary reason why you might have developed the condition so young. You could have another condition that could be contributing to osteoporosis and could be treated. An endocrinologist would be a good specialist to see for that.
However, depending upon what activities you tend to do, I would NOT agree that you might be able to do all that you want to do without some degree of risk involved. Individual assessment of your condition will help you decide that.
Not to scare you, or anyone else for that matter, too much but up to 80% of spinal fractures associated with osteoporosis, are silent. What that means is that you could be living "normally" and doing what you love and want to do (and, believe me, I'm an advocate of that idea) and you could be sustaining silent fractures which will later develop into more, clinically-apparent fractures.
Knowledge is power! See if you have any secondary conditions which can be treated and find someone to help show you how to move better to avoid future problems.
I should say that a week ago I was diagnose with EPP Syndrome, because of that I have not been producing estrogen. Which probably is why I have Osteoporosis. My OBGYN said that he recommended something called, "food Medicine", birthcontrol and hormone replacement. Due to my age he suggested that I do not go on any Osteoporosis medication. I have an appt. with my Endocrinologist tomorrow regarding this.
thanks for all your help! It's nice to know I have some support!!
Tuni,
Remember one thing. If you believe you are crippled you will become crippled. I wish you the best of luck and I think it is great that your seeing and endocronologist. Sounds like your headed in the right direction. I can tell you that I had my ovaries removed at the age of 22. I also had half my thyroid removed. I am sure that I had osteo at a very young age. They just did not look for it back then like they do now. I honestly can tell you that I live a normal life, and am in better shape then most anyone else I know my age. In fact most people my age look like my mother. Keep a positive attitude , that is half the battle!
Tuni, I was diagnosed with severe osteo when 57 which means that I had osteo many yrs prior. I could have been your age but who is to know. I have kept on with my life in every aspect every since (now am 68) & have not fractured or lost heighth: 5 mi. daily; golf 3/4 times/wk; stretches weights daily.
Just remember that DEXA is but only a part of the Osteo diagnosis. Your bones may be very strong; also architecture is important. Look at family history. Wishing you a lot of luck & for all of us! bgillis
hi Sara. Could you please send me the list of therapists you say have worked with you, who live in NYC? My email is harmonica61@netzero.net. Thank you so much. Veronica
toot, do you take synthroid ..i had a radioactive isotope for an overactive thyroid 30 yrs ago which destroyed most of my throid and i know that the synthroid takes the calcium out of your bones?
A message particularly to bgillis:
Continuing to play golf with "severe osteoporosis" is taking a very big risk for eventual symptomatic injury. The golf swing involves flexion and rotation of the spine and the forces are additive; it is usually in one direction which means you are repeatedly putting stresses on the same areas--this could lead to a repetitive-use injury which, with osteoporosis, could be a compression fracture or you could develop other problems with these types of forces on your spine. Because we, as humans, tend to move in our areas of greatest flexibility, you are putting these repetitive stresses on the same area over and over.
You could already have impending compression fractures in the thoracic spine, even without body height loss, as up to 80% of compression injuries are asymptomatic. A Lateral Vertebral Assessment, which is a scan of the spine from about T6 to L5 would be the test to have to determine whether you have any compression there.
I have seen many people who continue to do what they want to do with no precautions etc. until the day something happens. Then they say, I wish I'd known or I wish I'd listened. One fracture can lead to many and life changes instantaneously when this happens.
I truly want people to do what they want to do but I also want them to be safe from the devastating injuries I've seen in my career. Disregarding precautions is a risk you may choose to take but I think one can live a full life with precautions. I do. I'm also 68 and have severe osteoporosis.
To Toot:
I tried to find your profile on this group but you are not listed, according to my search anyway.
I want you to know that I agree with you wholeheartedly regarding mental attitude--some say it is MORE than half the battle.
However, attitude needs to be tempered with knowledge and the risks one takes by avoiding the acceptance of the diagnosis. Becoming familiar with what would put one at risk for injury and then either avoiding that activity or learning how to do it better and more safely would go a long way towards continuing to live a long life free of the risk of fracture and its consequences.
There's always a balance and I would caution against just living one's life "normally" without taking into consideration the risks.
Sara,
You did not find my profile because I dropped off this site a week or so ago. I still read it and had to respond to your post. I will stay on for a short time. I found myself not interested in posting here anymore. I disagree with not living your life as you wish. I am 56. have severe Osteoporosis. (so they say) I am taking Actenol, but just started it. I have read so many negative things about these meds, that I will finish what I purchased and then stop. I think this disease is totally fabricated. Yes, many have broken bones. I personally have no signs of Osteoporosis. The pills make me sick and I seem to have more issues since I have been sitting here reading all this stuff. I am more active then most I know my age and look very young for my age. No one believes that I am a grandmother. I am small framed with a weight of about 98 pounds. I can still do splits and everything else. I believe the more you do the better. Not only is acting normal and excercising normally good for your body, but it is also good for your mental state. I realize that a lot of people on here suffer from broken bones. BUT from what I have learned in the past month is this.
1. They cannot truley tell what your bone density really is by these scans.
2. No one knows what your bone density was at the age of 20 or 30.
3. The side effects of these drugs are horrible on your whole system including kidneys and liver.
4. These drugs have not been on the market long enough for anyone to know the long term effects from them.
5. Fosomax has had several law suits and also they are finding that long term use of this drug can attribute to breaks. They only have the statistics on the Fosomax since it has been on the market the longest.
6. I know several people that are working with me to study side effects on these drugs. Several people I know stopped the medications against thier Dr.'s wishes and feel much better.
7. Everyone that has this disease if that is what it truely is, feels better by living their lives normally. No Dr. will tell me what I can or cannot do. I am probably more active then most of my fat Dr.s.
8. I see a lot of people on this site that think they know everything about this disease, when indeed they know only what their Dr's tell them.
9. Most people my age are overweight and will use anything they can think of to be sick. They love the attention and the attention of the Dr.'s. I choose to do my own thing.
10. I refuse to take drugs that will eventually cause bone cancer, breast cancer, not clinically proven, and also not on the market for very long. The cost of these drugs are making the Dr's and pharmacy companies rich. The rest take them and take a high risk of getting bone cancer, rotten jaws and more severe breaks.
I take my calcioum , my vit D. I have increased my intake of calcium foods and have been exercising harder then I have in 10 yrs. I feel better now then I have in 10 yrs. I twist with weights, I run with weights on ankles and holding in hands. I believe the exercise is making me stronger and probably doing more for me then any medication then. I wish you all well. I won't be posting anymore. I choose to spend my time in a more positive way..I pray that all of you that are taking these horrible drugs dont' get some horrible disease down the road. God BLess you all and keep you healthy and safe. Tootsie aka toot
Fortunately, we all have the free will to choose to live our lives the way we wish. I don't know if you have somehow confused my message with the thought of taking drugs. My message was on movement and learning how to move better and safer, not on taking drugs, which I would never recommend (primarily because that is not my field and which I also think is a person's choice.)
Adding weights to the joints when running and moving can damage the joints. One doesn't gain strength that way. I might suggest, although you don't seem open to suggestions, a safer way to increase a workout is a weighted vest, not putting weights on ankles and in hands. Twisting with weights??--I can only imagine what you are doing to your spine.
Anyway, I wish you well and hope that your choice to do things the way you want to do bodes well with you throughout you what I hope, for you, is a long lifetime.
Sara,
I am a trained dancer. We all trained with weights. Gymnasts are all trained to wear weights on ankles. If I did not do the training in the way that I do it, I would not be in the great shape that I am . Every Dr. I have ever seen cannot get over the shape I am in. I believe as a dancer and former teacher with gymnastics I have learned that weights make you much stronger. Weights make the bones wake up. I have never had an injury and I don't believe I am doing damage to my spine. Most people my age get out of breath walking a little way. Thanks for your concern. I hope you do well too! I believe in what I am doing. I believe that too many people today are dependant on drugs. The commercials today show pills for this and pills for that. They convince people they need these drugs. I read recently that these celebrities such as Sally Field advertising these drugs is a total joke. It is a shame that the government don't put a stop to this. I have seen people die because of taking pills that they did not need. I have also seen people being tested to death too. Why? money$$$$$$$$$$$$$ That is all they care about not us. I think each of us is different and that we have to do what we feel is best for us.
Sara,
I forgot one thing. I dont' accept the diagnosis because I still think that it is the condition of the bone that matters. Our muscles help our bones a lot. I do not believe in these Bone density scans. I also dont' believe in the routine colonoscopy's that they are running today. They are driving our insurance thru the roof. It is not the government that is the problem. It is the Dr's and the pharmacy companies that are ruining our system. I cannot go to the Dr without him wanting to run 70 tests. I throw all my papers away when I get home. I would be in for some test or some appointment every weeek if I listened to everything. I really dont' care to live my life like that.
hi sara
can you tell me if pilates a good excersize for osteoporosis?
Tuni:
I would prefer to continue conversations on this thread privately. Please contact me at sara@sarameekspt.com. Thanks. Hope you understand but it's getting a bit "testy" on this thread.
Why is it testy? Cause someone speaks the truth?
I would also like to express my appreciation to Sara and Lucy for sharing their expertise with all of us. I know I need all the help I can get and this community has given me that help. Thanks to all of you,
Betty
I have also been exercising heavily (jumping rope; Cardio kickboxing, jogging (without weights) weight lifting) BUT I may have caused a compression fracture or something else. I am not sure I will have to get a test. But I thought this could not happen to me because I am in good shape and only have osteopenia. Live and Learn. Does anyone know the most accurate test for determining a compression fracture or a disk compression in the lumbar spine. What can one do to correct it? Is kyphoplasty an option? I was distressed to learn from a post that my 10 years of taking Fossamax may have contributed to my getting this fracture if indeed that is what I have.
Living and learning
Gloucester
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