Osteoporosis Community

I wish I could help you with answers, but I want you to know that I hear your pain and hope you find an answer soon to help you.
That's great that you have your alert mind and creative processes to help you through this. My friend who has fibromyalgia has gone through pain management classes, which has really helped her deal with her chronic really bad pain. She has learned many different processes during the six weeks of work in this class. Maybe there's something else out there to help you relieve this pain you're going through. Good luck!

Dear vlbWorrell,

I wanted to add my voice to Phototaker's in welcoming you and being sorry to hear about the turn your life has taken. I would encourage you to explore mobility options as well as talking with a Pain Management Center . This article addresses Assistive Devices for people with rheumatoid arthritis, but may help give you some ideas.

I'd also encourage you to reach out to your local or online artistic community. Soak up the creativity and find inspiration. A friend of mine was a beautiful watercolorist before a seizure caused her to crash into a mountside while driving. Although she has a number of health challenges, she didn't give up her art. Instead, it took a new path and she's now doing woodcut prints and loving it.

Finally, do consider seeing a therapist who specializes in helping people with life-changing health challenges.

Yours in health,

Byroney

phototaker, from your username it sounds like you are an artist as well. What kind of photos do you like to take? Do you show your work? Do you have a website where I might see what you do?
Thanks for your kind words and support. I'm sorry it took me so long to respond to your kind words. I am new to chatting and it took me awhile to "sort of" figure it out. Take care and bless you.

Hello
Thanks for responding to post. Something else has happened since my post.
The ortho Dr I saw that said I didn't need a new hip called yesterday and said that he had spent some more time reviewing my films and realized that I do indeed need a new hip. He said he was sorry and because I was getting around so well he initially did not see how bad my hip is.
We are in a medium sizes medical community. He said he would not recommend me having a revision here. He recommended that I have it done in a university setting. I am totally floored and do not know what that means or what my next step should be.

Dear vlbWorrell,

I am so glad to hear that your doctor took a second look at your hip films and has apologized to you. Hopefully this helps validate what you've been going through.

How about calling the doctor's office back and asking "What next?" They should be able to tell you what doctor or hospital to contact, and how to get things started on sorting things out with your insurance company (if you have one). Update us if you get a chance.

Best wishes,

Byroney

Hi vlbworrell...I'm so sorry to hear you need yet another hip replacement. Hopefully this will give you less pain and more mobility.

I've always loved photography, actually using my mom's Brownie camera at age 12. When I married, my ex-husband and I both had Nikons. He was a great photographer, and I'd watch him shoot. For years after my divorce, I would just use the throw away cameras. It hasn't been until lately, I took up photography again, and it's become my passion, other than my dancing. I belong to a camera club, and do a lot of my friend's get togethers, a wedding, and an engagement party.
I love going out with photography friends and shooting, and just took a ton of photos on my European cruise. I love doing flowers and just about anything else that has great shades of color. I did do crafts during the era of when I was first divorced, too, trying watercolors. I can't draw very well, so photography lends me to such creativity. I've also taken photos for festivals, on a volunteer basis. I have a Flickr site, but really like to remain more anonymous on WebMd. I'm also on the diabetes blog. Thank you for asking. I have shown my work locally, not in a smaller way, just starting lately.

I know we all go through times when we get down, depressed, upset because of pain, etc. I have worked through 2 frozen shoulders, lower back pain,(spondiolysesis), and arthritis in my neck. Exercise has been something that has helped me a lot lately. I can't do pilates and yoga anymore because of my pain, but I can dance west coast swing, ballroom, do zumba, walk, and swim, so I'm very thankful for that!

One of my friends loves riding horses, and actually had the horse fall backward, and almost rolled on her, too, so I can see how horrible this must have been for you. She still rides her horse, which has thrown her a few times, too.

I check into the bone website once or twice a week. I'll look for you. Take care!

Dear vlbWorrell:

First, let me say I am so very sorry you are experiencing chronic pain and grief as a result of what's happening with your body. Aging can be wonderful when you are 100% mentally and physically healthy but awfully difficult to manage when either of those arenas aren't functioning ideally. Nobody gives us much warning in advance, do they?

I have several responses to different parts of your post, but I want to start with a question: Who told you that there was nothing that could be done about your osteoporosis? One of NOF's mantras is that "It's NEVER too late to treat osteoporosis," and I believe that with deep conviction. So if a healthcare professional told you that, I would be concerned lest the healthcare professional might not be an osteoporosis expert. If this came from your primary care provider or orthopedist, I would urge you to see an osteoporosis expert. Some of the treatments build bone while reducing the risk of fractures. You need to make sure you're getting the correct message.

That said, it is virtually impossible to treat osteoporosis without prescription medication. You must get adequate calcium (1,200 mg daily) and vitamin D (800-1000 IU daily). Exercise is also important in preventing and treating bone disease, but I'm talking specifically about bone health exercises. See a physical therapist who focuses on bone health or purchase Boning Up on Osteoporosis . This is an excellent book about living with osteoporosis and includes safe exercises.

Consider medication. Calcium, vitamin D and exercise just aren't enough to battle osteoporosis. I'm not a physician and have no hidden agenda here. But I have seen thousands of women really improve using the medications available for this disease. Again, seek expert advice on this.

I understand as well as anyone the challenges of dealing with chronic pain. When I was 15, I broke my neck. By the time I was 30, I'd had multiple surgeries and everything else I could think of (acupuncture, physical therapy, etc.) to try to cure it. An insightful neurologist told me I needed to stop seeking a cure and instead try to learn how to manage the pain that wasn't going away. I went to another neurologist who specialized in chronic pain, and he changed my life. I still hurt daily, but have tools to manage the pain: biofeedback, exercise, getting sufficient sleep, eating well, meditation and others. I also take medication, but it is only a part of the treatment paradigm. I deeply believe that, if you reject medication out of hand for either the osteoporosis and/or chronic pain, you will find it difficult to see your quality of life improve. How you take the pain medication also makes a big difference. You must follow a schedule that never allows your body to be without medication (time dependent use rather than pain dependent use). It's much harder to reduce levels of pain than to keep them down. Counseling from pain experts can also be helpful.

You may have to change your lifestyle somewhat to accommodate the changes in your skeleton. You noted that you are an artist and want to take your work to shows. The part that you cannot do is to carry your own work. But you would be amazed at how helpful others are and how spending a little money for paid help can minimize the trauma on your body. Instead of saying, "I can't do this," you should think about ways in which you can modify the activity so that you CAN do it. You shouldn't go sky diving or bungee jumping, but you can likely find ways to participate in many of your usual activities.

The scientific literature on coping says that there are three ways you can view the problem with which you need to cope. You can see it as a threat. You can see it as a loss. Neither of those is a useful view. You can also see it as a challenge, and it is that perspective that will provide you with the best opportunity to continue to live your life with high quality.

Deborah, you gave such good advice about how to deal with chronic pain and looking at life in a different way.

I agree about having hiring someone or having a friend help her carry her art. I bought the "lightest" camera I could for my photography outings. When I went to Europe recently, I didn't take my bigger camera, but opted to buy a small Nikon Coolpix, which worked great. I stopped buying heavier purses, and wear a lighter sling across my chest purse. I changed my exercise routines. I don't wear heels, but flats almost all the time now, because of my lower back. I have tiny little heels for west coast swing dancing, which doesn't hurt my back at all.
When I come home from trips, I underpack my suitcase, pieces at a time and carry those upstairs. I learned that from a friend who had a back operation. It's good exercise going up and down the stairs anyhow. I don't wear heavy jewelry around my neck, because of the arthritis, but mostly scarves. I gave up golf lessons, because of the twisting motion. I gave up dancing which didn't feel good on my back, and do only moves that don't hurt me. In zumba class, I'm very careful not to do some of the quick moves with my neck. I slowly move it when stretching, instead of the quick moves that the teacher does. I actually have even talked to the teacher about a very twisty move she had with feet and she changed it, no longer doing that with the class. A friend of mine had hurt her foot doing this move.

When I was having physical therapy for my lower back(I couldn't even find one position to relieve the pain for over a month), the PT and her assistant couldn't believe my great attitude. She was telling others about all the problems I had with my body, and how well I was doing. I believe like you do, that you have to face the challenge and work through the pain, as I did with my 2 frozen shoulders. My doctor said that some people NEVER get better. I told him I wouldn't be one of them, and worked every single day for a long time getting back to "normal" and CONTINUE to do that now.

I'm no longer in pain, at least for now. It could happen tomorrow that I pull out my neck or lower back.I was told the frozen shoulders came from my neck problems and I could get them again. Some people NEVER get that relief and have to do pain management classes, etc. I can't even imagine how you've managed with a broken neck,(the pain) but I'm sure you're thankful it didn't affect your spinal cord. We all have things to be thankful for, right, Deborah? Thanks for sharing your story. I know it will motivate others. It did me.

Meanwhile, I'm continuing my swimming and dancing, and keeping myself as limber and out of pain as I can.

Deborah, I just read your biography. WOW! Now I know why you gave that great advice. You have done so much research and study all these years. I'm blown away! Thank you for volunteering your time on here.

I have oseopenia, with osteoporosis close in my hip area. I'm only 64 years old. Five years ago, I was advised by my doctor to take Fosamax. I read up on it, and fought his advice. I have a flap that doesn't close on my Esophagus that well, and I thought the medicine would come up. I didn't like reading about all the side effects, as medicines don't do well with me sometimes. I'm diabetic(doing it by diet and exercise alone)and take two heart medicines, as well as cholesterol and blood pressure meds. I just didn't want to do Fosamax as well.

It sounds like you are advising people to take medicine. I've never had a fracture, and do bone bearing exercise 6x a week, taking calcium and Vitamin D every day. I do have IBS, but from what I understand IBD is the disease that causes you not to absorb things for the bones. I'm past menopause, so hoping to stave off the osteoporosis. My scores did come down a little two years later on bone density test. I had to beg my doctor to give me a test two years later. I'm glad I did. I really feel in my gut and heart that the medicines that help osteoporosis will also make me more sick, and I just can't go through that. I'm feeling so good right now. Yes, I'm fearful that I will fracture, too. What are the guarantees either way? I'm waiting to hear more about Strontium. Someone I know is on Osteodents or something like that. I decided not to try that. I like to wait until something comes out that says things are safe for our bodies. Do you really feel I'm doing the wrong thing by not taking drugs like Fosamax?

Thank you for your support, I too am most grateful that my doctor took a second look and was willing to stand by his convictions. That isn't always easy with board of directors keeping Dr's on a short lease. The bottom line often makes things difficult for all of us including board of directors. Yes i'll keep you posted.

Thank you, I certainly am not looking forward to another hip replacement.........this one has lasted me 19 years and that is about 10 years longer than the ones the Universities I have talked, are aware of. I do need the surgery as there is a signifcant chance I could step wrong and break it. So bless my doctor for taking a second look.
Take care

Deborah, I am so sorry to hear you know first hand about chronic pain and agree totally with photaker about your great advice and excellent bio. Thank you for being there for all of us. through the foundation!

I'm afraid I said something to give the impression that I was told nothing could be done about osteporosis. I in fact have tried Actonel but my stomach couldn't tollerate it. We are going to try one of the yearly infusion bone desity drugs. Since it goes directly into the blood stream you don't have to swallow it or digest it.

I'll let you know how we do with it.

phototaker, I just read your reply to Deborah.
I in fact have tried Actonel but my stomach couldn't tollerate it.

We are going to try one of the yearly infusion bone desity drugs. Since it goes directly into the blood stream you don't have to swallow it or digest it.

Maybe that would work for you I am also 64 years young and had a bad DEXA Scan. When I couldn't tolerate the Actonel I oppted to control my osteoporosis with 1600 mg Calcium, 1000 IU Vitamin D and water exercise. That was four years ago.

I just had a new DEXA Scan and my BDM was worse.

Maybe the yearly inusion would work for you.

Vib...did you know that water exercise is not weight bearing, so doesn't help the bones?

That's why I started my zumba and other dancing, as well as walking. The swim is for flexibility and some strength(pushing against the water). The best strength building is with weights though.

Unfortunately, my gynecologist NEVER told me after my hysterectomy to take calcium and Vitamin D. I was inactive for many weeks recuperating from my operation. I "think" at that time I was on hormones, but was advised to go off of them years later, which I think started my bone loss. I also gained weight and did little exercise one year. Then, recently, when I thought I was doing so well with calcium, I realized I was supposed to take 4 tablets of calcium a day instead of two....my mistake for not reading the label correctly. Now I'm taking more calcium. I might have been taking enough in the foods I was eating though, so I'll never know.