January 23, 2018

Osteoporosis


Here’s a free collection of resources about Osteoporosis.

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Osteoporosis Survey

We’re surveying people about their experiences with Osteoporosis. Here will be a collection of their responses.

*This information is not meant to replace medical advice, and the information gathered via surveys may or may not be correct. Hopefully it will be helpful to you!

*Response format = Answer (Name, Age)


**Click here to share your experience with Osteoporosis**


Osteoporosis Symptoms

What symptoms have you experienced?

  • Broken bones, sore hips and back at times. (Pam, 52 years old)
  • Lower back pain since 3rd shot. Headache, jaw dislocates since 2nd shot. (Michele, 56 years old)
  • None so far. (Tina, 59 years old)
  • Broken wrist, had to have surgery, and broken bone in foot. (Helen, 60 years old)
  • Severe back pain. (Marcy, 62 years old)
  • Fractures and pain. (Pamela, 63 years old)
  • None. (Ardel, 65 years old)
  • Fractures, loss of 4 inches in height. (Ellen, 65 years old)
  • Only dexa scores. (Mary, 65 years old)
  • None, found out I had it from a heel test, then DEXA. (Phyllis, 65 years old)
  • Upper back pain, 1 year of Fosamax and it left. (LoLonhi, 66 years old)
  • Many: A loss of height of 4 inches since 2000 and kyphosis. Also painful back spasms and costochondritis in chest. Dexa scores: worse is -4.1 in spine. Fractured my wrist last Aug. 2017 and had surgery….Orthopedic Surgeon recommended Dexa Scan (my first…had 2 other bone scans in 2000 and 2014). I was diagnosed with OP in 2000. (Rita, 68 years old)
  • None. (Helen, 79 years old)
  • None/small. (Naomi, 82 years old)

Osteoporosis Causes

Is there anything you believe contributed to or caused your Osteoporosis?

  • Unsure. (Pam, 52 years old)
  • Ehlers Danlos syndrome, small boned. (Michele, 56 years old)
  • Chemotherapy at 38, saplingo oopherectomy at 42. (Tina, 59 years old)
  • Lack of dairy foods. (Helen, 60 years old)
  • I did find out that a cousin has OP. Other than that, nothing. (Marcy, 62 years old)
  • Early ovarian failure. (Pamela, 63 years old)
  • Genetics. (Ardel, 65 years old)
  • Genetics, plus rare possibility of side effects from taking harsh fertility drugs in the later 70’s. (Ellen, 65 years old)
  • Not to my knowledge. (Mary, 65 years old)
  • Graves disease (hyperthyroidism), no other risk factors. (Phyllis, 65 years old)
  • 3 years of Amitriptilene. (LoLonhi, 66 years old)
  • Many risks and health issues: Small bones, my mother had OP, Fibromyalgia and lack of exercise due to painful joints and muscles, Chronic Myofacial Pain. My body’s inability to absorb calcium and other supplements (had Nissen Fundoplication surgery in 2009, which I think interferes with absorption). (Rita, 68 years old)
  • Early menopause 42 yrs old. (Helen, 79 years old)
  • Small boned, menopause. (Naomi, 82 years old)

Osteoporosis Facts

What are some interesting facts about Osteoporosis?

  • Still learning. (Pam, 52 years old)
  • It’s many times silent with no warning for many. (Tina, 59 years old)
  • Everything. I really knew nothing about it. (Marcy, 62 years old)
  • It’s not just seen in the elderly. Children and young adults can have Idiopathic Juvenile Osteoporosis, Pregnancy and Lactation-Induced Osteoporosis and Transient Migratory Osteoporosis. Diet, exercise, supplements and sometimes pharmaceuticals are necessary to treat it. You can do all the right things (diet/exercise/supplements) and still have bone loss. (Pamela, 63 years old)
  • You don’t know you have till something happens or you have a scan. (Phyllis, 65 years old)
  • When on drugs incidences of broken thigh bones and necrosis of the jaw. (LoLonhi, 66 years old)
  • There are MANY factors that contribute to OP and many inconsistencies about medical information from doctors, websites, etc….very frustrating. (Rita, 68 years old)

Osteoporosis Pain Management

What’s your experience with Osteoporosis-related pain and pain relief?

  • Magnesium topical spray. (Michele, 56 years old)
  • No pain as of yet. (Tina, 59 years old)
  • I get pain. I’m in pain, or take Panadol. (Helen, 60 years old)
  • Norcon and heat. Warm water pool helped also. (Marcy, 62 years old)
  • I’ve had 6 spinal fractures and many spinal surgeries so the pain varies. Topical Novocaine cream helps with the pain. Post surgery you generally need something stronger. (Pamela, 63 years old)
  • Physical therapy exercises and stretches relieve spine/thoracic compression syndrome pain much better than meds (OTC or otherwise). (Ellen, 65 years old)
  • Have not had pain. (Mary, 65 years old)
  • Haven’t had any. (Phyllis, 65 years old)
  • Had upper back pain took Fosamax for a year and the pain left not returning. (LoLonhi, 66 years old)
  • I have my own remedies for pain relief from a natural perspective: hot showers, pain relief cream, massage and essential oils and acetaminophen….NO BIOPHOSPONATES OR PROLIA…TOO MANY SIDE EFFECTS!! (Rita, 68 years old)
  • No pain yet – just diagnosed. (Helen, 79 years old)
  • Took Prolia 4 years, agonizing pain in hip, back, neck, shoulder. Stopped it 8 months later and have no pain! (Naomi, 82 years old)

Osteoporosis Difficulties

What are the hardest aspects of living with Osteoporosis?

  • Concerned about breaking bones when I get older. (Michele, 56 years old)
  • Knowing I shouldn’t do things even if my body is capable. My bones are what need protecting and I still feel young and healthy. Hate asking for help. Osteoporosis has taken away my independence. (Tina, 59 years old)
  • No stamina. Tiredness and hurting all the time. (Marcy, 62 years old)
  • Being careful with spinal movements to prevent fragility fractures. (Pamela, 63 years old)
  • Pain, breathing deep breaths, losing height. (Ellen, 65 years old)
  • Worry. (Mary, 65 years old)
  • Not knowing if or when a fall could cause problems. (Phyllis, 65 years old)
  • Staying active. (LoLonhi, 66 years old)
  • Since my wrist fracture, I have had to readjust my lifestyle (I also have visual issues, but can still drive). I am much more sensitive and guarded about my bone issues and health but am also exercising and eating much healthier than ever before!! The Dexa Scan results helped me to realize how fragile my bones really are…a good wakeup call!! (Rita, 68 years old)
  • Scares me! (Helen, 79 years old)
  • Fear of falling & breaking bones. (Naomi, 82 years old)

Osteoporosis Advice

What encouragement/advice can you give others who experience Osteoporosis?

  • Exercise and try to get calcium from the diet as much as possible and take VitD3. (Michele, 56 years old)
  • Know you’re not alone and adjustment takes time. Adapting daily living as well. (Tina, 59 years old)
  • To do weight-bearing exercises. (Helen, 60 years old)
  • Best advice has been signing up for support groups. (Marcy, 62 years old)
  • You can treat this, but I don’t believe it’s totally reversible so your most important end-point should be staying fracture-free. T-scores are not the barometer you should look at when trying to improve bone loss. (Pamela, 63 years old)
  • Keep moving. If you can still stretch and do yoga keep doing it. (Ardel, 65 years old)
  • See a physical therapist who knows what they are doing. (Ellen, 65 years old)
  • Keep moving. (Mary, 65 years old)
  • Do your research and do the treatment that feels right for you. Don’t let anyone pressure you into doing something you don’t feel comfortable with. (Phyllis, 65 years old)
  • Read up on it. A drug is not necessarily the answer! (LoLonhi, 66 years old)
  • I would encourage people with OP to try a healthier lifestyle first with supplements, exercise, and diet and to join a good OP support group. This group has given me so much information and support which is vital to my health and future. (Rita, 68 years old)
  • Research. (Helen, 79 years old)
  • Don’t believe your DR, use common sense, take vitamin D, k2, magnesium. (Naomic, 82 years old)

Osteoporosis Diet and Exercise

What’s been your experience with diet and exercise?

  • I’m inconsistent because of long work days. (Michele, 56 years old)
  • Daily yoga is my sanity and not being able to advance because of osteoporosis is frustrating and maddening. Adapting and sadly backing off manages to keep my balance and muscles toned and strong. Diet is always about healthy and we’re never too old to learn or change. (Tina, 59 years old)
  • So far, trying to get more calcium. (Marcy, 62 years old)
  • I’ve always had a good diet, exercised a lot and took supplements, but genetic factors can cause bone loss even with all these precautions. (Pamela, 63 years old)
  • Keep moving! (Ellen, 65 years old)
  • Can help. (Mary, 65 years old)
  • I take yoga and weight training classes, also walk and stay active. I eat a clean healthy diet for the most part. You can make positive changes that don’t involve the current drugs. (Phyllis, 65 years old)
  • I should eat smaller amounts of meat or become vegetarian. I have gout and that’s another reason to cut back on meat. I have Fibromyalgia and fatigue is an issue to keep moving. (LoLonhi, 66 years old)
  • I was never consistent and took it for granted in past years but am now on track. It is absolutely vital to my bone health and emotional health. (Rita, 68 years old)
  • Good – exercise 3-4 times a week. (Helen, 79 years old)
  • Do yoga. (Naomi, 82 years old)

Osteoporosis Treatments

What’s been your experience with treatments (medication, surgery, etc.)?

  • Dr wants me to do the Forteo shot. (Pam, 52 years old)
  • Started Prolia 1 year ago had my 3rd shot last week and I regret it. Worst mistake of my life.. my doc said she didn’t have any patients with side effects and I would only need to be on it for a couple of years. Last week the nurse informed me I can’t go off it because of the risk of vertebral fracture. I was duped. I have osteopenia with early osteoporosis on left hip and lower back at -2.6.
  • Meds are a mixed bag for their side effects. Bisphosphonates so far have been well tolerated. Time will tell regarding any future fractures. (Tina, 59 years old)
  • I hate the medicines I’ve been given for the process. As for the surgery, it takes longer to heal than normal. (Helen, 60 years old)
  • Fosamax and prescription Vitamin D, so far. (Marcy, 62 years old)
  • I’ve taken Actonel, Forteo, Evista, and ET without side effects. I’ve had 6 spinal fractures and 7 spinal surgeries so I do have on-going problems from this that will never go away; like pain and many physical limitations. (Pamela, 63 years old)
  • I cannot seem to keep the vitamin D high enough taking 2000 a day in the summer and four to six thousand a day in the winter. So I take the prescription once a week or 50000. I want my numbers up in the 60s. And they’ve been in the low 30s. (Ardel, 65 years old)
  • Forteo helped a bit, Fosamax, Boniva, etc just exacerbated GERD and make it worse. The first infusion of Reclast gave me 12% in bone improvement! (Ellen, 65 years old)
  • Took Fosamax for years, then a break and now restarting it. (Mary, 65 years old)
  • I took the natural approach, lots of exercise, supplements, healthy diet and strontium citrate. (Phyllis, 65 years old)
  • While on Fosamax I had a major problem with what felt like spasms of the esophagus. I stopped taking it against my Drs wishes. (LoLonhi, 66 years old)
  • My wrist surgery was a real eye-opener. My O Surgeon said my bones are really soft and I realized how serious this can be. My regular doctor did encourage exercise and diet but I wished he would have educated me more on OP and the seriousness of this medical issue. (Rita, 68 years old)

Osteoporosis Recommendations

Anything you’d recommend for someone with Osteoporosis?

  • Do your research. (Michele, 56 years old)
  • Don’t panic and just breathe. There’s so much info and support so don’t hesitate to reach out. Cry and get mad if you need to then accept the dx with grace and move on. (Tina, 59 years old)
  • Keep moving, walking, going to the gym, swimming. Do what you can. (Helen, 60 years old)
  • Lots of research. (Marcy, 62 years old)
  • Be sure to include a good diet, exercise, and supplements and if necessary pharmaceutical drug treatment. I feel the warnings about side effects are overblown. (Pamela, 63 years old)
  • Visit with a naturopath who also has osteoporosis to help you with a healthy protocol of micronutrients. (Ardel, 65 years old)
  • Pay attention and get educated. Know your DXA scores. If you are not given a copy of your scores for each area scanned, then you are going to the wrong doctor. Knowledge is power. (Ellen, 65 years old)
  • Educate yourself, chose your path and don’t let fear rule your life. (Phyllis, 65 years old)
  • Check out the website Save Our Bones. A whole different way of looking T it from a very educated woman that has/had osteoporosis. (LoLonhi, 66 years old)
  • When you are diagnosed with OP, research, study and join a support group. It is the best thing you can do and get a good doctor that can help you. (Rita, 68 years old)
  • Research. (Helen, 79 years old)

Osteoporosis Resources

What specific resources have you found most helpful?

  • Groups. (Pam, 52 years old)
  • I can’t say. I have looked online at many sites and read comments. Of course, you will read mostly negative comments because if you don’t have a problem you won’t be doing research. (Michele, 56 years old)
  • This support group and I really like Dr. Kate and her calcium paradox video. Dr. Lani Simpson too. I’m not picky and read everything I can. Common sense dictates what to follow and not go with wacky “cures”. (Tina, 59 years old)
  • Ask for help if you need it. (Helen, 60 years old)
  • Medical journal articles, staying up on the latest drug treatment and reading as much as you can about all aspects of this disorder. (Pamela, 63 years old)
  • Physical therapy. (Ellen, 65 years old)
  • My Doctor. (Mary, 65 years old)
  • The internet and support groups. (Phyllis, 65 years old)
  • Save Our Bones site. (LoLonhi, 66 years old)
  • My Osteoporosis Education and Support Group and the Orthopedic Surgeon that was really honest with me. (Rita, 68 years old)
  • Web. (Helen, 79 years old)

Osteoporosis Stories

Share an experience you’ve had related to living with Osteoporosis.

  • Pain in the left hip when walking. (Michele, 56 years old)
  • Been fortunate so far as I’ve been followed for many years because of my cancer history. Drs were expecting this dx so I’ve had fair warning. Just angry and trying to work on acceptance. Supporting others is a great healer. (Tina, 59 years old)
  • Having to use a walker. I walk half marathons and it’s embarrassing to use one. (Marcy, 62 years old)
  • Being unable to lift heavy objects due to spinal weakness and joint disorders. I also have nerve damage in the spine from the fractures which limits most things you can do. (Pamela, 63 years old)
  • I tripped on the National Mall in DC and fractured my sternum. (Ellen, 65 years old)
  • When first dx’ed I was scared, now I’m not. (Phyllis, 65 years old)
  • So far I can’t say that it has affected me. 1 and a half years ago I had a hard fall on my hip. Huge bruise the size of a softball with nothing broken! (LoLonhi, 66 years old)
  • Since joining my OP support group, I have had many questions about OP answered….what caused it, what are the risk factors, etc. The one question I have right now is why have I lost 4 inches since 2000 and what has caused it….compression fractures, degenerative disc disease, etc. I will be having a visit with my regular Dr. the end of this month. I would like to see if I can keep my Orthopedic Surgeon for consultation or ongoing issues with my bone health. (I hope so). He’s young, but an extremely good surgeon and very honest. (Rita, 68 years old)