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Anybody else feel like screaming from a mountain top?

litltopaz
  • By litltopaz
  • Posted September 29, 2008 at 1:03 am · 23 replies
  • Shared with the public
1 Recommendation

So I'm new to this whole thing but figured the best way to start might be with my first "about me" text since I'm hoping this will change as time progresses. This is "my shout out" to anyone out there going through the same thing or anyone who might offer some inspiration since I'm fresh out at the moment.

I'm a 26 year old new mom recently diagnosed with osteoporosis and multiple vertebrae fractures. As if trying to have a career, a family and a soul wasn't challenge enough!

I recently suffered through months of "back pain is normal during pregnancy" and "back pain is normal after a c-section", and excruciating physical therapy listening to "it's gotta hurt before it gets better" and other mistakes that made me unable to do even normal tasks like getting out of bed, going over a bump in a car without screaming, or lifting my baby out of her crib.

Finally someone finally took me seriously enough to take an Xray and since then I've had every test anyone can think of but still haven't gotten any answers from doctors who seem to have no sense of urgency or care for my quality of life. I've gone from one specialist to the next and seem to be learning more on google than anywhere else.

I've been able to live somewhat normally through use of a back brace I basically had to beg for and daily hour walks with the stroller (which sadly does little to counteract the sedentary reality of my deskjob).

I've pretty much lost all faith in the medical industry since I have to fight for attention and no one wants to suggest anything to help me heal until I've been better "diagnosed". I wish someone would find out what's wrong with me so I could get some hope for my future. My daughter is not getting any lighter and I was really hoping to have more children!

I've finally made the tearful choice to start weening my baby since I read about pregnancy/lactation induced osteoporosis online - been feeling a little misled and abandoned by all the pro-breastfeeding "propaganda" that still makes me feel so guilty for that choice (and to think I thought I was doing something to PREVENT osteoporosis!). It's taken me months to listen to everyone in my family who have urged me from day one do what's best for my health rather than my baby since in reality she needs a healthy mom more than she needs breast milk - guess I was either in denial or hoping I'd get some other alternative from my doctors.

For years I used to worry that I'd never be strong enough to "fix" my "bad posture" - now the list of things I worry I'll never be able to do again is immense. I feel guilty that it never occurred to me that something like this would ever happen to me - I used to think being healthy and exercising was something I could get to once life slowed down. I'm desperate to find some sort of hope that I can make my life "normal" again even if I made the time!

I can't say how excited I am to find a support group like this - this is the first time I thought anyone might truly understand how I feel. I honestly wish that no one else had to go through this same thing - but at least now I don't feel so alone.

I feel like warning every woman I meet that this kind of thing happens! I wish to god I could have had a bone density scan years ago to prevent me from progressing this far and causing this much damage! How could so many different doctors miss the signs? How could such a huge community exist online and I never even knew osteoporosis happened to people my age?!

Explore topics in this journal entry and replies:

Exercise Celiac disease Surgery Scoliosis Back pain Pregnancy Osteopenia Osteoporosis Acupuncture Arthritis Forteo Fractures Physical therapy Fosamax Breast feeding Pain Depression

23 replies

elsiemarie

Hello,
First of all, I'm so sorry to hear what you are going through. It really sounds awful. I certainly understand why you feel discouraged.
I'm 47 and have had this for years. Didn't know till after I fell on ice and broke a hip. I probably had it for a long, long time since my scores are so bad now.
There are people your age who deal with this disease. I'm sure they will respond to you. Please be sure your doctor does tests for secondary osteoporosis. Don't be scared...but sometimes other things cause this, i.e. parathyroid problems, celiac disease (an absorption problem, corrected with a gluten free diet) Just be sure to have a thorough exam.
I understand what it is like to have doctors give the run around and look at you like you're crazy when they find out it is osteoporosis.
I'm really so sorry for what you are going through and know this site will help you.
Enjoy that baby!
All the best,
Joanie

myboy226

I am so sorry you are having to go through this, especially at your age. Find a good orthopedic Dr. and ask him about khyoplasty. This procedure cements your vertabrae and should relieve your back pain. You have too much life ahead of you to live it in constant pain. I wish I could have it done. I only have one compressed vertabrae, but it is a ten year old healed fracture and they can't do it for old fracs. My back hurts a lot whenever I do anything physical, but
I will have to live with it I guess.
Good luck to you!

DianeMill

It sounds like you feel out of controle and going for walks is one way to be in controle. Another thing you can do is work on your diet. Eat your yogurt , milk and cheese 2 hours before eating whole wheat. The fiber binds to the calcium and reduces absorption. Put lemon on gently cooked spinich so your body is less acidic-believe it or not- you can get test strips at the health food store to test for this. Lemon in decaf green tea is also good. Tea drinkers have better bone mass, don't know why. Standing on one foot for 5-10 min increases bone mass in hip. These tips I have learned from this community. Use the law of attraction and meditate even 10 min/day. Joy and serenity helps to cure. follow up with endocrinology because your parathyroid can eat your bones if it is over-active. Ask for lots of help with the baby.

pgreene

Please don't feel guilty about breastfeeding your baby. I breast-fed both of my babies and had no idea I had osteoporosis. I think what saved my spine was that it was fused from T4 - L4 for scoliosis and I think the rod/fusion mass took the brunt of things and kept my vertebrae from fracturing. I am pretty sure I had pregnancy-induced osteoporosis as well as hereditary tendencies for it since my mom had severe osteoporosis and my daughter had "soft bones" when she had her scoliosis fusion a few years back. All other possible causes were ruled out.

I was diagnosed at the age of 33. My baby was 3 at the time. Fosamax had just come on the market and the endocrinologist started me on it even though it hadn't been tested for premenopausal women. My scores were -2.5 in the spine and hip. After 12 years on Fosamax my scores are now -1.2 in the hip. They no longer test my spine due to further fusion for something unrelated to osteoporosis, although the surgeon did comment that my bones were in good shape as he put several screws into my lumber spine and he put long screws into each pelvis.

I would recommend that you find an endocrinologist or rheumatologist that specializes in osteoporosis. You deserve it!

Peggy

windblown

Hi litltopaz: I'm so sorry to hear about your problems... How old are your frax's? If they aren't real old you may be able to get them fixed like myboy says. Below is the link for Kyphon International with a a tab where you can look up Dr's in your area that do this procedure. There is also vertebroplasty, which you can read about below.

I've had many spine problems and frax's so I know what your talking about when you mention the speed bumps, pot holes etc. When I'm in the car I literally have to lift myself off the sit everytime I go over a bump. My problems now are from degenerative changes in my spine from many surgeries, so try and get this fixed so it doesn't turn into more frax's or arthritis. Check out the post's on SpinoMed III brace and talk to Sara Meeks about it, it may be something that might help you. The link below should explain the differences between the two procedures. The type of Dr.'s that do this procedure *if* it's something you're interested in are Ortho's, Neuro's, and Radiologist. I may have left a few out, but you get the idea.

Don't beat yourself up about the breastfeeding, it doesn't sound like you have much choice, and I'm sure your children will be glad you made the decision you did.

Good luck and I'll gladly scream with you :)


http://www.mayoclinic.org/vertebroplasty/index.html


http://www.kyphon.com/us/home.aspx?siteid=1

nobonesaboutit

I'm ready to SCREAM!!!!
But beside of that, don't feel guilty about ending breastfeeding. I was an OB nurse for many years and any amount of breast feeding you did was good for your baby. I also am a breast feeding advocate. I believe your child wants a mom who can sit in the soccer field stands (or even walk to them) than a mom who chose to run herself down to make LeLeache League happy. Do what's best for you and your family, you have so much to live for and are so young. I wanted to breastfeed but was told not to because of the meds I was on. I have 2 lovely sons who I enjoy very much and because of Forteo, had a second chance on life. God knows if there will be problems down the line due to the Forteo, but so far, so good. So many people are so intolerant of hearing a woman can't breast feed. Your family supports you and loves you no matter what so what do you care what people say who don't know and love you or even understand your situation? Everyone is different and cannot all be put under one umbrella. Enjoy your life and that wonderful gift you have in your arms. God Bless you and your family.

annsmac

Just read your post and can truly sympathise......although I'm 59 with bone density problems, no doctor ever suggested a BD test until two years ago when I ended up in the red zone. I've been under the care of one doctor group for 10 years and they still to this day don't ask at my annual physical, "Have you had a bone density test this year?" Now that it's too late to do preventative care, they still don't get it. It wasn't my job to know medicine. It was theirs.

AlisaB

litltopaz-- Your story is SO similar to mine! The only differences I can see are that I was finally diagnosed with postpartum osteoporosis after the birth of my second child (my theory is that I've had it for at least three years, though, since the birth of my first child), and that I'm just a couple of years older than you are; I'm 28. But the number of specialists I've been to, the lack of anyone believing me when I tell them that something is wrong, the not being listened to, the "back pain is normal in pregnancy and when you're a new mom," all of it is the same. Most of my labs and diagnostic tests have come back normal, and having all of them checked has been my idea-- I have to nag and nag and nag to get anyone to check these things, and most doctors usually said no initially. It is so frustrating to have to be the one begging for diagnostic testing. Most of my doctors seem to think that I should be content taking narcotics for pain relief and being unable to work for the rest of my life. When I finally got someone to order an MRI of my back, it showed four compression fractures, and then a DEXA scan showed -4.3 T- and Z-scores in my spine, which indicates severe osteoporosis. Six months after my pain started, I still can't work and I still have pain every day, but no one seems to think it's necessary to find out why I have this pain.

Having a rare disease is a long frustrating road, and I wish you the best. There are some things you can do to make yourself feel better. Try talking to someone about your frustrations, like a psychologist or other counselor (I don't know about you, but some of my family and friends are getting pretty tired of hearing about my pain and sadness, so it's nice to talk to someone who's life isn't changed one way or another if I still need to complain about this). Walking is also good, so keep up with that. You also need high doses of Calcium and vitamin D; if your doctor hasn't already told you exactly what your doses of these should be, ask. My rheumatologist also prescribed Forteo, which is a daily injection that actually builds bone, rather than just stopping bone-breakdown. It's also better than other osteoporosis medications because it doesn't stay in your body and your bones for years after taking it, which is good if you want to have more children. There is also the option of vertebroplasty or kyphoplasty, but for me personally, this procedure did not help at all. I was treated very badly by the doctor and nurse who did my procedure, I had a severe adverse reaction to the sedative medication they gave me, and to top it all off the procedure basically didn't work. This is probably because my pain is mostly in my ribs, however. I have heard that it has been very helpful for other women, though, so talk to your doctor about the option.

Stopping breastfeeding is also important, and this was something that was also very important to me, and very difficult to give up. I stopped breastfeeding my daughter two months ago, when she was six months old, and I still cry when I think about it. I'm so sorry that you had to give up this important bonding experience with your daughter as well. But I do believe that giving it up is also a sacrifice that we have to make for our children. It's important that our children have healthy mothers who can actually be here for them. I know from experience that hearing that doesn't make it any better or easier to stop, but maybe some day this idea will make us both feel better.

Lastly, know that the little research that exists on postpartum osteoporosis shows that it usually happens in the first pregnancy, and that, if treated, it won't happen again with subsequent pregnancies. This is information I have had to seek out on my own, since most of my doctors have never even heard of this disease. But there is hope, and if you focus on getting better for now, you will be able to have more children. And next time you shouldn't have to go through all of this.

Thank you for sharing your story, and for listening to mine. I wish you the best luck in finding the medical care that you need, and in getting healthy for your own sake and the sake of your daughter.

--Alisa

Maggie_Sam

Hi Litltopaz,
I believe we all feel what you're feeling to a degree when we first find and communicate on this site. I was extremely shocked to find I had osteoporosis as I definitely did not fit the Osteoporosis Profile.

I didn't understand the doctors and their aloof attitudes either. I ended up switching doctors completely due to my physician's lack of concern and information.

I am currently taking Forteo and am feeling great. Sometimes I can even feel my bones growing more dense. There are other medications you can take, so continue to do your own research and hopefully you'll soon find a doctor who "listens and hears".

Continue checking in to this site as we have some quite wise and compassionate peers to talk to here.
MaggieSam

JilleWhite

I've been where you are in many ways. I was diagnosed with severe Osteoporosis at age 30, after my 3rd baby was born. She was 2 mo. when I was diagnosed. And I also had to give up breastfeeding. I was heartbroken. But, 16 years down the road, I am still here, and move more and better than I did at age 30. Just be hopeful BECAUSE you are young, new things will come out all the time. I hate that you are so young, like I was (& still am), but where there is a will, there is a way to fight this thing.. and YES, SHOUT IT FROM THE MOUNTAIN TOP that YOU ARE GONNA BE A SURVIVOR!!!!
AMEN!
Jill

litltopaz

I just wanted to thank you all from the deepest parts of my heart for your compassion, your wisdom, your stories, suggestions and advice. I am so touched by every comment I have recieved - that I hope I will be able to find the time to respond to each one individually because each one of you has given me either a different level of hope and wisdom from which to move forward or much welcome sympathy and camaraderie in the face of deep frustration. I truly appreciate the unique and personal nature of your replies. I will send you each a friend request and if accepted a personal message as soon as time permits to follow up on these different topics - otherwise I wouldn't know where to stop in this one discussion since so many differen issues, topics and questions have been brought up in one place.
In the mean time, I wanted you all to know that coming home each day to a new comment or two is an amazing feeling that brings me almost to happy tears when I realize how silly it was for me to try and go through this on my own. Thank you so much for taking the time to respond. Every comment has brought me greater hope, made me realize that my story is not unique and that I am not alone, and most of all, they have encouraged me to not lose my will to find answers, seek better medical care and do what it takes to heal. You guys are amazing!
I have my next endocrinologist appointment on the 11th - I'll write another journal to let you guys know how it goes! (I am about ready to go in with my fists flying I'm so upset he's made me wait so long! But I'll be good). I'd like to try and avoid khyoplasty if I can but it's good to know I have options if the pain doesn't get better - it's at least reassuring to know it has worked for some if not all of you. I'll definitely look into forteo to see if that is a good possibility for me - though I'm hoping I will be able to improve without medication as some have suggested. It is reassuring to know I'm not completely insane for being heartbroken about having to stop breastfeeding - but also good to have so many others agree that it is the right decision. It is sad to hear so many others have also been let down by the medical industry but also reassuring to know that others have been able to fight it successfully and take care of themselves. I'm very interested in continuing to come to this forum to learn more about your individual roads to recovery, lessons learned, hopes and frustrations, and tips for exercise and better nutrition. Thanks again and keep em coming :)

windblown

Hi again, I just wanted to say you take a really pretty picture!!! Wish I could be that photogenic :( Oh the ravages of age-not nice to your face.

windblown

Hi pgreene: I'm glad your screws/hardware have remained in your bone that's fantastic. I had the opposite affect, they just kept falling out. However, since my last spinal surgery where they put in rods and screws in the lumbar area, they are still holding. I don't know if the Forteo did that, but prior to Forteo we just couldn't get the hardware to stay in-oh and the damage that caused when it fell out. Your fusion/hardware is sure large, I hope it doesn't limit you too much. I have scoliosis as well, but not bad enough to warrant the type of surgery you had to have. Do you have any flexibility in your spine? I can't bend where I have the hardware, but my thoracic spine isn't affected. Now I just have all the cervical probs as well, but have NO plans on having surgery for it, but I am looking *just looking* into the spinal decompression tx. Have you heard any positive stories about that or any negative ones as well. The almost constant pain is really hard to live with.

Good luck...

P.S. I do remember you from Shelly's group, it just took a while to place your name in my mind.

pgreene

I don't know who Shelly is but I was in Leslie's group if that is the one you are thinking of.

The only flexibility of my spine is above T4. I am in fear, because I already have severe DDD in the cervical areas, that I will need further fusion to my neck some day. I can only "bend" by hinging from my hips which is the way we are supposed to bend with osteo so that is a benefit. I mostly squat or get down on my knees though because I don't have enough flexibility in my hamstrings yet to be able to reach the floor and I hate using the grabber. I'm only 45 so we'll have to see what the future holds for me.

Peggy

SunnyWLC

Hi Litltopaz! I wanted to comment on your sadness about having to wean your little sweetie. I nursed for 6 months and understand totally how much you wanted to continue. What an awful dilemma! You probably already know this, but I wanted to reiterate the wonderful benefits of early nursing. The most vital "milk" is colostrum which is the first substance produced by the breasts in the first few days. Your baby got the full benefit of your colostrum! That benefit cannot be minimized - it happened, no matter how long or short a time you continued to nurse!

At the risk of going on too long, I'm going to copy/paste some good info I found online this morning, and include the site. My goal is to help you feel better about the choices you made, both to nurse, and to wean. I am glad to hear this group is lifting your spirits! We've all been in your shoes - not your specific situation, but in the position of blind terror, anger and disbelief. In the meantime, enjoy that tiny one! My "baby" just turned 24! Here's the colostrum info:

"Your colostrum provides not only perfect nutrition tailored to the needs of your newborn, but also large amounts of living cells which will defend your baby against many harmful agents. The concentration of immune factors is much higher in colostrum than in mature milk.

Colostrum actually works as a natural and 100% safe vaccine. It contains large quantities of an antibody called secretory immunoglobulin A (IgA) which is a new substance to the newborn. Before your baby was born, he received the benefit of another antibody, called IgG, through your placenta. IgG worked through the baby's circulatory system, but IgA protects the baby in the places most likely to come under attack from germs, namely the mucous membranes in the throat, lungs, and intestines.

Colostrum has an especially important role to play in the baby's gastrointestinal tract. A newborn's intestines are very permeable. Colostrum seals the holes by "painting" the gastrointestinal tract with a barrier which mostly prevents foreign substances from penetrating and possibly sensitizing a baby to foods the mother has eaten.

Colostrum also contains high concentrations of leukocytes, protective white cells which can destroy disease-causing bacteria and viruses.

The colostrum gradually changes to mature milk during the first two weeks after birth. During this transition, the concentrations of the antibodies in your milk decrease, but your milk volume greatly increases. The disease-fighting properties of human milk do not disappear with the colostrum. In fact, as long as your baby receives your milk, he will receive immunological protection against many different viruses and bacteria.

http://www.llli.org/FAQ/colostrum.html"

stepho55

I'm so glad you found out early on. I am now 35, and was just diagnosed a year ago with osteopenia, near osteoporosis (T score -2.4). I've had back pain for years, since I was 17, but after the birth of my first son I started having severe back pain. I believe that was my first compression fracture of my spine, but it was never diagnosed. I had x-rays but no one saw anything "abnormal" on them, but in retrospect I don't feel they were looking for a compression fracture. Most wrote my pain off as depression, although I could barely stand up straight! Finally after months of pain, it got a little better, but I spent the next 10 years back and forth to doctors with the same complaint, all to no avail. Some thought I was depressed (duh, maybe I was) while I feel others thought I was drug seeking. So I would give up in between. I also continued on to have 2 more children, my youngest 3, all of whom I breastfed for more than 2 years, which at this point is probably what I feel contributed to the bone loss. I have had a kypholasty at T7, but it didn't help, but I also have fractures on T4, T5, and T6, so I don't know if fixing those would help or not.
My wonderful new doctor, who did my first bone density a year ago, wants me to start Forteo. I'm a little hesitant about it, as I don't know about long term side effects. I definitely didn't want to do Fosamax, as I am not 100% positive that I am finished having children, as crazy as that sounds. I'm on the fence as to whether I should start it, or go on taking my Bone Up and exercising and seeing what happens. I've read the skeleton rebuilds itself every 7 years, so it makes me somewhat hopeful.

Your story is so similar to mine, it just made me need to post. I'm so fortunate to have found this forum with other women in the same boat. It's easy to feel like you're the only one with this condition.

Take care!

Birdrocker

You are too young to being having all these fractures with just post-partum. That was my experience, it was first attributed to pregnancy but then I turned out to have something else. But it took an osteoporosis specialist to figure it out. Please be sure and get a work-up by a specialist who deals e-an endocrinologist or rheumatologist or university to look for other causes. You'll need a full evaluation to look for something else that may be causing it all along.
Hang in there and good luck, but look for a cause.

joannemsw

Wow. Litltopaz. I am so sorry for all your problems and pains. I am pleased for you that so many friends have offered suggestions and support for you. That is so great and especially needed and so wonderful to be able to do it so easily on line. Please know we all care. I am so thankful I found this site last night. It is wonderful and amazing to be able to communicate so easily. Hang in there girl. There is a light at the end of the tunnel. Joanne

happy15

Alisa, I too have extreme pain in my ribs but it is only after laying down for awhile. What is your pain like? Is it constant? You are the first person I have read about that has this pain.
Thanks!

Tom-WI

Hi Happy,

I was assuming this rib pain was shared by many of us. I just never asked. Thanks for bringing this up. My ribs hurt more as the day goes on or if I'm on my feet for awhile. It's worst in the left side. Unlike you, If I can lie down flat awhile and put my arms up over my head, it feels better. If I remember to do the shoulder blade pinching exercises for posture, it seems to delay the problem. I have lost 2-1/2" of height and my t-scores are -4.2 spine and -3.9 hip.

Tom

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