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Pregnancy-associated osteoporosis

cathyd
0 Recommendations

I was diagnosed with osteoporosis at the age of 37, two months after my first child was born. At that time I started having severe back pain. X-rays and MRIs showed multiple vertebral compression fractures and a subsequent DEXA showed that my bone density was extremely low (Z score at spine -4.7 and at hip -2.5). I was breastfeeding at the time and was eventually told by an endocrinologist ( 4 months later!) that nursing sucks the calcium out of your bones. I finally weaned my daughter at 7 months.

I'd like to have another child, but am terrified that I'll experience more fractures. I haven't gone on any medications because the endocrinologist says they don't know how long they remain in the body and what effect they would have on a fetus. My bone density has been increasing steadily post-weaning. My hip score is almost normal, but my spine score is still in the osteoporotic range.

Has anyone experienced this also? Did you go on to have more children? This condition seems to be extremely rare as it is hard to find information on it and many doctors, including my OB, are not familiar with it. Any information would be very much appreciated!

Cathy

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53 replies

mcgee334

Hello,

I need some help. I am 31 years old and 34 weeks pregnant. I was diagnosed a few weeks ago with transient osteoporosis of pregnancy and I feel a bit lost. Right now it is in both of my hips and I am getting another mri tomorrow to see if it has moved to me knees. At first they told me I needed to have a c-section because of fear of fracture but now they think I might be able to have a vaginal birth. I am scared and not sure which i should push. Does anyone have any advice and labor and delivery with this disease? They also told me that I cannot breastfeed and that they wanted to put me on osteo drugs, I cannot remember which one. After reading many of the posts on this site, I am afraid to take anything. No one has told me to take vit d or calcium supplements...should I be and how much? Currently I have been taking only prenatal and omaga 3. aaah, so much to think about. This is my first pregnancy and I feel like I am having everything stripped away from me. I am trying to stay positive but it is hard. Any help?

Iamstrong

Oh bless you girl. I've been there. It will get better. That's all I can tell you is look at that baby boy and hold him and remember each precious moment. In the worst moments I remember thinking horrible thoughts that I just wanted to get out of my body it hurt so bad but I would NEVER ever leave my baby alone without a mother. It was the worst and scariest time of my life but it was about 6 months of acute acute acute pain before it gradually started to improve. When you can, start walking slowly every day. It will improve your self-esteem again. Feel free to email me privately. This is obviously more common than we all thought but the doctors just don't know anything about it. My doctor prescribed me Diazepam for the spasms because it was safer than muscle relaxers for nursing. I probably wouldn't have survived without the percocet, valium and a tens unit on 24/7. If you don't havea TENS unit please get one. It will help a lot. I am sending you lots of positive energy. You'll get through this!
Iamstrong! Say it with me every day I AM STRONG

Iamstrong

Hi all,
Wow I had such horrible insomnia this morning for a reason. God has blessed me to find this group! Here is my quick version of my story. I started having back pain pops and clicks and spasms horribly about 4 months after my first and (so far only) daughter was born when I was 32. I was nursing at the time and sought help of my chirocpractor...guess what....yup cracked my back. The short version is the pain worsened until I went to an emergency clinic...they took an x-ray and told me nothing was wrong. Well it wasn't until about 5 months postpartum that the pain was so unbearable and progressing that I sought the help of a D.O. (She's still my doc now I'm 36) and the best. However, the first thing she tried to do was a spinal manipulation, give me a steroid pack and send me to physical therapy whereupon...yup, they put me on the table and cracked my back.

Well, after the agony was so intense I ended up on the floor one morning in spasms unable to move with my five month old infant crying on the bed, I finally got some Scans done (lower back). I found out that I had two compression fractures, L1 and L2 and that I had severe osteoporosis T score -3.7. Yada yada...later they did an upper back scan because I kept complaining of pain...ummm I was bedridden, couldn't sit up from lying down without help and had newborn. My doc referred me to a pain management specialist and this let's say (NOT SO NICE MAN) did nothing but put me in a horrible hideous brace that made me feel like a freak and couldn't sit or lie down for hours a day....AND told me that all I had was postpartum depression. Ahhh Karma dude. So, It turned out I had at least six more fractures. No one has been specific about the complete number of fractures but it is about 12. I have a height loss of nearly five inches. I have had nine levels of balloon kyphoplasty in L1,L2,T6,7,8,9,10, 11? I forget. This was two years after the fractures so I only re-gained about 3/4 of an inch total. It helped the pain stabilize a little but I am in pain every day nearly five years later.

I breastfed for an entire year against my doctors advice but I felt like it was the only thing "I" could do for my child that no one else could. I needed that bond with her so desperately and I clung to it with everything I had. I made sure that the prescription pain meds I was taking wouldn't hurt her and was careful about the timing of taking them. Looking back I don't know how I got through that difficult time but I hung on for that beautiful baby and my amazing husband.

Having found this site is such a blessing! I googled and researched for months when this happenend to me and I found only a site for young women with osteo and maybe one other person whom I could relate to and email. I felt SOOOOOO isolated, scared, alone, physically deformed. Terrified of falling, moving. I used to be such a different person.

I desperately want another child. After all of these years my husband finally agrees. He is scared and his fear of getting me pregnant has put a kybosh on our sex life in a lot of ways. We are in therapy now and it has helped tremendously. His fear is that this will happen again...progress or be even worse next time. My mother whom I am very close to is very unsupportive about having another baby. Everyone says...why can't you just be happy with what you have. Well, I am EXTREMELY blessed with my little prcious beautiful intelligent baby girl, but the people that say this have two or three kids. It's easy to say that when you aren't giving up the possibility of another human life. Of course I read some of your posts that the doctors think you are nuts well...mine rolls her eyes at me when I even talk about it. I am not stopping my life. I have a very positive attitude and this has all brought me to a very strong faith in the Lord. I know that somehow it will be ok. I just don't know why it's taking so darn long to get pregnant.

Anyway, this is an extremely long post and intro but I am just so happy that I am not alone...not happy that we are all going through this. Anyone else have surgeries, constant pain, fibromyalgia from this? I have chronic fatigue, migraines...all of this from stupid fractures.

Any comments, advice anything is welcomed by me. Please let me know how it went with a pregnancy post fractures. There was just nothing at all like this when I was so lost four years ago.

Blessings and I look forward to chatting with you and hearing more about your stories.

My Mantra: I AM STRONG!!!!!!!!

cathyd

Well, my endocrinologists said that if I wanted to have another child, I shouldn't take any osteo medication except possibly Forteo, but they weren't even sure about that. They told me to wait at least 2 years before trying to conceive again. I chose to go with no medication - just making sure I get enough calcium each day. I thought I would trust Mother Nature and I'm happy with that decision. It took 3 years, but my bone density has steadily increased and stabilized which the drs say means that it has gotten back to pre-pregnancy levels (although still osteoporotic). But now they say it's safer to try and have another child. I hope this helps.

Lee29

I'm glad that there is a community of support for osteroporosis related to pregnancy and lactation. I started experiencing hip pain at 38 weeks of pregnancy and it got much worse post partum to the point that I was unable to walk. I was then diagnosed with pregnancy related transient regional osteoporosis of the hip, a very rare condition, as others have mentioned. I am slowly getting better and taking 1200 calcium and 1800 of vitamin D as well as a homeopathic remedy for bone strength. My daughter is 2.5 months old and I am still breastfeeding which I'd like to continue for a little while longer if possible. I am getting better though although experience both hip, back and some knee pain. I've read that this condition completely goes away unlike typical osteoporosis. I try to walk now (was just given permission by orthopedist to walk as I wasn't mobile previously and in a lot of pain) and I swim when I can. I have only had MRIs and xrays though. I thought I would share my experience with others and see if anyone has any other advice for treatment. Thanks in advice. It's nice to have found this community.
Lee

wessam

hi cathy
I'm so glad to find this posting. my story is the same like yours, I'm 25 years old and i was diagnosis with osteoporosis after my first baby was born by 3months. he is almost 9 months now and I'm trying to wean him as i get worse and have to stop breastfeeding . my doctor recommended bonivea or actionel beside ca supplement and vitamin D but am afraid to take it because we plane to have anther child..i don't know what to do so i would like to know what u did and did u feel better with your choice . i really like to hear from u
wessam

LJHCANADA

I was just wondering if anyone out there was physically active like playing sports or dancing quite a bit and have been able to go back to doing those things after having this disease???

I loved playing sports and dancing and am really hoping that I can go back and do these things again although I know it will take a very long time.

Can anyone say they have done this since it seems I haven't found a story yet where someone is basically physically active like they were before.

Lauren

LindaS

I have a similiar story. I got osteoporosis during pregancy. I didn't have problems with my feet. I got stress fractures in my ankles, 2 compression fractures and detiorated hips. After the pregnancy I had a lot of stress fractures in my ribs, too. I guess everyone has different problem areas. I still get a lot of stress fractures in my legs. Although I have many problems now, 18 yrs later, my back seems to give me the least trouble.

LJHCANADA

I am so glad to have read everyones stories. It has really helped me with my own. I am now 23 but got pregnant when I was 21. My story is a little different then everyone else's though and I am trying to find anyone else who might be in a similar situation.

My osteoporosis pain started with both feet only about 1 month after I was pregnant. I thought I had a stress fracture (because I had had one before and knew the pain, plus I was working full time as a registered nurse) so I wore an aircast boot but the pain moved to the other foot as well and finally an x ray showed severe osteoporosis. I was 6 months prego at this time now. Meanwhile the whole pregnancy I was hobbling along looking ridiculous and in a lot of pain. Even got a wheel chair when walking for long periods of time. I had to wait until our baby was born for more test to be done. Bone scan and bone density did not show fractures but showed osteoporosis post delivery. Still no one could tell me what was causing my feet pain and reducing me to a wheel chair!!!!! Saw many specialists ect, ect, everyone else's story basically.

One month post delivery I developed severe backpain but everyone attributed it to my gait since at this point I had now been walking funny for about a year now. Steadily got worse. Had a horrible fall about this time where I needed help of two people to even move from the bed to a chair. My husband, son and myself had to move back in with my parents. Finally an MRI showed multiple stress fractures in both feet. Meanwhile back continued to get worse but I had gone to a physiotherapist and chiropracter for "muscle" back pain (which hind site probablly did more damage). Finally had an x Ray when my son was five months old showing multiple compression fractures in my spine and got diagnosed with pregnancy associated osteoporosis.

My son has been weaned now for almost 6 months but I am still having set backs although pain is a lot better. In December I suffered a sternal fracture leaning over the crib to put my son in, now causing my husband and I to move again back in with my parents for extra help.

Has anyone else continued to fracture even post weaning? I do have an awesome physiotherapist and I do wear the spinomed III but am still in pain. We also would like to have another baby in the couple of years. We are just praying and hoping every thing just eventually goes back to normal.

Has anyone else had feet issues with this disease or any insight?

Wendyday

I wanted to let you know what the Endocrinologist said about my results. My worst number was a -2.88. All my blood/ urine tests came back normal.

He told me that your bones don't stop growing till age 35! He said that my numbers can be so low because I have not hit my highest point age (35) and because I have not been taking calcium during pregnancy or nursing.

He recommended daily walking, 1500 mg calcium, and 4000 IU daily Vit D (that's a lot isn't it!) He told me to get another scan in a year, and that will tell us a lot. If it hasn't improved he wants to think about drugs. I pray that it will improve.

Overall, I feel really good about the visit. Glad to know that my bones are still growing and building. Oh, one other thing, he said that during pregnancy you should take an extra 500 mg of calcium a day and keep up the vit. D.

He said I would be fine getting pregnant again, your body really protects itself when you are pregnant. (nursing is another story though!) I was so happy to hear that!

YoungMum88

Well i feel for every woman out there who has suffered from this awful disease. I am 20 years old and am still on the road to recovery. I had a wonderful pregnancy but it all went downhill after birth. I had pain in my hips and back that continued to get worst until i started to collapse. This happened 3 times all with no prior warning, my back just gave way and left me crippled with excruciating pain worst than childbirth. I was taken to hospital by ambulance each time and it wasnt until the thrid time they discovered i had 6 fractures in my spine and osteoperosis. My spine score was -3.01 and hips -1.71.

I have spent the last 4 months in a wheel chair and on crutches and have to wear a full back brace. I also like everyone else ate well and took calcium during pregnancy. Im just so scared to have another child because i just couldnt go through this again. Im 20 years old and feel like a 90 year old. Its been so hard, i just take each day as it comes and i live on pain killers. I have a beautiful baby boy out of this but what it has done to me is terrible.

My husband and i really want more kids but no one can give me any information or advice on the risk of this happpening again. It has been the hardest 4 months of my life and i pray to god i never have to experience this pain and struggle again.

IrishEyesinHawaii

I am so happy to finally find this post. I am 36, and was diagnosed with full blown osteoporosis 6 years ago, osteopenia 2 years before that. I have a 16 year old daughter, and am considering having another baby. I live in Hawaii, and specialists are nonexistent here. I am trying to find out if it is safe for me to have a child this late in the game, and with my osteoporosis. Anyone have any insight?

tam512

Julie-
There are a lot of us on here with the same story as you... far too many actually! It's amazing to me that doctor's are so in the dark with this diagnosis, and most of us do much more damage to ourself while waiting to figure out what is going on.
I was diagnosed when my son was 6 months old, and my dexa was a -2.9 for my back and my hips were around a -2.0. I immediately stopped breastfeeding (immediately as in stopped cold turkey, which was insane), and saw 3 different endocrinologists.. the first of which had never heard of pregnancy-induced osteoporosis, the second had heard of it, and the third had actually treated a few patients with it. The first two recommended for me to immediately start taking forteo, and third said she would give me some time with just calcium and vitamin D supplements. So obviously I went with the third dr. (as she was more experienced with it anyhow) and after 6 months, my dexa went up to a -1.4! So that was great news. But this is only my experience, i don't want to say that it will work for everyone!
I am due for another scan this May, so I'm hoping it will be even higher. I still take lots of vitamin D and calcium daily, and am VERY careful about my activity. As for my pain, it is unfortunately still there. It gets a little bit better as the months go by, (and as my son gets older and he can do more on his own), but if I lift him a bunch one day, I am very sore by nighttime. But I think the pain is case by case... once you fracture your vertebrae, they will heal, but they will never go back to their original shape, so basically your back is configured a little differently, and depending on where the fractures are, and how bad they are, the pain can differ from person to person.
But from what I've heard, the pain WILL eventually go away- or atleast that's what i tell myself.
I know it's so hard, especially when your baby is young, and you feel so useless as you can't breastfeed, or even lift your baby. But hang in there.. i promise it gets better!

jpod

Stephanie,
Thank you so much for writing because reading some of these discussion group threads can be disheartening. I am still reeling from just finding out about the osteo and trying to learn all I can. I am choosing to pay for a second DEXA test next week just because I have read that the machines can differ and if osteo is based on those numbers, I want a second opinion. The doctor said if my insurance won't pay, it should only be about $170 or so. I think it is worth it. I think you gave some valuable information, for instance, that estrogen peaks after 4 months of breastfeeding. I really need support from others right now so your email was very welcomed. And I appreciate your explanation of how the worst score is used as your overall score. I have also read that we should be using Z-scores to really assess the osteo and also that osteo is not necessarily a perfect indicator of risk of fractures. One thing I hope is that my pain will eventually go away and I heard it might after I stop breastfeeding. I am almost done -- maybe a few more days -- and that has been hard because I was not emotionally or mentally ready. I wanted to do everything the best for my son and wanted to breastfeed him a year. I have always been healthy and active and apparently, I took my health for granted. Now, I can't believe that I may not be the Mom I wanted to be for my son. I felt like there must have been divine intervention for me to have my son and now my world is turned upside down. This NOF website has been great, although overwhelming too. I am so glad I found others who can relate and provide their insights. It is so hard to believe that I may have to live with pain the rest of my life -- but it seems like the fractures heal eventually? Please tell me they do!
Thank you again, Julie

waters

Cathy, Julie, Wendy etc - gosh, I have so much to say! I am so thrilled to 'meet' all of you. AMEN to the worst pain being at night trying to sleep and also roll over. The mornings were always the worst for me when my fractures were fresh in 2005. I had to have help with my first and am doing all that I can to not lift my second as much either until I'm stronger. I wanted to tell you that your lowest score (which is the highest negative number obviously) is what they use to qualify your status. BUT - I had a total score of -2.8 in my spine (though some of the L's were in the -3's) when I got pregnant with my second. My hip was only osteopenia at -1.5. I did very well and had a great pregnancy (despite the fact that my endo wanted me at -1.5 before getting pregnant again)! I didn't even have back pain despite the fact that I had suffered multiple fractures in 2005. I didn't feel pain again until after breastfeeding for 4+ months. That is when you are most exposed since your estrogen is so high during pregnancy and almost undectable while breastfeeding (estrogen protects against bone loss which is why most osteo cases are postmenopausal). Sorry if I'm stating what you guys already know, but I've been to SO many Dr's since 2005 and want to share my experiences. They were all baffled by my condition - it took forever to get a diagnosis. Then I went to the Mayo clinic where they did a bone biopsy and I spoke to the greatest dr's ever, and i feel a bit more informed. There were no secondary causes identified. I need to start physical therapy now so that I can have the best chance of increasing my bone mass now that I'm not breastfeeding. I'm not quite ready for meds though I will consider the PRE menopausal Forteo study at Columbia University in a year since the endo's say great things about Forteo and it does not stay in your body like all of the other drugs. Trying to work and write at the same time, but I look forward to continued exchanges with all of you. Stephanie

waters

Hi Kate - did you start Forteo? I am curious! I am 35 and was diagnosed w severe osteo 4 mos after nursing my first child in 2005 when I suffered multiple vertebral fractures. I just had my second, and have really just escaped more fractures by the skin of my teeth. Tons of back pain, but thank God no fractures. I stopped breastfeeding 2 weeks ago and am starting to feel much better (though I'm still sitting at -3.1 for now). Let me know if you've started Forteo.... you'd qualify for the study going on for Forteo in premenopausal women at Columbia Univ (maybe you are in it already?). Anyway - you get Forteo for free and you have an extremely bright team of well respected endocrinologist's monitoring you. they are looking for candidates. I will consider the study in a year after I've had a chance to recover naturally. Let me know!

Wendyday

I am 24 years old and have a 7 month old baby. I found out Monday that I have the bones of a 70 year old woman! What a shock. I have no fractures luckily, I got a dexascan because I could visibly see my bones thinning! After reading your posts I am weaning my baby ASAP. I will make an appointment to see a endrocrineologist. Any other advice would be great. It sounds like I am the youngest one here!

jpod

Cathy,
Thank you so much for writing back. I don't think my fractures have healed because they feel the same -- hurt at night mostly when I try to roll over and when I get up in the morning (maybe because spine uncompresses at night?), but fortunately they don't hurt when I lift. The bone scan shows a healing response though, so maybe they are healing a little. I have been very careful when I lift and fortunately my son (although in 95% percentile in weight) already can pull himself up on his feet so I help him do that in crib before I lift him. Because of my back, I don't carry the car seat any more either.
So, it sounds like if this is pregnancy assoc osteo you can get your bone density back? That is great. Except we were considering another child, and at my age, I can't wait, so maybe I won't be able to. I have my DEXA results, and they confuse me a little. It looks on my T scores they picked my highest score in my spine, -3.6 and said I had osteoporosis. My Z-scores in spine range from -2.4 to -3.5 but average about -2.8. I have osteopenia in one of my hips and the other one is less than -2.0.
This all very unreal for me because I have always been very healthy and pretty active. I don't think I have any of the risk factors except low weight (around 128).
I am hoping that I had normal bone density prior to pregnancy but I guess there is no way to tell?
Julie

cathyd

Julie,

Have your fractures healed yet? I found that I had to stop lifting my daughter completely until my fractures healed (which took about 12 weeks after I weaned her). It was very hard for me emotionally not to be able to care for her all by myself, but I finally realized that it was the only way my fractures were going to heal completely. My husband helped a lot and we also had to hire someone for those 12 weeks to help me during the day while my husband was at work. Once the fractures healed, I began lifting her again. Just be careful to keep your back straight and use your legs - get down on one or both knees. Also, it's very important to gather your son as close to your body as you can before you lift him. Lifting from an Exersaucer was impossible for me. There's just no way to get a baby close enough to your body to lift them safely. With the crib, I would have my daughter pull herself up holding on to the side and then I would get right up next to her and lift. I also found it impossible to carry her in her car seat because those things are so awkward. I just left it in the car and carried her in and out, holding her as close to me as I could when I put her in or took her out. I was able to lift her until she weighed about 28 pounds and then I had to stop. But by that time she was walking and could climb in and out the car so we adapted pretty well.

As for the endo, they'll probably ask you a lot of personal history questions and run blood and urine tests, trying to rule out any other cause of your osteoporosis. The two endos I saw did give credence to pregnancy associated osteoporosis; although in my case they said my z-scores were so low that pregnancy alone couldn't account for it. I must have had low bone density pre-pregnancy and pregnancy worsened it. Both endos told me that my bone density would return to pre-pregnancy levels, but it would take 2-3 years to do so.

I hope this helps. Good luck with your endo appt.

jpod

Hi,
I am very happy to have found this website but very worried because I was diagnosed with osteoporosis and am reeling from that. I am 41, with a 6 1/2 month old son, my first child. I had nagging back pain almost since his birth, then had a coughing fit at Thanksgiving that ended up causing me horrible pain. I was sent to a chiropractor, and I wonder if he caused more damage. Then, I had x-rays, MRI, bone density, and bone scan in the last few weeks. I have two fractures in T4 and T8 and osteoporosis. Fortunately the fractures are not very painful except if I twist and I can most things although I get scared lifting my son, who is now over 20 pounds. I asked my primary care doctor about pregnancy associated osteoporosis but she sort of waved it off . She is sending me to endocrinologist who I seem Monday. I would like any advice on how to approach the endo on Monday. It seems from my reading that bone density may return on its own after nursing (I am sadly giving up nursing to get my health back). But it seems that many doctors don't know or don't give credence to preg assoc osteo. Any advice? And any advice on lifting children? I don't want to stop completely but think maybe I should see if my bone density can come back first. My husband does most of the lifting now.
Thank you for any advice on endo and lifting, Thank you, Julie

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