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RE: Osteoporosis associated with pregnancy

JD — Fri, 12 Aug 2011 14:38:38 GMT

Hello Darlotoni. Thank you for sharing your story on the forum. You really have had a tough time too.
It's interesting that you mention that you think that taking the Calcitonin helped during your last pregnancy, as I was told I didn't have a Calcium deficiency and that the Osteoporosis was caused by a lack of Oestrogen during my pregnancy. As I've mentioned before, I do think everyone should have their Vitamin D levels checked. I also hope you are getting some good medical support, as this is such a rare type of Osteoporosis, that so many doctors seem unaware of it. I did make up my bone density again over the years and I really think that regular exercise and a good balanced diet have helped me achieve this. As I'm now at menopause age, I'm on HRT, to make sure I don't lose any more bone. I did try bio-identical hormones for a while, but they didn't suit me, so I'm back on conventional HRT again.
Best wishes
JD

RE: Osteoporosis associated with pregnancy

darlotoni — Fri, 12 Aug 2011 09:54:26 GMT

I SUFFERED THIS CONDITION IN 2007 WITH MY FIRST PREGNANCY AGED 32YRS WITH TWINS (OSTEOPOROSIS OF THE RIGHT HIP) DIAGNOSED BY XRAY/MRI AFTER MY BOYS WHERE BORN WHICH THEY SAID WAS SEVERE. THE CONDITION WAS CRIPPLING STARTED OFF ON CRUTCHES AT 6 MONTHS PREGNANT/PHYSIO SAID IT WAS PELVIC GIRDAL PROBLEMS.(NORMAL FOR TWIN PREGNANCY DUE TO SIZE/WEIGHT GAIN) BY 7 MONTHS WAS IN A WHEELCHAIR LIVING/SLEEPING DOWNSTAIRS. UNABLE TO GET IN THE BATH/SHOWER HAD TO RESORT TO HUSBAND WASHING ME DOWN WITH HOSE PIPE IN BACK GARDEN ( I LAUGH NOW!!!) HAD CESERIAN SECTION AT 37 WEEKS 5 DAYS. STILL UNABLE TO WALK AND PHYSIO IN HOSPITAL NOT WORKING I ASKED FOR XRAY WHICH REVEALED THE PROBLEM. AT THE TIME WAS BREAST FEEDING (LOOSING MORE CALCIUM). THREE MONTHS LATER I WAS WALKING AGAIN WITH CRUTCHES BY 5 MONTHS UNAIDED. (FULL MOVEMENT OF HIP NEVER FULLY CAME BACK) MORE HAPPY I COULD WALK AND FINALLY PUSH MY PRAM

14 MONTHS LATER I FOUND OUT I WAS PREGNANT AGAIN PANICKING IF THIS WOULD RE-OCCUR LOOKING AFTER TWIN BOYS WHO HAD JUST TURNED ONE. DOCTORS COULDNT ANSWER THIS AS THERE IS LITTLE LITERATURE AROUND ON PREGNANCY RELATED OSTEOPOROSIS. I RESEARCHED THE INTERNET COULDNT FIND ANYTHING. I LOADED MYSELF WITH CALCITONIN THROUGHOUT THE PREGNANCY WHICH I BELIEVE HELPED. IN FEB 2009 (39 WK 6 DAYS)A BEAUTIFUL HEALTHY DAUGHTER BY CESERIAN ALTHOUGH GOT PAINFUL TOWARDS THE END MANAGED TO KEEP ON MY FEET AND WALK AROUND HOLDING MY BABY. BREASTFED FOR 2 MONTHS THEN STARTED WITH PAINS IN HIP/SPINE MY DECISION TO WEAN NOW JUST INCASE THIS WAS IT RETURNING.

TWIN SONS NOW 4 YEARS OLD, DAUGHTER 2YEARS

I STILL HAVE HIP/SPINE PAIN AND LIMITED MOVEMENT OF THE RIGHT HIP IN SOME DIRECTIONS WHICH CAN GET YOU DOWN BUT IM BLESSED WITH THREE BEAUTIFUL CHILDREN AND A FANTASTIC SUPPORTING HUSBAND.

FOR RESEARCH I HAVE NO FAMILY HISTORY OF OSTEOPOROSIS / SUFFERED BROKEN FIBULA AND TIBULA IN LEFT LEG WHEN I WAS 11YRS OLD.

I AM DUE TO HAVE XRAY OF THE HIP SHORTLY AND POSSIBLY A 2ND MRI WILL UPDATE WITH FINDINGS

I HOPE THIS HELPS OTHERS

RE: Osteoporosis associated with pregnancy

smlindas — Wed, 22 Jun 2011 17:50:34 GMT

Sorry, I didn't make reference to the vitamin D comment in my earlier message. How low is your vitamin D levels. Mine was measured at 9 when I was first diagnosed. It is now 18 apparently. (18 what, I don't know!) Does the Dr have any idea why your levels are so low? Did you ever go on the Depo injection? Are you incredibly pale (I am!) The other thing I was wondering is has it made a difference to your general immunity?

Oh! And one last question. Did the support group ever get set up?

Kind regards. Linda. x

RE: Osteoporosis associated with pregnancy

smlindas — Mon, 20 Jun 2011 20:43:36 GMT

Thank you for your reply. The other thing that I wonder is, every so often I still have the let down feeling that you get when you are just about to feed your baby, so I guess I should get that checked out too! I was also on the Depo injection, and have a distant memory of being put on HRT at 25! Hmmm! Think I need to have a conversation with my Rhuematologist!! x Linda.

RE: Osteoporosis associated with pregnancy

smlindas — Mon, 20 Jun 2011 20:32:04 GMT

I am new to this forum and I am replying to all of your posts as I have had a similar experience to yourselves. I had my beautiful little boy in 2005. Three weeks later, I started to experience awful back pain. I was unable to bend over to pick my baby up, and needed help on an day to day basis to help with looking after him. Working for the NHS, I was entitled to access to the fast track Physio service that they offer for clinical staff. I had a year of intensive Physio, which I sometimes came out of in tears! They promised me that it was "just" post pregnancy back pain and that it would be gone within the year! I guess I was lucky, as once I realised at the end of my maternity leave, I would be unable to return to my role, I was referred to the Occ Health team, and I saw a lovely nurse who (again) luckily had not only been a midwife, but also an Orthopaedic nurse, and recognised that it was definitley not PPBP, but more like Osteoporosis, and further tests concluded that she was right! (I also had 5 vertebral fractures! and a very poor bone density which has never recovered) I am now alot better pain wise,although I cannot lie flat on my back as it is very painful, but they feel the one of the possible reasons that I ended up with it is due to very low levels of vitamin D, and I have just been given an 8 week course of very high vitamin D tablets to take. I am now at the stage where I would love another baby. I hate the idea of my little boy being an only one!( Mad! I know!!) I have never been offered the AA drug, and I am not sure why. Any advice? Kind regards. x

RE: Osteoporosis associated with pregnancy

carolina — Mon, 20 Jun 2011 20:25:51 GMT

Hi, I have now had my appointment with Dr. Stevenson in London. I would really recommend (what JD originally recommended to me) that you meet this doctor at the Royal Brompton. He has measured my VItamin D which registers as insufficient. He has also looked at my bone turnover which apparently has an influence on subsequent pregnancies and the likelihood of this happening again smlindas.

Carolina

RE: Osteoporosis associated with pregnancy

smlindas — Mon, 20 Jun 2011 20:09:18 GMT

I am replying to your post as I have had a similar experience to yourself. I had my beautiful little boy in 2005. Three weeks later, I started to experience awful back pain. I was unable to bend over to pick my baby up, and needed help on an day to day basis to help with looking after him. Working for the NHS, I was entitled to access to the fast track Physio service that they offer for clinical staff. I had a year of intensive Physio, which I sometimes came out of in tears! They promised me that it was "just" post pregnancy back pain and that it would be gone within the year! I guess I was lucky, as once I realised at the end of my maternity leave, I would be unable to return to my role, I was referred to the Occ Health team, and I saw a lovely nurse who (again) luckily had not only been a midwife, but also an Orthopaedic nurse, and recognised that it was definitley not PPBP, but more like Osteoporosis, and further tests concluded that she was right! (I also had 5 vertebral fractures!) I am now alot better, but they feel the reason that I ended up with it is due to very low levels of vitamin D, and I have just been given an 8 week course of very high vitamin D tablets to take. I am now at the stage where I would love another baby. I hate the idea of my little boy being an only one! I have never been offered the Android acid, and I am not sure why. Can I ask, did you have pain throughout your pregnancies aswell? Kind regards. x

RE: Osteoporosis associated with pregnancy

carolina — Fri, 18 Feb 2011 21:05:25 GMT

I will say so as I'm due to see him next week. I think that Vitamin D is definitely linked - I also have suffered with bad eczema for years (although wonder how that could be a factor?).

Speak soon and I will let you know the outcome next week.

Carolinax

RE: Osteoporosis associated with pregnancy

alp — Fri, 18 Feb 2011 16:46:32 GMT

My consultant was very hesitant to put me on any medication, particularly long term as very little was licensed for pre-menopausal women - and my bone density did improve without anything (apart from sensible eating and exercise of course!)

Perhaps the next person to see Dr Stevenson needs to tell him he has a ready made research group all waiting to meet him!

RE: Osteoporosis associated with pregnancy

JD — Fri, 18 Feb 2011 13:09:38 GMT

Hi MLP
You should definitely be able to be referred to Dr. John Stevenson at the Royal Brompton Hospital, if you live out of London, as I was originally referred and I didn't live in London. I know that Carolina has also been referred to him and she lives out of London too.
The Biphosphonate issue is a difficult one, but I think most of the medical profession tend to treat women with Pregnancy associated Osteoporosis the same way that they treat women with age related Osteoporosis, as they don't understand enough about this condition.
It would be beneficial to learn some common factors from everyone on the forum, for instance the eczema issue, as I've suffered with that for years. I also get bad migraines occasionally - does anyone else?
I also think doctors should be looking more at Vitamin D deficiencies in women, as here in the UK we lack sunshine, especially in the winter and many women have low levels and don't even know it. I've only just recently found out that a cousin of mine on my Father's side, was born with Brittle Bone disease! Now I'm wondering if there could be a connection there.
JD

RE: Osteoporosis associated with pregnancy

MLP — Wed, 16 Feb 2011 22:15:32 GMT

Hi JD, thank you for your reply. I had no problems with my first pregnancy and had a very easy 2nd pregnancy too with no back trouble at all. It all occurred 2 weeks after giving birth to my second daughter. Thanks for your views on the Alendronic Acid, I've read your past posts and Im going to try to be referred to Prof Stevenson as Im sure a second opinion will be extremely valuable (can GP's refer to anyone or do you have to be living in the London area?). I found myself having to trust my current rheumatologist as he was the only person to acknowledge the fact that I had this condition but he is very much in favour of taking bisphoshonates. I really haven't felt like there was a choice at all but having researched the side effects of these drugs and through hearing the experiences of others, I now feel like maybe there is another option. Im sure I've never had my hormone levels checked either. I also have eczema and have never really been keen on red meat. I am also very allergic to eggs so diet interests me too as to whether there is a link between this and the osteoporosis. Thank goodness for this forum!

RE: Osteoporosis associated with pregnancy

JD — Tue, 15 Feb 2011 13:54:44 GMT

Hi MLP,
So pleased to hear that you have had your 3rd baby without fractures - that's such good news. Did you have any problems when you had your first baby, or did the fractures only occur when you had your 2nd baby?
I am concerned that you are thinking of taking alendronic acid again, as this is not necessary in young women who are still producing the hormones that build bone. I managed to build the bone back up again without any drugs. Biphosphonates are prescribed to women that have Osteoporosis in later life, but that's because they're not producing Oestrogen anymore. Please have a look at one of my previous posts - No: 2528 on page 3 of this forum, which warns of the side effects of these drugs. Plus they tend to make the bone look like it's rebuilding itself on DEXA scans, when in fact they are making them more brittle, as they prevent the Osteoblasts from forming new bone. I just think you should be aware of this before taking these drugs.
Best wishes
JD

RE: Osteoporosis associated with pregnancy

MLP — Mon, 14 Feb 2011 22:33:10 GMT

Hi All, so sorry to see and hear of you new mums who are going through this difficult time. It really brings it all back to me reading about your worried thoughts and guilty feelings. It really does get better so just take each day knowing that you are a day closer to leading a normal life again and thank goodness for family. I had multiple compression fractures after my second daughter was born, 4 yrs ago and I am now pleased to say that I had my 3rd baby daughter in Oct with no fractures, yippee! I never thought I'd be able to have any more children and I was terrified that I would never be back to 'normal' again but although I have slight back ache, I am able to lead a very active life and very few people know I have osteoporosis (actually only osteopenia now). I was advised to take alendronic acid and adcal d3 after my diagnosis and my bone density gradually improved. I stopped taking the bisphosphonate before trying to conceive and I have just started taking it again now i've stopped breastfeeding. I am worried about taking it long term though, does anyone else take this? I would love to meet up and discuss this condition further as Im sure between us, our experiences would really help others who have recently been diagnosed, or should I say misdiagnosed! :)

RE: Osteoporosis associated with pregnancy

kk — Sun, 06 Feb 2011 17:31:59 GMT

Hi Sally,
Regarding the bump on your back and the pain you feel when you lie on your back...
I still cannot lie on my back without the aid of a pillow so I sleep on my side (8 months after I fractured). I do believe that it will get better but it will take a long time. When you start exercising and strengthen you back muscles, you will feel much better. You must be patient and believe in your body's power to heal itself.

I have been trying to gather some common factors to see what may have triggered this illness in us. Are you small built, underweight, or follow a specific diet?
kk

RE: Osteoporosis associated with pregnancy

alp — Sat, 29 Jan 2011 08:07:25 GMT

Hi all,

Sally I wanted to agree with everything that JD has said - it is a very difficult time, I think because you have all these exciting plans about being a new family - and then this happens and everything changes - so it is very stressful, and as you say it can be difficult for you and your partner.

Just because you are not doing everything physically for your son doesn't make you any less of a mother , so do not feel guilty! (And make the most of not being able to change nappies!)

I lost over 3 inches in height too, again it is difficult to deal with, especially when you are young - I could have done without the one doctor who told me i was 'lucky I was tall to start with' ! - it does take time to accept - but you do get used to it.

I think as time goes on and you start feeling stronger you will feel happier in yourself too.

Have a good day everyone,

alp xx

RE: Osteoporosis associated with pregnancy

JD — Thu, 27 Jan 2011 22:55:24 GMT

Sally, believe me I know exactly how you are feeling right now as I remember being so scared at times and wondering how I would ever be able to cope, but you must also believe me when I say that you will recover and in time you will get stronger and stronger and you will be able to put all this behind you and get on with enjoying your life with your little boy. You are not alone, as you can see from the amount of young Mums that are writing on this forum. The fact that your fractures have stabilised is good news and I am pleased to hear that your Orthopaedist does not want to put you on Osteoporosis drugs. It sounds to me like you are getting good advice. Please don't lose hope and I promise you things will get better very soon and you can look forward to the future.
Best wishes
JD

RE: Osteoporosis associated with pregnancy

Sally82 — Thu, 27 Jan 2011 19:45:09 GMT

Hello everyone,

I went to the doctors last Tuesday and I’m a little bit more reassured . However reading about you all getting better after +/- 7 months after fractures is what really gives me strenght.

I first saw the orthopaedist and he told me that my fractures have stabilized. They didn’t collapse further. 3 of the vertebrae are seriously collapsed, 2 moderately. Also the curve my spine made is relatively limited, he thinks that I won’t have to much problems with my back in the future. I’m off all pain medication for +/- a month and a half now. The pain I now have is bearable and is muscles pain and lower back pain (probably from lieing down for 12 weeks). Also the bump on my back hurts when I lie on it, but that I can avoid off course. The orthopaedist said I could start revalidation. He told me it is important to walk daily for at least an hour, to build up new bone. I will also start exercising in the hospital with the physiotherapist , exercises for abs and back muscles, but no exercises that put strain on my spine. I have to were the brace further. It’s the orthopaedist opinion that I can build up further muscles strenght at later time but that further damage to the spine and more vertebrae fractures should be avoided at all cost. He doesn’t want to put me on any osteoporosis medicines because he is convinced that my bone density will recover. He wants to see me again in 3 months, then they will take a new X-ray off my back and hips and also a new dexa scan. During those 3 months I have to be careful not to fall and I also can’t lift any weight(I’m still not able to anyway). I’ve also lost about 3 inches in height.

Then I saw the rheumatologist. He also agrees that my bone density will return to normal measures but that it will take time. Maybe my bones won’t get as strong as before but that is something we will never know for sure. He also is against osteoporosis medicine at this time for me. I only have to take extra calcium (cacit1000) each day and extra vit D once a week. No smoking (I have never smoked in my life and won’t certainly start now), being moderate with sugar and salt, coffee and tee and alcohol. He also told me about the importance of exercising too.

The doctors are convinced that I will heal, but the scary feelings I have don’t disappear. Mentally this situation is very hard. I’m scared for the future, I’m sad that I can’t take care off my baby. The stress this al has on my relationship is also very difficult. And there’s the stress about having the right treatment from the doctors. I hope they are right and that I will recover this way.

My little boy is what keeps me going, but I also feel very guilty towards him. I’ve lost confidence in myself as a mother.
My mother always tells me to take one day at a time, she’s probably right. I can’t help thinking however why is all this happening…

Best wishes
Sally

RE: Osteoporosis associated with pregnancy

carolina — Wed, 26 Jan 2011 20:33:08 GMT

Hello

Yes via NOS is also good but I agree with you JD that there is probably many other people out there who have not been diagnosed and this should get into the popular press. Indeed, I am the same JD as I take very good care not to mention this to anyone pregnant so as not to scare them either.... Yes to the press office too. I will email you when I get a moment.

Best wishes

Lindsay

RE: Osteoporosis associated with pregnancy

Press Office — Wed, 26 Jan 2011 16:31:52 GMT

Hello. If anyone wants to tell their story, our press office can provide assisitance and advice.
To contact the press office, please contact Siobhan Hallmark or Rob Dawson on 01761 473280 between 9am and 5pm, Monday to Friday, or send us an email. media@nos.org.uk

RE: Osteoporosis associated with pregnancy

JD — Wed, 26 Jan 2011 13:55:09 GMT

Hello All,
In response to Alp's post - I think it would be of help to have some sort of Support Group and website, whether it be through NOS or independently. As you mention this is a rare illness in pregnancy and the last thing I would want to do is frighten expectant Mum's. In fact, I hardly ever mention what happened to me, to any of my pregnant friends, as I wouldn't want to worry them. If I do mention it, I make sure I stress that it is very rare.
However, I am noticing that a lot of women are writing on this forum now, and it worries me that there are many other young women out there that have this illness and are being mis-diagnosed in many cases or they're being treated the same way they treat women with 'age related Osteoporosis' , which is wrong.
It would be great if we could get some press in something like the Daily Mail's health pages which runs on Tuesdays.
Sally - My spine is a little bumpy in places too, which I think is caused by the crush fractures I had. I also lost 3 inches in height because of this!
Has anyone else lost any height?
Also you asked how long my recovery took. It was about a year after I had my son, that I started to feel much stronger and then I managed to build up bone each year, as I had yearly bone density scans then. I now have the scans every three years. I did NOT take any medication.
JD

RE: Osteoporosis associated with pregnancy

alp — Tue, 25 Jan 2011 22:35:39 GMT

Aren't we better working with NOS to publicise this - everyone on this forum has found useful information, I'm not sure what setting up our own website would do? I know in the past the PR department has arranged for articles in the press so maybe its time for another mention, as you say Carolina, in women's magazines would be good. Remember, we are a rarity, I agree with an awareness out there, and definitely for doctors too, but we don't want to panic everyone who is pregnant every time they have a twinge, its worrying enough being an expectant or new mum at times!

Sally I hope that your appointment with your doctor went well today, my back was very painful to lie on when I first fractured, I found it easier to sleep propped up with lots of pilows then - I still find it better to sleep on my side (my first fractures were 15 years ago so I have had time to get used to it all!) The bumps I'm afraid are probably from the change in shape in the vertebrae now they have squashed.

Sweet dreams everybody - remember while you are coping with teething and sleepless nights, I have the onset of teenager-ism in my household - deep joy!!

best wishes

Alp

RE: Osteoporosis associated with pregnancy

carolina — Mon, 24 Jan 2011 21:22:54 GMT

Please do JD. I am in London to see Dr Stevenson at the end of February - don't know where you are...... If we set up a website somehow for starters (or new someone who could do it... I will investigate my end - does anyone know a website designer!?), at least if we gathered everyone's stories together, that would be a start. I think that links to pregnancy websites might be an idea although you would not wish to frighten people. Maybe it would require more publicity with the medical profession at some point..... and probably getting in touch with women's magazines is also an avenue to be investigated.... so many possibilities. My friend is actually a doctor and I will ask him abou this too.

RE: Osteoporosis associated with pregnancy

Sally82 — Mon, 24 Jan 2011 17:17:44 GMT

Maybe a silly question... Are the vertebra-fractures you have visible? I have an ugly bump on my back, literally 3 vertebra that really stick out. It's also painfull to lie on my back because off this bump?

Sally

RE: Osteoporosis associated with pregnancy

Sally82 — Mon, 24 Jan 2011 16:59:37 GMT

Hello Carolina, Alp and all others,

Reading here on the forum reassures me. I really thought I was the only one with this peculiar disease. On belgian and dutch sites there is no information about this. On belgian osteoporosis sites they even told me it doesn't exist, and that I had it probably before I got pregnant.

The orthopaedist and endocrinologist and now also the rheumatologist however diagnosed me with this. Tomorrow I have to go see them again about further treatment. I hope I can start revalidation. I had to stay in bed for the last 3 months... Not really the best treatment apparently. Do you take any medication for this? I read about ipriflavones from soya. It's a nutricional supplement that helps to build up your bones. Does anyone know/takes this?

And how do you all cope with all the emotions you feel going through this difficult times. I cried a lot the last few days/months. I know it doesn't help, but the future is so uncertain.

The Support Group is a wonderfull idea. This is such a rare condition. I never heard about it until I had it. And I think all women going through this need all the support they can get.

JD it is indeed awfull that not all docters are awear that this exists. How long did it take you to recover from this?

Alp thank you for your message and the fact that you would even consider to visit me. Tears came to my eyes while reading that. I think that is so nice!!

I'm considering to also go to London to see dr. Stevenson when i'm a bit more mobile. I'm going to ask my docters if it is possible to contact him maybe. He treated women who have this already. For my belgian docters I'm the first, they only learned about it at university.

Carolina I've sent you an e-mail. I hope you received it and look forward to hear from you.

Greetings from Belgium and a big hug to all of you

Sally

RE: Osteoporosis associated with pregnancy

JD — Mon, 24 Jan 2011 11:41:58 GMT

Hi Carolina,
I think it would be a great idea to set up a support group, although I know that 'Osteoporosis associated with pregnancy' is quite rare, it does worry me that the medical profession is STILL not aware of this problem in women, which means that many of us have had to go through needless tests, for example - testing for bone cancer. When I was in hospital, doctors were scratching their heads, wondering what was wrong with me all those years ago and I find it so appalling that this is still going on today! I had numerous blood tests taken, a piece of bone taken from my hip to check for bone cancer, plus a duodenal biopsy, which was very unpleasant indeed. I also remember being made to feel like a freak with the 'weird' illness. Dr. Stevenson was the exception to the rule and I was so grateful for all his help and advice. Most doctors still look at me blankly, when I tell them I had 'Osteoporosis due to Pregnancy.
I would be very happy to become involved with a Support Group and it would be great if we could all meet up sometime. Carolina, do you mind if I send you an email, so that we can swap phone numbers to talk more on the subject?
Best wishes
JD

RE: Osteoporosis associated with pregnancy

alp — Sun, 23 Jan 2011 22:17:56 GMT

Hi Sally,

I too would like to reassure you that things will get better - but they do take time. After my fractures with first baby it was probably six to seven months post fracture that I was able to look after her by myself again. Treatments no doubt vary between countries - or even parts of countries as you will see from this forum! I was surprised that you were given a brace though, here I think the doctors think that your muscles might get weak in one. It is important to build your strength up so if you can go for a short walk - at least you can hold onto the pram!

And yes, you will get back to a near normal life again - as normal as life can be with children!

And to Carolina's suggestion that we all meet up - that would be great, it sounds like we should go and visit Sally in Belgium!

best wishes to all,

Alp xx

RE: Osteoporosis associated with pregnancy

carolina — Sun, 23 Jan 2011 20:09:23 GMT

I was just wondering how people would feel about meeting up to talk about this form of osteoporosis - do you think that this is something to form a support group about? we should publicise it don't you think?

RE: Osteoporosis associated with pregnancy

carolina — Sun, 23 Jan 2011 20:06:39 GMT

Sally, also my email is: lindsaycarolina@gmail.com - if you email me, we can exchange phone numbers and you could call me if you need to chat.

RE: Osteoporosis associated with pregnancy

carolina — Sun, 23 Jan 2011 20:01:36 GMT

Hello Sally

Read my entries and you will find I had exactly the same situation - with 6 fractures and they also thought I had cancer so I had every scan under the sun including the nuclear scan and I couldn't pick my son up for the first 6 months. I moved back home too and ended up splitting up with my partner unfortunately due to the stress of it all.

I want to reassure you, as everyone here will do, that you will get better. After 10 weeks in horizontal recovery after 3 weeks in hospital where I had a vertebraplasty (cement in the spine), I did slowly get to do some things for my baby. I don't know if you have had a vetebraplasty but I found that this worked wonders - before in hospital I could not walk and dreaded the physios coming to make me get out of bed, I was in agony too. After the vertebraplasty (in Exeter, Devon, I think they specialise in this procedure), I managed to start walking again. I have had a number of injections including calcetonin and pamidronate. Recently I refused to have the zoledronate that my consultant wanted to give me in December as I had been reading much on the subject of bisphosphonates (including "Save our Bones" - see previous posting). I think it is just a gradual recovery process Sally. My baby was one on Friday last week and I am up doing everything for him now - with a little help with the lifting as he is nearly 2 stone!

I think that pilates is good once you are without pain.... I would see a specialist.... don't know if you have them over there - maybe a trip to the UK. I have an appointment with Dr Stevenson in London who is a specialist and I think he takes private patients too - he is in London. When you are up and about and recovered, it might be worth seeing him (?).

People have been of great support here

Keep us updated on your progress, but take heart.

Carolina

RE: Osteoporosis associated with pregnancy

Sally82 — Sun, 23 Jan 2011 16:59:23 GMT

Hello everyone,

I'm so glad I found this forum. I am Sally, a 28 year old woman from Belgium. I'll try to write in my best English and appologize already for my mistakes...

In august I gave birth to my beautiful baby boy. I was glad to deliver as I suffered from back pain for the last 3 months of my pregnancy. My gynecologist told me that I had pelvic instability and that the pain would dissapear after birth. Well it didn't, it became worse each day. I breastfeeded and came to a point that I couldn't pick up my son anymore. I had to go back home to my mother. And there I collapsed one day in the shower from agonizing back pain, 3 months ago. I was brought to hospital and there they told my I had 5 vertebral fractures: D12, L1,L2,L3 and L5. The docters first tought I had cancer. It was a very stressfull time for me, my husband and family. After 3 weeks in the hospital they told me I had pregnancy associated osteoporosis. I got a brace and could go home but needed to stay in bed as much as possible. I also had a daily injection with miacalcic (calcetonine) and had to take extra calcium and vit D. This week I had to return to the docter for a new DEXA scan. I was so hopefull that my bonedensity would be better and that I could finnaly start revalidation so that I could take care for my son on my own in the neir future. But the dissapointment was great: a slight improvement on the spine from -2,9 to -2,7 but it worsened on my hips: from -1,9 to -2,4 --> osteopenia. What should I think about this?? I'm so sad about this. I just want to take care for my son, hug him and pick him up myself, but I can't do this. I'm lucky that I can stay with my mother, I don't know what I had to do otherwise... I have to go back to the docters next tuesday. I hope I can start revalidation. How long did it take before you all recovered? My son is 5 months old now, and I'm so sad about everything I've missed so far... How much longer is this terrible time going to last?

Did you all recovered? What medication did you take? Did your bonedensity returned to normal? Did you're live returned to normal?

Greetings to all of you,

Sally

RE: Osteoporosis associated with pregnancy

carolina — Sat, 22 Jan 2011 20:58:47 GMT

Hi sorry I haven't been in touch for while - my little boy's first christmas and yesterday his first birthday too!! My appointment with Dr Stevenson was cancelled in December and has been rebooked for February so I have yet to see him.

With regards to vegetarianism, my consultant thought that this was a factor although I was never vegetarian during pregnancy, I was vegetarian and nearly vegan in my early 20s for a couple of years. I have a medium frame very slight shoulders and I have just weighed myself - I am the lightest I've been for 10 years. I spent 5 years in Hong Kong coming back in 2000 and I think my diet out there was not that good - I lost a lot of weight and was about 9.5 stone - small for my frame and age etc. I'm not sure if this is a factor especially as the case studies I saw suggested that there was a hormone secreted by the placenta during pregnancy which would make this more hormonal than diet orientated. Despite this, I will be sorting out my diet so that it follows somewhat on the advice of the "save our bones" book.

I really do hope everyone is well and getting better.

x

RE: Osteoporosis associated with pregnancy

kk — Wed, 29 Dec 2010 16:06:33 GMT

Hello all,
Just wanted to wish you all a very Merry Christmas and a speedy recovery in the New Year!

I want to return to searching common factors in our cases. Although I am not a vegetarian, I ate very little meat during this pregnancy and some friends of mine insist that this could have been one of the major causes for my osteo. Just wondering if any of you were almost vegetarian during your pregnancy and if this could indeed have been a factor...

Thanks!
kk

RE: Osteoporosis associated with pregnancy

JD — Mon, 13 Dec 2010 15:27:08 GMT

Hi all,
Sorry I haven't been on the forum for a while.
Just wanted to add my thoughts about the breastfeeding issue, although I'm no expert, but I have been giving this a lot of thought.
As breastfeeding stops your monthly periods returning, surely that means that you are not producing Oestrogen either. When women reach the menopause and their periods cease, they stop producing Oestrogen, which is why so many women get Osteoporosis after the menopause. Therefore it must be better to get your monthly cycle going again as soon as possible, so that the hormones start to kick in, which will then help to build your bones back up again. This is just an observation of mine and you should ask your doctors for advice about this, Of course, I know how important it is for bonding with your baby and also much better for your baby too, but I did manage to breastfeed my baby son for 3 months and was devastated when I had to stop. From the posts I've read on this forum, it sounds like many of you have managed for much longer.
Carolina - have you managed to see Dr. Stevenson yet?
Wishing you all a very happy Christmas
JD x

RE: Osteoporosis associated with pregnancy

kk — Wed, 17 Nov 2010 21:59:23 GMT

Hi Katherine and all,

I too delivered this year in April and got spinal fractures 2 months later. And I am still breastfeeding (7 months now); like you Katherine, I felt it was the only thing that would keep me bonded with my son as everyone else was doing all the carrying and changing, etc... I wish I knew for sure what effect breastfeeding has on the recovery process because I really don't want to stop, but I will soon just to play it safe.

My pain has subsided quite a bit but I still feel discomfort and I am quite stiff. I have started to carry my son a little bit but it is not comfortable ... I will restart my Pilates soon now that my fractures have healed. Ironically, I am a certified Pilates instructor! I am curious whether your back hurt when you sneezed or laughed hard and for how long... Mine still does.

For those of you who are very worried, don't be. This is an unusual syndrome and unfortunately there is no known cause or explanation yet as to what causes it. But we do know that this is not the standard osteoporosis so given that bones are constantly rebuilding themselves, we should be able to regain a good amount of our bone density in time after the bad effect of pregnancy has faded. We have proof (JD and others) that this is possible, and we just need to be positive and eat as healthy as we can.

Thank you all for your input!

RE: Osteoporosis associated with pregnancy

Mixed up Mama — Sat, 13 Nov 2010 13:35:16 GMT

Hi JD - thanks for pointing us all in the right direction - each forum I use is different in that with some it's frowned upon to "stalk" people by reading through their previous posts etc - it is great that you can help and advise the newbies! :)

Kind regards xx

RE: Osteoporosis associated with pregnancy

JD — Sat, 06 Nov 2010 12:48:17 GMT

Hi Katherine, In answer to your question about my bones recovering. Don't want to repeat myself too much, so you should check out my previous posts: particularly post numbers 2755 and 2770 and also my very first post no: 1906. I think these explain that I did gradually make up my bone each year and I've certainly led a completely normal life, to the point where I've been able to put the Osteoporosis to the back of my mind - even some of my best friends don't even know about it. I've been trying my best to explain to everyone on this forum, that you can AND WILL recover from this. Of course I was in a lot of pain and discomfort for several months after my pregnancy, but within a year, I felt I was well over the worse and since then I can honestly say I have lead a life that has not been affected by the Osteoporosis. When my baby son was a year old, I even managed to pass my driving test. I have not had any pain or discomfort at all and I am a very active person, sometimes I'm on my feet all day. I certainly don't feel 55 - I feel about 35 and many say I look like I'm in my early forties!! My only concern now, is to make sure that I don't lose anymore bone density, now that I've reached the menopause and that's why I'm now taking HRT.
JD xx

RE: Osteoporosis associated with pregnancy

Mixed up Mama — Fri, 05 Nov 2010 17:08:36 GMT

Your fractures were very high up Katherine - I have minor fractures to T7&T8 so my arms were affected along with the wedge fractures to T10 & 12 and L1 so my lower back and hips have been bad too - I really understand what you mean when you say that your arms gave way - that's what happened to me - my son had to find my mobile phone and bring it to me so I could call for help as I was unable to move with baby stuck on the changing table - bless him my son has been so good helping me!

My first birth was back to back - ouch! That hurts! :(

RE: Osteoporosis associated with pregnancy

Katherine — Fri, 05 Nov 2010 14:39:23 GMT

Hi all,

The only other notable thing about my birth was that I had to have a blood transfusion, but I think the bone loss probably doesn't have much to do with the birth and more to do with the pregnancy. Also, my little boy was back to back so all my labour pain was felt in my back and not in my stomach.

Ouch, hearing your bones fracture must be horrific. I didn't hear mine but clearly felt them go and remember thinking at the time that something awful had just happened although I know they must have been starting to break before that, as I had noted a few weeks before, that as I put my little boy back in the moses basket that my arms would give way and I would have to drop him the last inch. (I broke T2, T6, T8 and T10) so it affected my lifting.

JD, I noted that you developed the condition 28 years ago. Has the bone carried on recovering year on year? Does the condition still affect your life? I am finding it hard to know what to expect in the future as the doctors don't seem to have any answers. My latest bone scan has shown that the bone density has started to improve but in your experience does this condition clear up?

Katherine

RE: Osteoporosis associated with pregnancy

Mixed up Mama — Thu, 04 Nov 2010 18:27:56 GMT

Hi JD - funny how you should mention a quick birth my daughter (2nd birth) was very quick - 2 hours :w00t: I wonder if that could be a factor? My midwife said quick births were as traumatic as slow drawn out ones (first labour was 56 hours.. oh joys! LOL!)

I can only liken the sound/feeling of your vertabra breaking to being shot in the back! :crying: Even though it was 14 weeks ago I still can't believe it's happened - It's all very surreal!

RE: Osteoporosis associated with pregnancy

JD — Thu, 04 Nov 2010 15:30:53 GMT

Hi Mixed up Mama, Okay, so it doesn't look like it's relating to being very slim then - just thought I would check.
How awful for you to hear your bones fracture, that must of been so frightening. I was never aware of my fractures happening, as I had what they described as crush fractures, which began with mild back pain after the birth. This gradually got more severe over time. I'll never forget getting up one night to go to the bathroom and as I moved, I had a pain in my back so excruciating, I literally screamed in agony. My consultant at the time, thought that a nerve had got trapped in one of the fractures :w00t:
I'm pleased to hear that Prof.Stevenson has been helpful. I'm due for a bone density and appointment with him next May and I'll be interested to see how my bones are, after being on HRT for the last four years.
The only other thing I wanted to mention is that my pregnancy was normal, apart from suffering from nausea for the first 3 months and the last 3 months!! My baby son arrived 6 days late and when he did finally decide to arrive, he did so very quickly, as I was only in labour for 6 hours - natural birth, with no epidural. Trying to mention as much as I can remember (it was 28 years ago) just in case there are any factors that we all share. Regarding the Vit D deficiency - my levels were extremely low, early this year, so I'm now taking Vit D3 supplements daily, plus I sunbathed back in the good weather that we had in June/July this year, without protection for the first half hour or so. For years I've been protecting my skin, because of all the horror stories about skin cancer, but ended up being deficient in Vit D as a result. Had a great tan this summer :cool:
Katherine - There is no history of Osteoporosis in my family, even in later life and my Mum has never had a bone density scan in her life and she's now 89 years old!!
Bye for now
JD x