 Posted 18/05/2010 13:35:02
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I can't tell you how happy I am to find this forum. I was diagnosed with Osteoporosis due to pregnancy in 1981. I am now 55. My GP at the time, put it down to back pain after the birth. Three months later, in great pain and hardly able to pick up my baby son, I was referred to a specialist, who found I had multiple fractures in my spine. By this time, I had hunched up like a little old lady!! I spent five weeks in hospital, flat on my back. My spine did straighten up, but I had lost 3 inches in height and still none of the doctor's knew what was wrong with me. I was finally referred to a wonderful doctor in London called Prof. John Stevenson, who told me I had Osteoporosis due to Pregnancy. He then told me
to get on with my life normally, but to promise him that I would never go Sky Diving or Deep Sea Diving. I was not put on any medication or calcium, as I didn't have a calcium deficiency. Apparently, it was just my hormones going haywire during pregnancy. I have lead a normal life,
keeping fit, walking my dogs for miles every day, using the gym, gardening and running a business with my husband. I was too scared to have another child, but I am very grateful to have my wonderful son, now aged 28. I continued to see Prof. Stevenson yearly for Bone Density Scans and I did make up some bone over the years. When I reached 50, Prof. Stevenson insisted I went on HRT, which I'm still taking (Evorel patches) as I couldn't afford to lose anymore bone. Also I have to mention that a recent blood test showed that I was very low in Vitamin D, so I'm now taking Vitamin D3 supplements. I'm also looking into Bio Identical Hormones, so I'll keep you posted on that.
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Posted 06/06/2010 16:06:48
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Hi, I completely sympathise with you all.
I have just had a baby boy in January this year - my first baby!. I spent 12 days in hospital with a strep B infection and then started my life with my new baby which was great. About 1 month later I had excruciating pain in my lower back after picking my baby up in the car seat. Next I bent over to pick him up out of the baby bouncer and something clicked in my back and I almost dropped him. Then I collapsed on the floor unable to move. My partner got me a physio who asked me to lie on my side and cough and something went and I couldn't get off the couch! She was worried! My partner has a high-flying job and suggested I go to my family for support as since the first incident I had not been able to pick up my baby or do anything independently. I saw 4 GPs during this time and they all said that it was post-pregnancy backache - even though I pointed out it was an agonising pain! I came down to my family and was taken to hospital in an ambulance and then discharged on painkillers after having an X-ray done. I collapsed a few days after and then a few days after that I coughed on a piece of toast whilst breast-feeding my baby one morning and my back completely went and I could not move - complete agony - I went to hospital in an ambulance and one of the Registrars at the time advised me to go home as there were "bugs in hospital"! The OTs were drafted in but I couldn't get up off the bed despite having taken loads of morphine etc. They admitted me Thank God. They said that my original X-ray had shown 6 vertebral fractures with the L1 virtually collapsed, I stayed in hospital for 3 weeks during which time I had numerous MRIs, CT Scans even a radioactive bone scan to diagnose the problem. They were looking for a metastised cancer - lung, breast or bone. I was petrified but my mum and sister stuck with me whilst my partner came 'when he could'. They referred me to the leading spinal surgeon and the osteoporosis expert who were excellent (this was in the NHS!) - they suspected 'pregnancy associated osteoporosis with hypercalcaemia'. They recommended a 'vertebraplasty' in addition to a bone biopsy to check for Myeloma (bone cancer). Under sedation I had this - a procedure where they inject cement into the collapsed vertebrae (in this case the worst ie. L1) and immediately it relieved the pain - luckily for me this NHS is apparently leading in this field. I was released in mid-May on painkillers and calcium/Vit D3, am still in a back brace and have follow up appointments this month. They gave me three case studies (Journal of Internal Medicine - Tran and Petrovsky) to read on it all which was an eye-opener.
Not everyone knows but an osteopath I met sent me an article on egg shells and how they are not only high in calcium but also in 26 other vitamins and they are excellent for osteporosis - when I get past this initial stage I will look at this remedy.
Throughout this whole period in hospital, my sister and mother brought my baby in to see me everyday - SO upsetting not to be able to have my new life with him in the normal way. They said I had to stop breast-feeding him the day I went into hospital - I feel I have lost a valuable 5 months with my baby and it has thrown me somewhat. It is my family and friends who have provided my support - they have been fantastic. Enough said about my partner - my relationship is now on the rocks - his family go on about how this is their nephew - completely unfeeling and cold to me - they imply in everything that it is my fault I am with my family and in this position. I always feel that things happen for a reason and this has certainly had its upsides; my sister has set up a justgiving account for Myeloma UK, my baby boy has really bonded with my family and I have been in touch with a journalist to raise awareness about it (and also about Strep B infections which people do not know about!). You know who your friends are when the chips are down!
Carolina
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Posted 04/08/2010 17:25:25
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Hi Carolina and all,
I am very glad to have found this forum! I am 39 and have just been diagnosed with pregnancy related osteo. The pain started 8 weeks after I gave birth. I now have 3 fractures with compressed vertebrae in my thoracic spine and I am totally confused as to what I should or should not do in terms of recovery. I was given just Calcium and vitamin D supplements as I am still breastfeeding (baby is almost 4 months old). Doctors are recommending me to stop breastfeeding ASAP but there is no clear evidence that this will help return my bone density to normal. Furthermore, if this condition is not caused by malnutrition or Ca deficiency, my supplements are in reality not necessary. Just curious to know from you and others how long it took to return to a relatively stable bone density and whether or not you stopped breastfeeding... And regarding pain, its been a bit over 2 months now since I first started feeling pain in my back, and although it was getting better for a while, the pain has returned (not as bad as the start but still uncomfortable). Either I got another fracture or I must be aggravating it somehow ( it hurts most when I sleep flat on my back or sit up and lean my back against the chair, basically when there is pressure applied to that area of the spine). Have your bone densities returned to a decent level? How long did it take? Thanks, kk
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Posted 04/08/2010 18:05:22
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Hi KK. I so know what you are going through, but just remember you are not alone and there are doctors out there that know all about Osteoporosis due to Pregnancy. I can only suggest the doctor that has looked after me for 28 years and that's Professor John Stevenson at the Royal Brompton Hospital in London. If you live a long way from London, I would suggest you find an Endocrinologist in your area and hopefully they will be able to help you. I had to give up breast feeding my son after only feeding him myself for 3 months, which was very difficult, but I know it helped my bones recover much quicker. As you mentioned, it's not a calcium deficiency that causes Osteoporosis due to pregnancy, it's all about hormones, which Prof.Stevenson will tell you too. Please don't think it's all doom and gloom, as the same thing happened to me and I was worried I would end up in a wheelchair, but as I said before, I have been leading a completely normal life and feel fit and healthy at the age of 55.
You could also make contact with a bio-identical hormone doctor to prescribe natural hormones to build up your bones again - be warned though, most doctors and GP's don't know anything about them, as it's very specialised. There are also lots of books you can buy on the subject and I would recommend one called 'It Must Be My Hormones' by Dr. Marion Gluck and Vicky Edgson. Good luck and keep in touch.
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Posted 06/08/2010 21:46:25
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Hi
I am now under the care of the leading osteoporosis expert and a spinal consultant at Royal Devon and Exeter Hospital - they couldn't work out what I had initially so gave me all kinds of tests which was frightening to say the least. At least you know what you have. I was advised to stop breastfeeding the day I went into to hospital and I am sure that it played a major part in my recovery aswell as the vertebraplasty that I had in one vertebrae - Exeter is a national leader in this treatment I think. I never wanted to have a vertebraplasty as I was frightened of the possible problems but am glad I did in the end. Infact, almost the following day I felt better although I could not walk for a couple of weeks and spent the next 10 weeks in a brace lying on my back most of the time - not doing anything with my baby. It is now August and I have been doing some hydrotherapy, have physio and pilates course lined up and am much better, indeed for the first time in several months, I am starting to pick my baby up.
They gave me three case studies (an Australian study - Internal Medicine Journal 2002; 32: 481- 485 - Brief Communication - Pregnancy-associated osteoporosis with hypercalcaemia - H. A. TRAN and N. PETROVSKY) in which all three women stopped breastfeeding and they said that bone density returned to normal 6-12 months "after weaning and the return of normal menses. Recurrence in later pregnancies is unusual but has been reported to occur. Calcium supplementation does not seem to prevent bone loss during lactation. Breast-feeding should be discouraged in future pregnancies because of the marked bone loss.... and high risk of additional vertebral fractures.... Naturally lactation should be weaned and rapidly stopped". According to these studies (there is no other research on the subject) there are three hypotheses that have been advanced 1) a hormone change 2) pregnancy is merely a stressor which unmasks pre-existing osteoporosis 3) inherited defect in collagen synthesis (?) ....... It really broke my heart to have to stop breast-feeding my baby but I realise that my health is important for him... It has been a traumatic experience and excruciatingly painful. I collapsed twice and was in agony - but then I had 6 vertebral fractures. I would recommend you see an expert before (heaven forbid) you develop further fractures...... I certainly would never wish the pain I had on anyone and would strongly recommend they seek further advice. Exeter has been excellent and extremely thorough with me. GPs don't understand this problem (I saw 4 separate ones!), indeed even the osteoporosis expert and spinal consultants said it had been a learning experience for them.
Please seek further advice. Best of luck and keep me updated on your progress.
C
Carolina
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Posted 07/08/2010 17:32:00
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Hi Carolina, KK & all,
Carolina, it looks like you've been lucky at the Royal Devon and Exeter, as they seem to know all about Osteoporosis due to Pregnancy. I was not so lucky, when I had my son, back in 1981. I was in hospital for 5 weeks flat on my back, which did straighten my spine again, as I had hunched up like a little old lady, by then. All of the doctors were baffled as to what was wrong with me and I had endless blood tests, bone biopsies and even a duodenal biopsy - you name it, I had it!! I was in a private hospital and my baby son was in a cot in my room, but I couldn't pick him up or cuddle him, so I just had to watch, while the nurses looked after him for me........ this was so hard for me. When I was finally allowed to leave hospital, I had a special spinal brace contraption made for me, so that I could pick up my son without causing further harm to my spine. (By the way, it was only my spine that was affected). A few weeks later, I was referred to Prof. John Stevenson. He was the first person to tell me that I had Osteoporosis due to pregnancy and he also told me that I must take off the brace and never wear it again, as I needed to get movement into my spine to help build up the bone again. I saw him every year for a bone density and I made up my bone to near normal levels again fairly quickly without any medication or supplements. Walking definitely helped me build up the strength in my bones again. Obviously, Carolina, you need the brace after your operation, but hope that you can take it off soon, so that you too can get some movement back into your spine. I want to wish you all well and please believe me, you will increase your bone density again and be able to carry on with your lives normally and enjoy quality time with your young babies, which you all so deserve. Best wishes, JD x
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Posted 08/08/2010 21:50:06
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Hi JD
You poor thing - actually I could also not lift or carry my baby either and I understand completely how traumatic this is. Indeed thank God it is now 2010 as I bet things were a lot less organised back in 1981. It makes me wonder how many women are misdiagnosed. I only started lifting my baby a few weeks ago aswell as taking off the brace - I have been fortunate enough to have my sister and Mum's help with him - at least that is family. However, I have had some real pains in my back in the mornings the last few days and so have resolved to lay off lifting him for a while. Actually the staff at the RD&E Exeter did not know much about the Pregnancy-related Osteoporosis and that is why they started testing me for all kinds of cancer plus radioactive isotope x-rays etc - they said that it was the first case they had really known of. Anyway, thanks for the advice, I value it.
What other activity have you done to build your bones - things like 'bodypump' or pilates?
Take care
Carolina
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Posted 09/08/2010 10:28:32
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Thank you JD and Carolina for your replies. It means so much to me to hear from others with the same problem.
JD, what hormones are going askew? They did all kinds of hormone tests to me and everything seems to be OK. I live in Croatia and I have many unanswered questions and am a bit desperate. I would love to contact Prof Stevenson, but I don't know how. Are you still in contact with him? If so, would he mind if I sent him an email with a few questions, or give him a call? Can I first give YOU a ring?
Carolina, how can I get a copy of these case studies.
I too was advised to wear a brace but to be honest with you, I feel much better NOT wearing it. The pain has significantly subsided but I still can't lie flat on a bed at night. I am still breastfeeding (almost 4 months now) but will stop soon. But I am not sure whether breastfeeding makes things worse or simply delays the onset of the recovery period. My intuition tells me that if my condition is due to hormones from pregnancy then things should start reversing soon after delivery whether or not one breastfeeds. Breastfeeding naturally lowers bone density because of extra Calcium intake of baby, but the cause of my osteo is not low level of Ca. Even the NOS is not sure of the impact of breastfeeding on this syndrome. I suppose it is important to get menstruation back to reverse the process of osteo and hence we are advised to stop breastfeeding? Thanks, kk
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Posted 09/08/2010 12:19:38
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Hi Carolina & KK.
In reply first to Carolina - I'm sure things must have improved slightly, but I'm still concerned that doctors still don't seem to know anything about Osteo in Pregnancy and just from seeing the amount of women writing on this forum, makes me realise that there are many women out there that are still finding it difficult to get a correct diagnosis. I understand that this is an illness that affects only a small percentage of the population and the medical profession only seem to concentrate on 'common illnesses' sadly! Also regarding your question about exercise - I walk (fast) 2 miles every day with my dogs and I use the gym twice a week, using machines such as a cross trainer, a tread mill, rowing machine, hand weights and a Power Plate Machine, which apparently is good for building bones. Any weight bearing exercise is good for your bones, so walking is good and also Pilates and Yoga would be beneficial too.
KK - The hormone that appears to go askew is Oestrogen and for some reason, in our cases, we seem to lose too much of this hormone during our pregnancies. As I mentioned before, I am doing lots of research into natural bio-identical hormones and I have also read that Progesterone is also crucial for building bones along with Oestrogen.
As regards, making contact with Dr. Stevenson, can I suggest that you make contact with him either by phone or email and here is a link to his website, which will give you all his contact info: http://www1.imperial.ac.uk/medicine/people/j.stevenson/
CAROLINA - maybe you could get the doctors at RD & E to make contact with Dr. Stevenson as well.
Also want to mention, that there is no history of Osteoporosis in my family at all - How about you?
Keep in touch an let me know how you're all getting on.
All best JD x
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Posted 11/08/2010 10:54:02
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Thanks JD! I will have my oestrogen level checked tomorrow. Should I test for other hormones too, like Estradiol, progesterone, etc...or will testing the oestrogen level be adequate? I sent Prof Stevenson an email. Waiting to hear from him...
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