Diagnosed with osteoporosis at age 32 - anyone else in similar situation?

[HannaB84]

Hi everyone, I'm new here. I was diagnosed in Jan after having anorexia for a decade. I have osteoporosis in spine and osteopenia in my hips. I know it's relatively unusual to have it at my age, but it is also an effect of chronic anorexia so my diagnosis didn't really surprise me.

I'd really like to connect with other younger people with osteoporosis and those who have it as a result of eating disorders. It feels quite lonely having the condition at my age and I think there's a real lack of awareness and understanding even among health professionals.

I'd really like to set up a support group with some other younger sufferers, both female and male, and see if we can help each other, and at least connect with others in a similar situation. Anyone interested in getting involved?

Hannah

[Lulet99]

Hello...

I've been looking for that sort of thing for years! I'm 38, I have severe osteoporosis now. I was diagnosed with osteoporosis at age 20/21 after having an eating disorder for less than 2 years, now 18 years later I still have an eating disorder, although not as bad, but my osteoporosis has got much worse..........

L

[HannaB84 in reply to Lulet99]

Hi Lulet, good to hear from you! I'm so sorry to hear your osteoporosis has gotten much worse. Do you see a rheumatologist and do you get any support from them or from eating disorders services?

I'm still in the early stages of osteoporosis, but I'm worried it'll get worse the longer I'm not fully recovered. I know that it's hard to recover when an eating disorder has been going on for so long, but I believe we can do it - and anything we can do to support each other is great!

I'd really like to set up a group for people in our position - struggling with osteoporosis at younger ages and/or osteoporosis caused by eating disorders. Would you like to help me do this?

I'm based in London and would really like a group that could meet face to face, but also have an online connection so that it would work for people based anywhere.

It'd be good to put together a list of people who'd like to be involved, and we could see if National Osteoporosis Society could help us set something up.

I can PM you with my contact details.

And it'd be good to be in touch anyway as it seems we're going through some similar experiences.

Hannah x

[Kaarina in reply to HannaB84]

Hi Hanna,

I agree it is a great idea of yours to start a group but for your own security it would be best if you deleted your email address in your posting. It is much safer to use the PM facility on the forum to exchange contact details. (private message).

You can easily delete your email address, by clicking on the "v" at the end of your posting. A drop down menu will appear and if you click on edit you can make any amendments. Then click on Edit response.

Just looking out for you, as this community is not moderated too often by NOS Admin and HU strongly advise against posting personal email addresses in postings.

[HannaB84 in reply to Kaarina]

Hi Kaarina,

Thanks for your reply and for letting me know about that Apologies too if I broke any rules about email addresses. I've deleted it and will use PMs to take things forward with anyone interested in starting a group with me.

Thanks again,

Hannah

[Lulet99 in reply to Kaarina]

Good point Kaarina! Thanks for looking out for those of us who have less experience using these forums.

L

[Lulet99 in reply to HannaB84]

Hello. I’d love to help! I live in Newark so meeting frequently wouldn’t be an option, but it’s an easy enough trip to London, just takes a while...1 1/2 hours so it’s do-able occasionally. I actually tried to set up a support group with similar criteria about 10ish years ago. The national osteoporosis soc put me in touch with a couple of younger people in my area, but there were only three of them and they didn’t wAnt to join support group. But now there are two of us and there is more access to things like Facebook and forums we might have a chance.

I currently see a rheumatologist he doesn’t do very much but at least it’s good to talk to specialist. I don’t get any help with my eating disorder....apparently I’m no longer thin enough even though I’m too light to have periods and my relationship with food is completely warped.

What help do you get?

L

[HannaB84 in reply to Lulet99]

Hi Lulet,

It's great you tried to set something up. I think it might be a bit easier nowadays with social media. It'd be great to have a group that is active online and then could also meet up face to face once in a while.

I have my first rheumatology appointment this week. I'm not sure they'll be able to do much for me as I've heard a lot of the treatments aren't appropriate for someone without periods. I'm in your situation without periods and I know how hard that feels.

I also don't currently get more support for the eating disorder, but I'm determined to keep going in recovery. I really think a lot needs to change in treatment - not just access to it, but also what it involves. A lot of what I got didn't work for me unfortunately. I'm trying to find my own way through things now...

[Lulet99 in reply to HannaB84]

Hello. Wow your situation is so similar to mine! I have a rheumatology appointment tomorrow..... my consultant Won’t give me any treatment cos I am too young. When I go they do blood tests to check calcium and vit d levels, and he wanted me to take the pill to restart my periods.......that’s another story.... anyway, how did your appointment go? Laura

[HannaB84 in reply to Lulet99]

Hi Laura, how are you? How was your appointment today? Hope things went okay. Mine is tomorrow morning, and not really sure what to expect

[HannaB84]

Hi Laura, really good luck with your appointment tomorrow. Hope it's not too upsetting or annoying, and you don't have to wait for too long.

My appointment is actually this coming Tuesday. It's my first one. Well, I went along originally in June, but the computers were down that day and I think the notes were lost in the system somewhere until last month.

I think Ill be in the same situation as you in terms of treatment, but I want to see if they can suggest anything, or at least think about referring me for another DEXA as it's been a year since my last one.

Let me know how tomorrow goes, and I'll let you know about mine on Tuesday too. It's really good to share this with someone!

[francherry]

Hi there, I'd be interested in helping set up a group, as it feels isolating being a younger person with osteoporosis (30s). I've had yearly DEXA scans for around 6 years and have had multiple fractures. The past three years have been very challenging due to repeated foot fractures. I can get to central London fairly easily. Would be interested to hear more and good luck with both of your appointments.

[HannaB84]

Hi Francherry, I'm really sorry to hear you've had multiple fractures. My osteoporosis was at quite early stages last time I had a DEXA but that was a year ago and I'm worried about where it's reached now.

I'm really glad you're interested in setting up a group too. It is isolating having this when you're younger and when no one realises that you have it, or what caused you to have it. This is how I've felt until very recently. Now I want to speak about it.

I'll direct message you my contact details, and maybe we could set up an email list. Then when we have more people, we could see if NOS will help us set something up. It'd be good to be an official group of theirs in terms of access to resources and support.

[Roseto]

How are tour Jones now?tour dexa improved?