Osteomalacia

lizziejay

Hello, I've just joined after talking to an advisor. I'd not heard of osteomalacia before. I knew I had osteo arthritis in one hip but this is new. I'm struggling with pain relief and getting a balance re. movement, rest, adapting, I'm sure this won't be new to people already here. From time to time I get very down with it. I'm on all the usual meds for the condition. On a bad day like today it feels like all my joints are on fire. I'm looking forward to finding out more from folks who know what this condition is like. I'm 71, avid gardener and dog walker former jogger before this hit me. Hi to you all from North Wales.

Lizziebeth

Hi. Nice to have a fellow north Walean on the forum. Croeso.
sorry to hear of your diagnosis. Hopefully it will improve with treatment.
Unfortunately the waiting lists here are very long. I’m waiting for an initial appointment with orthopaedic doctor which I understand is 10 months from referral, then about 2-3 years after that if you need an op.

However, chatting here & reading posts is very helpful.

noddingtonpete

Hello @lizziejay and welcome to the Online Community. We are a friendly and supportive group and I hope that will be your experience as well.

Osteaomalacia is something I'd not heard about but I've included below a link to the Information we have on our website.

https://www.versusarthritis.org/about-arthritis/conditions/osteomalacia/

I hope that others will connect with you soon who have experience of this but in the meantime please keep posting and let us know how you are getting on.

Best wishes

Peter

lizziejay

Thanks noddingtonpete. I had read that article and it's not a condition I'd heard of before either. It isn't arthritis really so I'm not surprised there's not much about it here or on your site. In fact there's not much anywhere about it other than descriptions - I'm looking for treatments and ideas about chronic pain relief for it. I'm on the vitamin D and calcium treatment which isn't working yet and I have Looser Zones and there doesn't seem to be any treatments other than what I'm already on. I seem to make a habit of this - a sarcoma a few years back was described as one in a million with no treatment for it other than wide margin surgery. Talking to your Helpline helped but again nothing really I didn't already know, other than one thing I think is important - you know you can take paracetamol and ibuprofen together? The max paracetamol in 24 hours is 8 but the max ibuprofen in 24 hours is 6. Other people might not be aware of that. One of my daughters is an O.T. and she's going to ask medics and physios she works with for ideas. The condition when it affects children is rickets which is well known and so I'm going to look into that a bit. I am suspicious about vitamin D and calcium being the only treatment, which in my case (and possibly others) doesn't seem to be working.