Bone density and avoiding Osteoporosis / Osteopenia in severe M.E / CFS

If you have severe M.E or any type of long term illness it's worth thinking about bone density.

My experience

A friend with severe M.E was diagnosed with severe Osteoporosis at the age of 21, I was 25 at the time and immediately asked if I could be tested. My consultant told me to expect it to show Osteoporosis and my GP referred me for a DEXA scan. It showed I was at high risk of fractures, especially hip ones. With treatment a follow up scan showed my bone density had improved, I am sure if it hadn't been for my friends diagnosis my bone density would still be getting worse. I posted on Facebook and several other people went to get tested.

Risk factors

Risk factors include poor diet, low weight, low vitamin D, long term steroids and not weight bearing. At various points over the years I've met all those criteria and yet no doctor had ever raised the possibility of bone loss.

Testing

Aside the traveling aspect the actual test is fine. They can either do a DEXA scan or an X-ray of your heel bone although I'm told the results aren't as accurate of the heel bone as the DEXA. For the first part I had my hip scanned, I laid on my back and they strapped my foot turned inwards to give the best position of my hip for the scan. As my feet naturally turn inwards these days this was pain free and the scan didn't take long. Next they put a block under my knees so my spine would be flatter, again as I lay with my legs up normally this was fairly comfortable. The arm moved up and down my spine and took about 10 minutes. It's not noisy or claustrophobic at all and doesn't touch you. You don't need to get undressed or changed into a gown for the scan.

I also had bone profile blood tests done and vitamin D

A picture of a DEXA scan

Treatment

I was started on massive doses of Vitamin D and also calcium (both prescribed) and given a physio plan. Although standing and walking is clearly best I was given tiny exercises to do through out the day like pushing my knee into the bed or foot against the footboard, anything to add a little resistance through my bones. We also discussed starting on the pill as Oestrogen can help but I decided against this. There are also drugs (Including oral or IV) for Osteoporosis but we decided to wait and rescan with just vit d/calcium/physio.

I rang The National Osteoporosis Society helpline and spoke to a nurse who was very helpful and sent me some information in the post. I obviously knew the old advice to drink milk (although I know some disagree with that) but they told me about things like research that eating prunes can help and about the different drug options. Their site is full of information www?not.org.uk

I would add that you don't need to have osteoporosis/osteopenia or scans to start treatment. Prevention is really important and if I could go back in time I would work on this from day 1 of becoming severe. I asked my physio of what kind of duration of being bed bound would bone density start becoming a problem, she said the honest answer is she doesn't know, even as professionals it's not something they tend to think about in young people.

For more help on preventing or treating bone density problems see here