Advice please

[Bea_56]

Hello all and I do hope this post finds you well or at the very least comfortable. I have recently been diagnosed with osteoporosis and wondered if this can cause severe pain in my legs at night. It’s been an ongoing issue for 2 years and is so severe I cannot sleep. Doctors are baffled and on reading about Osteoporosis online all states no pain until I get a fracture

[Met00]

You're right that osteoporosis itself isn't painful, although fractures resulting from it of course are very painful. However, some of the causes of osteoporosis are painful, including hyperparathyroidism and low Vitamin D. Have you had parathyroid, calcium and vitamin D blood tests, all from the same blood draw, along with tests for thyroid, coeliac and a full blood count? If those don't show up anything, I would push for an MRI scan of your lower back, to see if there's a fracture or herniated disc there causing the leg pain.

[Bea_56 in reply to Met00]

Morning thanks for the advice I am a coeliac but will ask for the other tests. Anything that will help right now will be amazing!!

[Graceissufficient in reply to Bea_56]

Restless Leg Syndrome has presumably been ruled out?

[Bea_56 in reply to Graceissufficient]

Yep!

[Graceissufficient in reply to Bea_56]

Also, may I ask, when were you diagnosed as celiac?

And do you still have some symptoms, eg bloating?

[Bea_56 in reply to Graceissufficient]

I was diagnosed 15 years ago x

[Graceissufficient in reply to Bea_56]

Sorry to barrage you with questions. I wondered why RLS was ruled out, and given that celiacs on diagnosis often are low in iron, and that low iron can link to RLS, I wondered if there could be a link there. Maybe you have overcome all the deficiencies celiac can produce if you were diagnosed 15 years ago, but given that celiac also causes deficiencies in the fat soluble vitamins D and K which are crucial in preventing osteoporosis, I wondered if maybe you haven't.

[Graceissufficient in reply to Graceissufficient]

And also B12 deficiency can cause leg pain and I believe is difficult to test for. There are other forums here v knowledgeable in these areas.

[Bea_56 in reply to Graceissufficient]

Please don’t apologise I appreciate all the advice! They have said this is related to my celiacs and I kind of knew it was coming as I was diagnosed with osteopenia 2 years ago. I am on all sorts of vitamins including B12. To be honest the doctor just dismissed RLS so maybe I will ask for that to be my next test.

[Graceissufficient in reply to Bea_56]

My son has RLS ... from memory, shooting pains in the legs which mean you have to move them all night, can't sleep, torture. It can be linked to low serum ferritin and maybe low magnesium, but putting those things right doesn't necessarily cure it.

RLS isn't diagnosed by a test but by a set of symptoms.

B12 deficiency is complex and not nevessarily helped by vitamin pills. The pernicious anemia forum may be worth a read.

[ROSModerator Partner]

Hi Bea_56 ,

Just wanted to pop in to wish you a very warm welcome to our community Coping with pain can be exhausting, which is even harder when that pain disrupts our sleep as you describe. It's good to see you connecting with our valued members, there is a wealth of experience and kindness in our community and sometimes it can help just knowing we're not the only ones experiencing something!

In case you haven't already checked out our website, we have lots of information and support for osteoporosis on there, including information about our specialist nurses helpline: theros.org.uk/information-a...

Hoping you can find the support you're looking for, and some relief from the nightly pain.

Wishing you all the very best,

Lulu

ROS Moderator

[Bea_56 in reply to ROSModerator]

Thanks Lulu very much appreciated x

[Fatpidgeon]

Hi Bea56,

I would push for an MRI scan of the lumbar spine. I suffer leg pain at night from time to time and when it starts I try to change position. I had a MRI some years ago it showed significant scoliosis, disc degeneration, foraminal narrowing and impingement. Also, please check that the GP does all the tests to exclude other causes of osteoporosis.