Bones Hurt

[Bear15]

My bones hurt, not just my joints, something as simple a putting a handbag on my shoulder courses me discomfort. It's been in the last few weeks and getting worse, particularly my arms, shoulders, legs, as well a the purpura spots getting largers.

[Boudica1]

Hi, have you had your vit D level checked lately? I used to have bone pain and when they checked my vit D level it was very very low, since being prescribed vit D the bone pain has improved.

Sorry I can't advise about the purpura and can only repeat what my dermatologist said when I asked and that it's normal for someone with condition , SS, vasculitis and Jessners Lymphocytic infiltration.

Sorry I'm can't be of more help.

[Bear15 in reply to Boudica1]

I take 2 X vit D a day, but thank you x

[Hidden]

Yes I absolutely relate to what you are describing. My little petechaiae spots which usually accompany my leg pain disappeared with steroid jab in June and haven’t returned - but the rest has.

I have just joined and posted on the PMR HU because it occurred to me that this could be PMR - which I believe is a relatively common form of vasculitis. I just wondered because my upper body is more affected with this flare up than my usual Sjögren’s flares and my PV/ ESR is exceptionally high even for me. Responses suggested this is exactly how PMR feels so I hope to ask the Sjögren’s rheumatologist I’m seeing privately a week on Monday.

[Bear15 in reply to Hidden]

Thank you for your reply, I also have pain and swelling in my neck. I have never heard of PMR, what is it?

[Hidden in reply to Bear15]

nhs.uk/conditions/polymyalg...

[Mandypandy1969]

I have fibromyalgia/sjogrens and sjogrens, I have struggled to carry my handbag on my shoulder for a couple of years, I can't carry shopping as my arms are so weak anyway. My shoulder bone at the moment is painful to touch.

[Bear15 in reply to Mandypandy1969]

Thank you for your reply, I also have pain and swelling in my neck

[Hidden in reply to Mandypandy1969]

nhs.uk/conditions/polymyalg...

[Salzer]

I can't wear a handbag on my shoulders any more either as it's too painful. Have tried different types of bags to see if any are easier to cope with. I seem to be able to manage a light one with two short straps for a short while. Longer straps are a disaster. I know it's a small thing but frustrating when your whole life is in your handbag! I'm having to learn how to travel light. Sorry I can't offer any suggestions but can very much sympathise.

[Bear15]

Thank you for your reply, forgot to the is in the back of my neck too and its always swollen.

[Salzer in reply to Bear15]

I have a lot of neck and head pain too. Sometimes hurts to hold up my head. A physio gave me some gentle stretches and exercises to do and I take anti-inflammatory pain killers which help to damp down the pain. Hope you find some relief soon.

[Freckle1000]

Bear - there are so many reasons why youre bones are aching - but it might be worth getting you're immune cell levels checked - white blood cells, lymphocytes leukocytes etc. Sometimes too much immunosupression ( or confused SLE cells can, forgive the technology - consume these cells. (C4 test for the complement cannibalism.......I think ?) -you're Doctors should know.

It's always been a good rule of thumb for me to get these things checked out if the bones start aching even slightly.

[Cas70]

Try Vit B12 spray with Vit D - was advised to take both together. A little Turmeric a day has helped muscle and joint pain. I spray my legs with Magnesium every day too. All these have helped over the years. Deep Freeze do a pain plaster that lasts 12 hours. Olbas Oil rubbed into muscles and joints helps too. Rest, even for 10 mins during the day. Good luck