Knee pain: Hi my 10 year old daughter has lupus and... - LUPUS UK

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Knee pain

Lipstick9 profile image
18 Replies

Hi my 10 year old daughter has lupus and has awful knee pain for the past few months esp at night. She never gets a full nights rest:( Have been told by doctors it is unrelated to lupus and they seem baffled. Anyone else experienced similar?

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Lipstick9 profile image
Lipstick9
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18 Replies
honeybug profile image
honeybug

Hi Lipstick 9 😊🌸🌿🦋

I’m sooo sorry that you’re 10 yo dgtr has lupus. Please let her know this and tell her I send her my love and get well wishes and I prayed for her.

Since she had lupus which is autoimmune related her knee might be another autoimmune condition or rheumatoid arthritis or fibromyalgia or connective tissue disease Erythromelalgia ( mine is inherited I’m 1 of 3 worldwide rarest form) or tendonitis. bursitis Bone conditions symovial fluid swellings so many things that children can get these days.

I’m in the USA 🇺🇸 and here we have a world renowned clinic you can research some conditions.

mayoclinic.org

I’ve been referring a lot of members to on several forums.

I hope this will be helpful to you dear and that your precious dgtr will be diagnosed treated get relief and healed soon.

Gentle gentle hugs 🤗 love 💗 and xxx

😊🌸🌿🦋🙏

Lipstick9 profile image
Lipstick9 in reply tohoneybug

many thanks!

honeybug profile image
honeybug in reply toLipstick9

Xxx

Wadekirstyn10 profile image
Wadekirstyn10

I have chronic pain in both knees all the time and have been told that's it's due to my lupus. Pain killers don't really work with it, but my mum bought me an electronic heat pad that help's lessen the pain. So that might be something to look into if you can.

Lipstick9 profile image
Lipstick9 in reply toWadekirstyn10

thanks will def try that!

loopy-lou profile image
loopy-lou

So sorry that your daughter has lupus. I have had chronic knee pain in the past but now it has migrated to both my hips. Again, it presents itself worse at night interrupting sleep. Have you tried a tens machine? I don't know if they can be used on children though. Good Luck.

Lipstick9 profile image
Lipstick9 in reply toloopy-lou

good idea will try and thank you!

tamib0713 profile image
tamib0713

I have worst knee pain at night as well. Warm, moist heat pad, wrapped all around

Lipstick9 profile image
Lipstick9 in reply totamib0713

thank you!

Pussbella profile image
Pussbella

Very sorry to hear about your daughter's knee pain.

I had extreme knee pain largely at night when I was your daughter's age. Sometimes in one knee and sometimes the other so no one believed me. Finally my father took me to a sports medicine doctor (who were few and far between in those days) and after X rays etc he diagnosed Osgood Schlatters disease and Johanssen Sinding Larson. (I don t think I have spelt these right - but hopefully close enough!) Apparently they go together sometimes and are more likely when you are growing.

I did not have lupus so my experience is probably different but I wondered if it would be worth investigating.

Hot water bottles over the painful areas used to help and I had to stop all activities which involved jumping.

I very much hope your daughter gets relief from her pain.

Best wishes

Bella

Pussbella profile image
Pussbella

Ps I spelt Osgood Schlatters OK but the other syndrome is now called Sinding Larsen Johanssen.

Again, good wishes to you and your daughter.

Bella

Lipstick9 profile image
Lipstick9 in reply toPussbella

thank you!

Shellys22 profile image
Shellys22

I have this swelling pain full nees doc all ways say not lupus related they so wronge as this worse for me during a flare

chrisj profile image
chrisj

Not sure this will be of any help to you but here goes....

Got up one morning in april to agonising pain in one knee. So bad my son called the doctor out who put it down to cartilage loss, she prescribed paracetamol and tramadol. I was in pain for weeks, hobbling around on 2 walking sticks afraid to leave the house, pain killers not helping much

Its gradually settled down but its still not comfortable. I was referred to a physio and diagnosed with patellofemoral, he said my knee cap was out of alignment and showed no interest at all in any cartilage loss as the gp had suggested. No scans, he said it was a waste of time as nothing would show up. I went to see him one more time when he asked if I'd be happy with a 6 week course at the sports centre to do gym exercises for lower limbs. I'm not thrilled but as he insisted it would help with the pain and stengthen the muscles around my knees I agreed to go. My first session is this afternoon, taking my reluctant son with me

I'm so afraid that more stress on knee joints will make things worse but then I'm no expert so I'm going to give it a go. Also concerned that no one's sent me off for a proper look at the state of both knees...wish me luck and I hope your daughter at such a young age finds some help xxx

Lipstick9 profile image
Lipstick9 in reply tochrisj

thanks and def good luck!

baba profile image
baba

Hi Lipstick9,

Sorry to hear that your daughter has Lupus.

Lupus can cause joint and bone pain, often with no visible swelling or joint damage. There is lots of good information on the main Lupus UK website:

lupusuk.org.uk

Is she under the care of a Rheumatologist or Lupus specialist?

As far as i am aware the only Lupus center of excellence for children is at Alder Hay hospital in Liverpool.

Lipstick9 profile image
Lipstick9 in reply tobaba

yes she is diagnosed and under treatment and thanks will check out Lupus website :)

Imom profile image
Imom

Hi there. So sorry for your daughter. I have very bad knees and need them repacked but my Rheumotoligist wants me to wait. Oltaren Gel an RX really helps with pain and lets me sleep. It ibuprophen tropically applied. Maybe you can get a prescription. Hugs to her!

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