[jltntl]

Hi all. My 14yo dd with SLE is complaining of coccyx pain saying it is especially bad at school and she can no longer slide back on chairs. This has been happening for a couple of months now.

She takes Plaquenil and thyroid hormone. Originally I thought maybe she was taking too much T4 thyroid hormone and we cut it back....but pain persists.

She cannot recall any injury to her coccyx so I am wondering if this may be SLE related.

I would appreciate any thoughts. Thanks

...Julia

 

[Maia]

I do have a lot of pain in that very area; in my case it may be due to other trauma to the area but it does seem to flare up almost randomly just like lupus. Laying on my back on the floor with my feet up on a chair helps me the most. Sitting in a chair is the absolute worst thing for my back pain in that area!

This is definitely worth mentioning to the doctor as it is interfering with her ability to do her school work. Hope it improves for her soon with meds or the flare just dissipates...

 

[Raglet]

talk to the doctor about it. My sister damaged hers (actually in childbirth!) but I do remember she had to have physiotherapy on it which was really helpful.

hope your daughter feels better soon

raglet

 

[LadyLily]

I had coccyx pain that arrived out of the blue. Sitting was excruciating and I found that I usually made excuses to stand wherever possible. I haven't had a diagnosis of lupus yet . . . I was diagnosed with juvenile rheumatoid arthritis in my teens which I am currently questioning - I did wonder whether the back pain could be related to this at the time as I didn't have any obvious cause for it.

On a practical note you can buy coccyx cushions (google it) which have a section cut away in the back which helps to relieve pressure on the coccyx area - this could help if your daughter has to sit a lot at school for example. There are varying treatments out there which all have varying degrees of success. I don't know where you are located but in the UK I was offered physio on the NHS to begin with - this involved infrared treatment, manipulation and acupuncture - all on the NHS - none of this worked for me and I was referred to a surgeon who eventually did a steroid injection and manipulation under general anaesthetic. This has pretty much done the trick for me as I've been almost pain free for 18 months now - if I sit for too long on a hard chair I will still get twinges but the relief has been incredible.

There is a very good website UK based which is purely about coccyx pain and gives you other ideas for relieving pain etc. I hope I'm not going against the rules by giving this to you but it really is worth a visit. I know just how desperate I used to feel about this pain - a car journey was agony and would make me want to cry so I feel desperately for your young daughter.

Lily

It won't let me post the website address but you can find it if you go to coccyx dot org

 

[halfpintfl]

Hi Julia, I don't know if this has anything to do with your case, but is your
daughter on the skinny side? That is what is in my case. Whenever I have to sit on a hard chair, it is the worst pain, but with me it is only because I have no "padding"
back there. I do hope you find an answer, and I deffinately think you should bring to your dr.'s attention, let us know.

 

[elisabethm]

Hi Julia i can't sit without a pillow that has little bits in that moulds to your back when you put it behind your back.They are like neck pillows that you get when you fly can't remember what they are called hope she gets something for it as there is nothing more than a sore back Elisabeth

 

[jltntl]

Hi everyone. Thanks so much for your replies. I will speak to her specialist about this but her appt is a long way off yet. I see everyone recommends special pillows but I know there is no way she'll take one to school.

She's not what I would call slim. She's a very solid tall girl who's grown heaps in the last year. She's got plenty of padding on her thanks to the Hashimoto's - but she's not overweight. So this pain is a bit unusual.

I check out all your suggestions. Thanks.

...Julia

 

[Raglet]

Could you just take her to her GP and ask for his advice ? If her rheumie appointment is down the track aways, your gp may be able to get some x-rays done and do some general investigating to get things rolling and see if she is having some sort of injury (even if she has no recall of it) or some other process going on. You'd then have the x-rays to show her rheumie when the appointment does come around. Also, if something crops up between visits to my rheumie and my gp doesn't like the look of what is happening, he just rings my rheumie, so that may well be possible ion your daughters case.

I see you are in Australia - I am in NZ, and our health systems are very similar.

I can TOTALLY understand why a 14 year old girl would not want to take a cushion to school - think of the embarassment and teasing ! It would be awful for her. Actually I wouldn't think much of taking one to work either .....

hth

raglet

 

[jltntl]

Hi raglet
yes, i suppose i shld get ball rolling with gp and xrays as u normally would do. its just these days i think it might be autoimmune or meds causing problem and always wait to see/ask others first.
wasted so much time on stuff that docs just don't seem to know about! Ha.:wink2:
thanks.
...Julia