Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Teenager in pain - need advice from other parents

Hi, Im new on here, my teenage daughter is having a really tough time, she is almost 15 and struggling at the moment - juggling pain against side effects of meds like tiredness, hassle from school about attendance, depression starting to creep in as her social life is affected too, she is just worn out and worn down, is there anyone who knows this scenario? Tips for school etc please

Hi,Sorry to hear your Daughter is going through this I had very similar problems at her age so know what she must be going through. Its a difficult question to answer.
What meds is she on at the moment? Tiredness and fatigue is a horrible part of AS as is Depression but having it at such a young age is even worse.Perhaps if you let her come on if only to read what others go through and what they do it might help her to understand more about the Disease.I can understand if your worried about her talking to people she doesn't know. But this site is safe and we all support each other and there are some younger ones on here who post sometimes.

Kevin

Hi, She is on Tramadol and naproxen, she isnt offically diagnosed as we r still waiting for results back but our GP and a physio have mentioned AS to us and since we have read up - it seems just a matter of formality waiting for the results, she has been referred by the rheumatolgist to a pian specialist but we r on a waiting list She is on the internet a lot but I think its too much just yet to put her on here - she has to know for sure and have a bit of time to get to grips with knowing. Then I will suggest this to her to come on here - I just want to wrap her up and protect as much as poss at the moment - dont know if that's the wrong way to go about it - just seems so much to cope with.

Sorry about typing error - should say pain specialist

Yes I can understand you protecting her until you have a Diagnoses. Tramadol can make her feel tired and sleepy.Naproxin is an anti inflammatory and you need to be careful when taking these always take with food never on an empty stomach and she should be taking a stomach protector.If you don't mind me asking what country are you in.

Kevin

we are in England, the biggest problem is school, they have a mission to improve attendance rates yet she is so exhausted and in pain, I have had to help dress her over the last week. She keeps feeling really faint - is this a common problem? Thank you for taking the time to reply to my questions x

Kevin, you also had symptoms very young then, what age were u diagnosed and what help was offered - just wondering what to expect, tho I know everyone is different

Cant say I know about fainting the mixture of the drugs and the pain might be the cause. As you can see I'm in England as well I'm in Sussex.Knowing the way the NHS works I would put pressure on your Doctor to get the Rheumy appointment brought forward.She cant go on like she is at the moment has she had any Xrays or blood tests yet.

Kevin

My pains all started when I was about 7 yet I wasnt Diagnosed until I was 30 things were a lot different then Medicine has advanced a lot since then and there is a lot more help out there.
Different people find different things to help them some use NSD or low starch diet but that doesn't work for every one.

Kevin

I'm really sorry your daughter has to go through this. I had a bad flare when I was 15. My parents went to the principal and my teachers and I basically got to set my own schedule. I probably missed 50% of my morning classes for that year, but my teachers did not mark it against me and I was able to maintain an A average, since I did all the work and participated in class when I was there.
That was back in 1979. If any of my children experience the same thing, I will work with the schools to get the proper accommodations.
Good luck.