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teenager in constant pain..

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Chronic Pain
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Posted 10/19/2013 6:08 PM (GMT 0)
Hey,
So I'm a 16 year old girl and I have had knee pain since I was 8. A few years ago this progressed to constant pain in my hands, wrists knees and ankles- now this is also moving into my feet and hips. I don't know anyone else who suffers like me.
I have seen a rheumatologist who at first said they suspected arthritis and now basically have no idea. If anyone knows any obscure conditions or even mundane ones that might not have been picked up please let us test for them.
The main reason I'm here is because I am really struggling with being in school. I am constantly exhausted and really struggle to concentrate on the lessons and things. I have a laptop to use to try to avoid straining my hands but it's not really much different now. I don't know what to do next because I'm in my final year so lots of exams and revision and I'm really struggling to cope.
More about my pain then. The knee pain I used to experience was a dull ache which would suddenly become sharp and cause my legs to collapse under me. My general pain now is always an ache, whether I'm moving or resting, that will become sharper and more painful if I put weight on it or move it too much.
If anyone has anything to say please reply :)
Thanks,
purpleape
Posted 10/19/2013 6:38 PM (GMT 0)
Hi purpleape! and Welcome to HW/CP! Right now I have to pick up my boys from the ball field, so I can't respond with much atm - but I wanted to take a sec to welcome you (tho sorry that pain is what caused you to find us!). I had terrible knee pain/issues when I was a teen. I actually had horrible 'growing pains' during my pre-teen years that affected my legs - it was AWFUL! The pain you described sounds very familiar. I injured both my knees playing basketball - dislocating one of my kneecaps.

I really have to go now, but I'll be back on later - and others will be here throughout the weekend. Some days tend to be a little slower than others, so please don't feel you're being ignored if you don't get many responses right away - you will definitely be hearing from other CPers. Hang in there!

And again - Welcome! :-)
Posted 10/20/2013 9:24 AM (GMT 0)
Hey
I'm just happy someone has replied :) At first they put it down to growing pains but now they're basically just ruling things out and have decided it's not just growing pains because of the nature of it. I've only ever broken my leg once and no other injuries to think of so I'm guessing it's not that. I think one thing that exacerbates it is my stress levels but I also have anxiety so regulating them isn't easy!
Thanks again :)
purpleape
Posted 10/20/2013 10:48 AM (GMT 0)
Hi purple and welcome to HW. Have you seen a orthopedic Dr? A knee specialist? Have you had an MRI? Also a Infectious disease Dr that can rule out such things as Lymes? There's so many things it could be that a Teaching hospital is your best bet. There use to seeing out of the norm and picking up on things regular Drs miss.

Sorry your having such a difficult time and if you live in a state that has a virtual high school option it may be the way to go.
Posted 10/20/2013 11:11 AM (GMT 0)
I can't remember who I saw when I was younger but I've had MRIs tgree times onn my knees and then my ankles hands and lumbar spine then on my hands again. None of them have really shown anything worth mentioning. I forgot to mention I'm in the UK so not too sure what a teaching hospital is, sorry. I'm definately gonna lookinto infectious diseases thank you. I really don't want to give up school and not sure my parents would agree since I don't have a diagnosis and they're not too sure my pain is real.
Thank you for your help,
purpleape
Posted 10/20/2013 2:31 PM (GMT 0)
I work in special education here in the US, so I am not sure what is available to you in the UK. We have something called a 504 Plan or Chapter 15. This is for a student who has a physical issue that is affecting there educational success. Its basically a document that states accomodations that must be available to the student. Suggestions might be- copies of notes from teachers, use of a voice recorder, scribe for written work/essays, extended time, decreased written homework, use of laptop, shortened school day. Many different things can be suggested based on the evaluation done by the school, occupational therapist and your personal physician.

Again, not sure what is available in the UK. Do you anything in place now?
Posted 10/20/2013 5:55 PM (GMT 0)
Yeah I have a laptop whenever I feel like it and word process all exams other than maths where i have a scribe. I get 25% extra time and school are really good aabout it I just really struggle to tell them I'm struggling or need help or anything.. I think I'm gonna try and organise a meeting with my favourite teacher tlwhos also SEN coordinator. If you have any other ideas thatd be helpfulbut thank you soo much already. I feel like people finally understand :)
Posted 10/20/2013 6:09 PM (GMT 0)
Hi purple, I know this sounds basic but just to throw it out there did they rule out things like Lupus and rheumatoid arthritis. For Lupus there are no specific blood test that will tell you 100 % but there is a test called an ANA. It is a blood test. Also if you have 4 symptoms out of this special list of 11 symptoms they can diagnose you without a positive blood test.

I can totally sympathize with you. Three different times now I have been very ill and Drs have searched for months and could not find the answer. I searched and search and each of those three times I found what got us the breakthrough to get the dx. My family did not believe it was as bad as I said either. They thought I was lazy. Most of us here have gone through that. I cannot image doing it at your age. But we all here understand and we will support you any way we can. People here are so kind they have even looked things up for me when I could not find the info I needed. We are one big family. Welcome.

Sorry forgot to say you can check out the Lupus, RA and maybe even the Fibromyalgia forum. The first post at the beginning will give you info on symptoms.
Posted 10/21/2013 3:01 PM (GMT 0)
I've been told its not RA and unlikely to be lupus. I've looked into fibromyalgia and may bring it up next time, might also talk about lupus again too. Thank you all so much for trying to help me and I already feel so welcome.
Thank you,
purpleape
Posted 10/23/2013 7:23 PM (GMT 0)
Just thought I'd post again begging for any other suggestions or help. So far fibromyalgia seems most likely but not back to see consultant yet. I'm really struggling right now with stress and cold weather aggravating whatever it is a lot. I've had to completely refuse PE now and have many days where i just can't focus at all. Any ideas on what could keep my focus?
Thanks for all your help,
purpleape
Posted 10/23/2013 8:14 PM (GMT 0)
Sweetie
So sorry you re struggling with these issues.

This forum is a safe place. My signature describes some of my health issues.

I suggest you check out the fibro forum on here.. the top thread is a great place for info about fibro AND how to deal with how others react to you.

Do not know if you do have fibro; sometimes reading about one thing can put you on the track of something else..

Also, research ' invisible disease'

Whatever your diagnosis, pain management can help you with the pain.

Do not give up - if you are not satisfied with an answer, keep asking questions
.. if you feeling isolated, this forum is a great place to just come & read even if you do not have a specific question.

All the best to you
Posted 10/23/2013 8:21 PM (GMT 0)
Just wanted to chime in a bit.

I agree totally with DianeB on this one. ^^Ditto^^ (Everything)

She said a lot in her post. I'll echo the great advice and this is a great place to pitch ideas and thoughts around. Very friendly family, this.



Merrida
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