What People Are Saying...
These are un-edited copies of some of the feedback that Kids In Pain have recieved throughout the past few weeks.
We share this information with you in hope that it will help you realise that you aren't alone and that there are many other young people out there that know what you are going through!
Many of the people that have wrote to us have become members of Kids In Pains forum and we hope that you will come and join them and get the help and support you need!
A big thank you to everyone that has wrote to us - we always look forward to recieving your feedback and it helps us know what we can do to make the site more useful so please, keep it coming!!
I am looking for a physician that treats RSD. My 15 year old daughter has it in her ankle and was diagnosed 4 years ago. Recently her pain has gotten a lot worse and I wanted to look at our options. Please advise if you know of a good doctor around the Kentucky region.
thanks, Teresa Clark
Thanks for starting this site!! As a child I was in terrible pain however I thought that it was something everyelse felt... Tamara Jones Adams
This is such a brilliant site, thank you SO much for starting this! Morgan Misko.
It's one thing for us adults to be in the pain we are in due to RSD, but kids...it breaks my heart. I would take any childs pain for them.. God love them. Kathy Lussier.
Hey, I have just turned 16 and had a serious back injury 3 years ago which I am still suffering with today. I have HMS (Hypermobility Syndrome) and unfortunately did my pelvis in and tore the sacroiliac joint and broke my coccyx. It doesnt sound too bad when I write it down, but my god it took me 3 years to find a pelvic specialist who had a some-what idea of what to do with me and my injury! I have pain all the time, it sucks but I control it with Codeine, Morphine and Diazepam which i need to take almost daily just to go out to the shops.
Im sorry about the essay above, but its so hard to actually talk to people about what im going through with out them going "why dont you just have surgery and stop complaining!"
I'm so grateful that my supporting mum found your website and also found the group on Facebook, I couldn't believe that there was support for people like little old me hehe!
Anyhow, enough boring you, hope everyone else here is doing what they can to feel a bit better =) Thank you, Cariad Burgess x
I think the site is brilliant, I wish i'd have found something like this site when i was first diagnosed, it would have helped me no end. Angie xx
HI,
THE LAST 21 MONTHS HAS BEEN A DISASTER FOR ME, MOST OF IT IS DUE TO CLINICAL NEGLIGENCE BOTH HOSPITALS AND G.P.'S
NOW AS A RESULT OF IT I HAVE C.R.P.S. IN THE LEFT ANKLE AND LYMPHOEDEMA, PAIN AND A INVERTED FOOT. I HAVE HAD THE PHYSIO AND PAIN MANAGEMENT BUT NEITHER HAVE WORKED, TO THE PAIN MANAGEMENT I HAVE HAD REACTIONS ETC.
I WENT TO BATH FOR AN ASSESSMENT WITH MY MUM, I AM NOT DEPRESSED AS THEY SEEM TO FEEL THAT MOST CASES THE CHILDREN BECOME DEPRESSED.
I GO TO HYDRO-THERAPY AND THE PHYSIO AND AT THE MOMENT I GO FOR SLEEP-OVERS WITH MY FRIENDS ETC.
I AM SUPPOSED TO BE GOING TO SHEFFIELD IN SEPTEMBER, I AM SEEING THE ORTHOPOD TOMORROW TO SEE IF THEY CAN FIND ME SOMETHING TO WEAR ON MY FOOT AS THE USELESS KERAPED BOOT HAS HOLES IN IT.
IS THERE SOMETHING THAT I AM MISSING THAT I SHOULD BE DOING?
LUV LAUREN
Would be nice to speak to parent of a sufferer of CRPS. My daughter Katie has had this for 6 months. Wold like to speak about different treatments that have been tried. My daughter was diagnosed very early on when the symtems started, but she has been offered very little treatment. Claire
Hi, I'm the mother of two young people with RSD, a daughter of almost 21, and a son of 19. Both have suffered this condition since childhood. I used to be a member and moderator of SKIP (Supporting Kids in Pain). Today I met a young lady with athiritis, she is 11 years old and very unsure of the future etc. I suddenly realised I might still have something to offer those who are on the first steps of the path. We took part in the Bath Pain Management Programme, have completed the nightmare of educataion and exams, and are on the first steps towards employment. Neither of my youngsters are pain free, nor expect to be, but they are leading quality lives, and I beleive our story can bring others hope and would like to join your group. Thanks Verena.
Hi!
I just wanted to let you know of a new virtual facebook like community for those with fibromyalgia and CRPS. Videos, Photos, Journals....
www.crps.physiciansforpatients.com
www.fibromyalgia.physiciansforpatients.com
You can also form your own communities within the site. I hope you will consider starting a kids in pain community. I think it would be great for people!! This way it can be your own community. Please consider sending out a group email alert to everyone.
Also, everyone can ask a doctor any questions (free).
They can simply login, select the questions tab, and ask away!
We are a group of doctors dedicated to helping people online in a way to help with the accessibility of doctors. The idea is to give a resource to people that need alternative opinions and information. There are a lot of people that have limited access to health care (have to wait to long to be able to get in to see the doctor, no specialist in their area). This way it is easier for a smaller number of physicians to help a larger number of people.
Dr. Colantonio is the doctor. He is board certified in Pain Medicine and Anesthesiology (so he’s up to par on his nerve blocks). He trained at Duke University and the Oregon Health and Science University.
Dr. Vallance is the Fibromyalgia doctor and trained at the University of Michigan. His specialty is Rheumatology.
We have limited resources and really need help spreading the word and i'm sure the site would help many young people also!
Thx!
Dr. K