LPHS….What now?
After reading many of the stories on this site, I have come to realize the one thing everyone has in common is the fact that they are alone in how they feel. I have been recently diagnosed with LPHS, my 16 year old daughter is in testing for conformation of this condition also. I relate to her feelings, and though it may seem a blessing to have someone around who understand, it is really a curse to see my daughter falling to the same fate as I. She is just getting started in life, and has so much ahead of her. Treatment options are also different for a child. Narcotic pain meds may work, but further damage the body, and may become addicting. Also not prescribed to a minor child here. Marijuana is an option, but not at 16. How is she to live with this? What can I do for her? Anyone have suggestions?
I can be reached at ivyg09@yahoo.com
Well barbaric it may be. I have the same condition, and I do not take narcotic meds either. We suffer together. Yoga is a little helpful.A 16 year old addict would be tragic, and from what I hear, most people are very unsatisfied with the pain pills which leave people still fighting pain anyway, so barbaric as it may be, my daughter will fight one demon, pain….which has many other options than to treat with a narcotic.
Narcotic pain meds do NOT cause further damage to the body. Im not sure where you live, but refusing your daughter effective pain relief because she is 16 is barbaric.
I have had lphs for going on 20 years had to fight doctors just to listen to me
. Relaxation does work and I will never forget a pain specialist say ” if
you where going through one of your worse days of pain and someone
came running into your house to say your son just got ran over” do you think
you would feel your pain or?? Does your brain switch ?? And you
feel no pain because your mind is on something more important.
I agree that if we can learn to tap into that way of thinking it does help.
On another note- I had the auto transplant done 14 years ago
and even though after about 3 years I had recurrence of some
pain- I would say it was a success as a whole
I am disapointed that there has been no further medical improvement
or understanding from doctors since my auto transplant as it can take
away someones life just by the pain alone .
I tried everything – the meditation and relaxation
helped but along side drugs- I wonder sometimes
if hypnotherapy would have helped more