My name is Katie and I have been dealing with LPHS for 3 years now. I have been to several large hospitals in the central Pennsylvania area where most doctors seem sympathetic at first and then dismiss me after they realize they have no answers. I don’t understand why none of them ever research it or look into doing treatment options even if they never have before. Most of these hospitals are teaching hospitals and you would think they would grab onto a new disease to research, but apparently not.
I am now 10 weeks pregnant and the pain has been increasingly worse sine I’ve been pregnant. But now doctors are even more reluctant to prescribe me medications for pain and even when they do it is a lower dose or less pills. I want nothing more than a healthy baby and don’t want to risk hurting it with meds but at the same time I can’t function in this much pain! I have to take days off of work just to sit on the couch which doesn’t even help all the time. I’m still in severe pain when I stay still or sleep anymore!
Has anyone else gone through pregnancy with this syndrome before? And what were your experiences if so? I am literally dying to find someone to help me and am at the end of my patience trying to figure this out. Please post or email me if you have any advice. Thanks and good luck to all who have this nightmare!
Katie
Hi Katie, If you join the lphs support page (there are 5 lphs Facebook pages!) you will come across loads of us with lphs & those who have been through pregnancy. see also http://www.livingwithlphs.co.uk
Katie,
Have you been to a pain clinic? I ask because someone should recommend you for an intrathecal pain pump. It will give you opiod medications that will not effect your baby because they go straight to your brain and not through your digestive tract.
Another thing you might try is to do something that requires you to focus so intently that it takes your mind off the pain. I have LPHS, disk disease, insomnia, the whole nine yards. I recently began writing and taking walks and have found both decrease my pain level. Not by a lot, but when I’m not focusing on it my pain level does go down a little.
If you’re interested, I am working on compiling an ebook BY chronic pain patients FOR chronic pain patients. The concept is that to have people tell inspirational stories about how they were able to rediscover their life by finding a distraction that they’re passionate about. With a baby on the way, you have a lot on your plate and unique challenges that make other pain patients problems pale in comparison. Would you be interested in contributing a chapter for my book? The writing might take your mind off the pain.
If you’re interested, please email me at drew_bufalini@yahoo.com. If not, I really hope things work out for you and if there’s anything I can ever do to help, please let me know.