Unknown pain disease?
Looking for help with my condition. After seeing multiple Dr’s the past three years and the last being a neurologist. It’s a mystery as to what is going on. These are the symptoms.
-ice cold feet
-extreme pain in hand and feet.
-stiff fingers
The main auto immune disorders have been ruled out along with peripheral neuropathy also.
I’m just lost trying to figure this out. Currently on Lyrica for the pain. Helps but it just covers up some of the pain.
I compared others illness to mines and look at what they did to get the proper diagnosis.
, it's sad that we have to do that. My son was misdiagnosed as a child and medicated with something that made his behavior worse. When I was looking up a chewable bracelet (because he was getting written up in school for chewing his pencil) I found a book that explained all the symptoms he had and even the ones the doctor could not explain. I contacted the local university because there was no OT in town that would work with children. They tested him in their master's program, and viola, a diagnosis and a treatment plan that was relevant and worked. His doctor - had never heard of the disorder.
Have you found any professional who is open to investigating what you are experiencing? - Warmly, Donna (Team Member)
Keep notes on everything then put it into a calendar book so you can share with your PCP and specialists. Don't be afraid to change doctors if you do not think you are getting the help you need.
, these are great tips! Heavy documentation also helps with insurance and appeals, as well as minor or intermittent symptoms that you might forget about on your next visit. - Warmly, Donna (Team Member)
Sometimes it is useful to know if besides the mentioned symptoms others seemingly unrelated ones are present, e.g. skin, eye,..
Fabry disease considered?
Hi
,
Thank you for adding that those who aren't yet diagnosed might need to consider if there are additional symptoms that they haven't yet thought of as being possibly related, which might help lead to a diagnosis.Gina Miller, Team Member
Have you heard of Raynauds Syndrome? My daughter has this. She gets extremely cold feet and hands, to pain. No amount of covers, hot water helps. I rub them trying to warm and get circulation in them.
Thanks for sharing. I'm sorry that your dear daughter suffers from this.
and
Have you each had Raynaud's ruled out?Gina Miller, Team Member
