Leanne created the topic: Arthrgryposis multiplex congenita
a little known condition with a small number of people diagnosed with this condition and the documented management of chronic pain as I get older, results in a lot of trial and error. Meds vs therapy. When you have to work, getting that life work balance with pain management is hard. Has anyone out there heard of a pain management clinic that has seen these cases? I've not visited a pain clinic yet but I feel this is where I am destined.
Johnno replied the topic: Arthrgryposis multiplex congenita
Not knowing what you have as the wording is awesome , I would dearly know who thinks up these names.
I did a Google search obviously Google isn't the b all and end all but it did give me a small window to understand what you are going through I did copy the below and didn't know if this would help.
Armed with some of this info I can only suggest you ask your doctor to refer you to a orthopaedic surgeon and/ or an Occupational Therapist .
Hope this helps
Children with arthogryposis may be seen by a team of specialists. The plastic surgery team specializes in evaluating the child's arm and hand. The best treatment for joint stiffness is a program of stretching and splinting. It is important that parents begin stretching the child's stiff joints early on. This will help them gain the most movement in the joints. The range of motion (ROM) of the child's joints needs to be checked regularly and maintained with stretches and/or splints through out childhood. Surgery may be recommended to loosen the tissues and help to straighten bent joints. Other operations may be helpful to stabilize joints to improve the function of the hand. The Occupational Therapist and Plastic Surgeon will discuss with you the best options for your child. (See the image to the right of: Splinting for arthrogryposis)
as long as I wake up alive I'm happy
Because it could be worse