Update…

Sterling has been diagnosed for going on 2 years now and we have tried several treatments.  Many others with this disease has asked what we have tried thus far.  We have currently fired many doctors and pain clinics.  It is hard to find a doctor that has even heard of CRPS.  I always bring in my loads of research asking them to read it and have yet to have one even be nice about it.   We have had to take action on our own part and try and work with what we have, so as for now he goes to  University of Utah pain clinic with Dr. Bokat so far she seems to be open to some treatments at least more than others and understands Sterling not being on pain meds.  He was put on them as soon as he was diagnosed and in my research I found that they only activate the Gia cells we are trying to calm in his system, so we made the decision to get off of them, all pains meds really did for Sterling is give him all side effects and were only dulling the pain for maybe 30 minutes by that I mean just making him loopy pain was never gone!  Although I do not discredited anyone that has CRPS and is on pain medications I understand that when in that kind of horrific pain there really is nothing else you can do, it just happens the side affects for Sterling were creating more problems for him.  Here is a list of what we have tried so far.

• Several nerve blocks, spine, legs, foot, neck  (made worse)
• Pain medications
• Complete bed rest (made much worse!)
• Physical Therapy
• Lidocane patches
• Lidocane infusions
• several Chiropractors
• Calmare treatments
• pain lotions and creams
• 4 week juice diet & Colonics (this seemed to really help everything else in his body heal expect CRPS)
• several Homeopathic doctors such as foot readers, eye readers, nano start machine etc. (seemed to help him the most)
• FSM machine inconjuction to having neck and back adjusted 2 to 3 times weekly.

So far we have yet to find remission, yes there are many days just looking at Sterling you would never know he had this horrific painful disease, but reality is he is just adjusting to his new normal…living in pain everyday.  When the flares come he can barley function and is miserable to the point he cannot get out of bed.  I thought we had seen the depths of HELL, but nope I was wrong he recently has had full body flares, now I know why they call this the suicide disease.  I have been watching my husband literally go through pain I can’t write about its hard to describe.  He woke up and couldn’t walk on his legs, he would physically cry when he had to go to bathroom because that meant he had to move. I was able to help him into epsom salt bath and then he could not physically get out.  It took us an hour to get him out of tub.  He will curl up in ball and just cry out in pain because not only does his body on the outside feel on fire so does the inside of his stomach and organs.  Sleep what is that all he does is cry out in pain until his body finally gives up and crashes even at that he is still crying in his sleep.  At this point I wanted to call 911 and then quickly realized I could not because they wouldn’t know what to do with him and possibly worsen his condition.  I have several people ask me what they can do I know they feel helpless because as his wife so do I.  We can love and pray for them to get through the really bad days and for doctors to learn more about CRPS so we can get some support from the medical field and hopefully find a CURE!   We are currently looking at neridronate infusions in Italy (we need bone scans and MRI) I am currently trying to find a doctor that will do those tests for us, next there is a chiropractor in Arkansas that wrote a book on CRPS (Putting out the FIRE by Dr. Katina) she has helped some find remission, her treatments take at least 10 weeks, next is Ketamine infusions in florida with Dr. Hannah these treatments are around 2 to 4 weeks long and are not permanent you have to travel back and forth for boosters. Ketamine changes the make-up in brain so much that if we do these treatments then the doctor in Arkansas cannot really help us, she has had little success with past ketamine patients.  All of this being said not one of these treatments are a guarantee to work at this point we have spent nearly 30,000 in our quest to find relief.  I know all the stresses that have been placed on Sterlings mind only make matters worse. As for now we take one day at a time and hope friends and family will understand his absence when he’s in these terrible flares.

For many of you with CRPS please do not give up your family and friends love you, they feel helpless at times but know that you are loved and in their prayers.