I'd like to take a minute to apologize for posting this from my cellphone without proofreading it. I believe that I have fixed all of the topographical errors and missing pieces of information.
My wife has been suffering from unrelenting pain for years. She's seen almost every specialist known to man. She's been called crazy, hypochondriac, lazy, drug seeking, and God knows what else. She's been through a total of over eighteen months of physical therapy. She's had half of a dozen surgeries.
She was on a chronic pain support group describing her symptoms when someone told her (my wife) that she (the friend) had EDS (Ehlers–Danlos syndrome) and my wife's symptoms sounded extremely familiar. My wife and I researched EDS and decided that it was worth looking into from a clinical perspective.
In June, my wife and I had our three-month follow-up appointments with our PCP. He wasn't convinced that she had EDS, but he admitted that it was possible, so he referred her to a genetic specialist in the hopes that, even if it wasn't EDS, he might find an answer to the route of her pain and various other symptoms.
Well, my wife was scheduled to see one of the Pediatric Geneticists at Hershey Medical Center 9/30 at 10:30am. Remember, my wife and I have had quite a few issues with physicians at that hospital, especially regarding pain, opioids, and botched surgery. We didn't want to go there, but we didn't have much of a choice, so we made an exception to our "NEVER go to Hershey" rule. Anyway, we never got the paperwork in the mail, so we decided to get there an hour early.
They took us back right away. We never got a chance to fill out the paperwork, which they promised that they'd bring to the secondary waiting room ASAP. The doctor (geneticist) and the genetic counselor came in. The doctor was old, which worried me because my wife is on significant doses of opioids, many older doctors are extremely opiophobic, and the doctors at this hospital are known for rampant Opiophobia. The doctor took an extremely thorough history and exam. He told the generic counselor that the diagnosis was obvious. Every new exam test and question about her history and family history just reasured him of this apparently obvious diagnosis. He repeatedly told us that should have been diagnosed in early childhood. This diagnosis is the cause of her pain and the stretch marks that were repeatedly blamed on the prednisone. Dr Ladda spent well over an hour talking to us and reassuring us.
Anyway, he gave her an official diagnosis of EDS (Ehlers–Danlos syndrome) Type 1/2.
He proceeded to tell her that ANYTHING that helps her, including opioids and an intrathecal pump should be tried. Be then he proceeded to confirm what we already knew:
* opioids are not that dangerous
* opioids can cause physical dependence
* opioid addiction fear is vastly overblown
* opioids can be extremely effective for pain relief
* tolerance develops
* you have to weigh relief versus side effects (only side effect either of us suffers from is constipation)
* Miralax is great for OIC (opioid induced constipation)
He's recommending that her PCP
* increase her current dose of Duragesic
* refer her for an intrathecal pain pump evaluation
* stop harassing her about her need for pain medications
* order follow-up echocardiograms every 2 years
I know that I had plenty more that I wanted to say, but I can't remember,so I'll post this as-is and if anyone notices anything that I may have forgotten, please comment and/or email me.
Notes: EDS is a genetic disorder, but the geneticist informed us that the blood tests are clinically irrelevant, so the doctor diagnosed solely on examination, a series of physical tests on her joints and skin, patient history, and family history.
There is no direct treatment for EDS, there is no cure. There are lists of things that she can do to limit damage. Other than that, pain control through whatever means necessary (opioids, SCS, IDD/pump, APAP NSAIDs, Lidoderm, etcetera) should be the primary concern.