Posted 9/17/2011 8:22 AM (GMT -6)
Sorry that I've not been posting much to everyone. Know that I do read everyone's posts and I am thinking of all of you.
As things stand at the moment, I'm waiting on an appointment with an endocrinology unit who specialise in managing osteoporosis. We don't really know why it's developed - so many possible factors, so really need a specialist on board to sort it out. Apparently in rare cases Topamax can cause osteopenia/osteoporosis, I suffered malnutrition for so long with my gastroparesis that I stopped having periods for a long time, I can't exercise sufficiently to maintain bone mass, I'm severely vitamin D deficient despite taking supplements...
I'm also really concerned about being on bisphosphonates, so that is going to be another challenge for the endos to address for me. I've had wisdom tooth troubles for about a year, was told six months ago that they were impacted and needed removing. Still haven't had it done because of everything else that has gone on, and the WT pain might reach a 3-4/10 at its very worst. Dental extractions/surgery isn't good once you're taking these meds, because there's a very small risk of a very nasty side effect called oral osteonecrosis of the jaw - where the bone becomes exposed, can start breaking down. I had a very minor episode of ONJ a couple of years ago.
I'm scared. I'm more than scared. I'm in more pain than I've ever been in. On top of the CRPS, my back is causing terrible pain. Worse is the referred pain it's sending through my ribs and chest. It hurts to breathe; I can't even wear a bra or a close-fitting shirt because the skin over my chest and back is so sensitive.
Even the minor stuff is making me want to cry at the moment. Something - I'm actually wondering if it's the Topamax - has caused me to break out in acne. I've never had pimples, never. Even in my teens. Mum went to the chemist for me and brought back the cream they recommended. A couple of minutes after I put it on, my face started to itch. It can cause some minor itching, so I waited a moment. Then it started to burn and my cheeks and nose started to go red and swell. Washed it off, but I now have a swollen, itchy face and lips. Not happy!
CRPS since 1999, diagnosed in 2005 and since spread to full body, spasms, dystonia & contractures, gastroparesis, orthostatic hypotension,bradycardia/tachycardia, bone spurs, bursitis, carpal tunnel syndrome, osteoporosis, osteopenia.
On Oxycontin/Endone, Topamax, Mobic, Magnesium, Florinef, Midodrine, Somac, Cipramil. Have SCS, intrathecal pump with baclofen & bupivacaine and doing physio