Michael, thanks so much to you - and to everyone else here. My struggles are not letting up...if anything, I think that they are breeding :(
I saw the endocrinologist on Thursday about
my osteoporosis, and I'm so glad that my GP warned me of his reputation for being difficult. I would have been completely helpless had I not been prepared - it was like facing a brick wall - nothing on the man's face, he said almost nothing, told me almost nothing, just asked a couple of questions. Thank goodness I have solid medical knowledge and already knew what questions I needed to ask. A humorous moment though (from my perspective) - I HATE with a passion doctors who don't introduce themselves with their first name, so when he called me into the room and just said "I'm Professor ******" (not even 'hello', or an apology for the 1 1/2 hour delay), I couldn't resist the urge to reply with "Good to meet you - I'm Doctor B***"
Think that put him off a bit... even the receptionist asked afterward what I'd done to him, saying usually it was the patients who looked flabbergasted, rather than him!
There are a few difficulties though - I've had a condition in the past called Osteonecrosis of the Jaw (ONJ), which is where the gum starts to ulcerate and the bone undeneath starts to break down. Mine was only very minor and did heal over time, but it's a potential risk of bisphosphonate treatment (the type of drugs used to treat osteoporosis). It's very low risk, but increased by dental surgery - I have problem wisdom teeth that I've been putting off having removed for almost a year, because my PM feels there is a 'slight' risk of CRPS spreading with their removal, but doesn't know what we can do to reduce the risk. BUT, I have been told by the Endo Dr. that I will have to have them removed before I can start any treatment for the osteoporosis. I just can't face more surgery, even something as minor as this. My body doesn't heal - it took three months for my SCS surgery wounds to heal. My last IV site took SIX WEEKS to heal. I split my lip a fortnight ago and ended up with a sore in the corner of my mouth. I now have a big wound there with almost no healing.
My back won't heal either - I've lost 4cm in height and I'm developing kyphosis. It seems like I have nerve compression going on - my worst fractures are at T7/T8 and T12 (all >50% compression) and I have an enormous amount of extra nerve pain at those areas. When I just had the mild CRPS in one leg and could still walk okay, I used to rehab donkeys and mules, and got put up a fence by a wild Jack I had taken on board. He cracked three of my ribs and that was nothing compared to the amount of pain I'm getting in my ribs and chest from these vertebral fractures. I've had to turn my SCS off too - my whole thoracolumbar area is super sensitised and even though my tech is confident that the SCS leads have not moved or been damaged in any way, the sensitisation of the tissues means that using the SCS, no matter how we program it - he's spent about
8 hours with me now over a few sessions in the last 6 weeks or so - it feels like my whole back is being fried. My GP and I have discussed a brace to stabilise things but neither of us can see anyway that I'd tolerate it - I can't even wear a bra because it burns. It makes me horribly suspicious too that there's more to this than just nerve involvement from the fractures - I think the CRPS is getting in there too.
And it never rains but it pours as they say. Another reason that my pain is so out of control is that I've had to slash my Oxycontin from 100mg a day back to 60mg because of my gastroparesis getting so bad again. I've also had gastritis in the past, and wondering if that's playing a role again too. I'm barely keeping food down and I've lost 5kg (11lb) in just a little over 2 weeks. I had a few zofran (ondansetron) wafers but I've run out. Only have a few tablets left and they're doing nothing because I can't keep them down long enough for them to work. Doubt I'll be able to get any more wafers either, unless I end up in hospital again, which is how I got the last lot.
Forgive the rant, but it's almost criminal... I can't take metaclopramide because it makes me so dizzy I can't get up and affects my eyesight badly. Prochlorperazine tablets don't work, though oddly enough, injection does. Tricyclics (sometimes used for gastroparesis) give me major anxiety problems. I can't take domperidone because it throws me into a full-blown lactation cycle - and it also prolongs the QT interval. I can't get approval for cisapride because I have a prolonged QT interval. Ondansetron is the only medication that helps - and I'm not eligible for it as an outpatient because it's only approved for chemotherapy patients. If on the off chance my GI doctor can get approval for me to get it under the TGA special access scheme, it costs around $8 PER TABLET, and when I need them, I need three tablets a day :(
I'm seeing my PM in a couple of weeks. I've sent him a couple of lengthy emails, let him know what's going on. I've told him that we need to sit down and have a discussion about
a long term management plan, and also a 'crisis plan' so that I have a way to manage acute flares. At the moment I have nothing. I have BT meds, but with the gastroparesis having flared so badly, all that happens when I take oral meds - especially anything that it giving me a stronger dose of opiate in one hit as the BT meds do, just makes me vomit the tablets up again. Daytime flares can be managed because I can see my GP and if it's really needed be given injectible meds for both nausea and pain relief. My problem is that the worst time for flares for me is a/ the middle of the night and b/ weekends when our clinic is closed. I have a very good relationship with my PM -and an even better one with my GP. Both have always been more than happy to let me ask about
trying things - I'm thinking I'm going to ask if I can have an anti-nausea med on hand that I can inject if need be, maybe the same for pain meds. It's not really somewhere I want to go, but the alternative for those sorts of flares is hospital. Every time I go into hospital with a flare, I get sick. I pick up colds, I get secondary infections. They can't manage my dietary needs - about
the only food I can tolerate when my stomach flares is porridge and I need it regularly and in tiny volumes. So I lose weight
To top it all off, I was reminded of a TV program I did a couple of years ago. Even though I'm so very proud of it and what I achieved with it, it's reminded me of where I was last time things were really bad - and I'm terrified that this time is going to be worse still. Basically, I'm at the end of my tether. I feel like my world is collapsing and I don't know what to do or where to turn :(
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, oste
On Oxycontin/Endone, Topamax, Mobic, Magnesium, Florinef, Midodrine, Somac, Cipramil. Have SCS, intrathecal pump with baclofen & bupivacaine and doing physio