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Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board

Reflex Sympathetic Dystrophy (RSD) (CRPS) Board Index

Hi Everyone~

I'm alarmed and wanted to share my concerns with you....I'm an anxious wreck here at work and can't believe I came to work tonight instead of staying home with's why....

Joey had the appt today with the Director of the Pain Center at a Big Boston Hospital, along with a few underlings (Teaching Hospital for Harvard Med). Unfortunately I was not able to be in the appt with Joey because of the timing I had to drop him off early, drive our 6 yr old to school then go back, and by the time I got to the Pain Center they were just finishing his appt...but I did meet one of the younger Drs. who came out to explain the new Meds and Treatment plan for now... [img][/img]

The big thing is that they prescribed Fentanyl patches for the pain, and still with the Dilaudid for breakthrough pain...and I'm really worried about the Fentanyl!! Anyone out there with Fentanyl stories for me??? He put the first one on at 12:00, and the info said the first time could take up to 24 hrs to feel the full he also took 2 Dilaudids then because he was in so much pain. I was VERY nervous, but I actually (STUPIDLY????) came to work tonight because he was insisting he was fine....and I ordered him to call me with frequent updates. :nono:

He was fine until around 7:30ish when he said he was getting pretty woozy and he got the girls to go to bed with him watching TV and they thankfully fell asleep by 8:00 (Which NEVER happens!) He called me back to tell me he felt much better with them sleeping and him resting, and that he'd be falling asleep soon, and for me not to worry..... :eek:

He also got a Clonidine patch, which I also don't quite understand the point says it's for High Blood Pressure, but the Dr said it would directly help his ankle, even though he doesn't need to actually stick it ON his it supposed to be dilating the blood vessels or something and helping the blood flow to the area? [img][/img]

He kept him on the 2700 mg of Neurontin, said it was totally fine that we stopped the Elavil, that lots of people hate it. He's also okay with the Prozac and Valium, although they won't actually give the prescriptions for them at the Pain Center because they're not directly for the pain...he must go to his Primary Care, or I think he should get a referral to a Psych Dr to manage the emotional depression and anxiety aspect of this mess.

He actually expects to be going to work tomorrow, he doesn't want to call in sick for the 3rd day this week..actually he was sick Friday too...he's afraid they're going to lose patience quickly and that he might lose his job...especially since he's going to be taking days off for blocks and Physical Therapy....

Which brings me to the last thing the Dr prescribed...for us to set up a PT appt wherever we want, and I've found one at a ritzy health club near us that does the aqua therapy too, which sounds like a good idea to me??? I put in a call today to interrogate them about being familiar with RSD?? But the Secretary wasn't sure and put me through to an Assistant Director's voicemail where I left a detailed message but he hasn't called back.

When we make the PT appt for an "Evaluation and Aggressive PT", we are then supposed to call the Pain Clinic and make an appt for that morning to get some kind of Epidural Block, instead of the Sympathetic Lumbar Block he got before (??? not clear on this) After that session, they will evaluate how he does and start scheduling the weekly blocks I guess as long as they feel this one does something....

So I guess that's it for now....I'm just worried about this Fentanyl...and the Dilaudid for breakthrough pain....they gave him 180!! I took them to hide because I don't want him to overdo them, which he is more likely to do when there is a huge bottle of them sitting around! [img][/img]

Don't worry....If he INSISTS on trying to go to work in the morning, I will drive him and pick him up, and I'd expect he will not make it through the morning since this is so new.....

Thanks for listening everyone! I'm not as alarmed as I was when I started this...I think they're all safe sleeping, I'll check on him the minute I get home! [img][/img]

~Ange~ [img][/img]

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