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Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board

Reflex Sympathetic Dystrophy (RSD) (CRPS) Board Index

Hi, and thanks to all of you for the welcome :)

[B]K_Lana[/B]: IVIG stands for Intravenous Immunoglobulin. It's a product that comes from blood plasma, usually used to treat autoimmune disease. There was a small study done with CRPS patients in the UK (I can post a link to the article - are we allowed to do that here?) after a man with hypogammaglobulinaemia (an AI disease responsive to IVIG) also showed improvement in his chronic pain condition. The study group was very small, but the results are promising. Because I've basically got nothing else left to try, my doctor is working to see if he can access some here for me to try.

[B]Michaels1mom[/B]: Yes, I've had four attempts at IV ketamine. Our protocol here is 5-10 days inpatient at ideally at least 10-15mg/hour. My first was a disaster - I don't do very well at controlling my heart rate, and when the ketamine hit, my HR spiked to 160bpm, I had trouble breathing and the nurses had the crash team at the ready. The second attempt - a couple of years later - dropped my pain from a 9/10 to a 4/10 but only lasted three days and made me so ill I lost 7kg in two weeks from not eating. Tried again when I had a really bad flare a month later and it did nothing. Then in May this year, I had bad cellulitis in my legs and needed a PICC line inserted for antibiotic treatment. The doctor putting it in hit the nerves in my arm and caused a serious flare - and being acute we hoped the ketamine would work. No positive effects, only major side effect - ignored by the nurses. I actually had such a bad time that I ended up making a formal complaint to the hospital.

Approached my condition? The problem is that they didn't. I was first injured in 1999. I had surgery and I had ordinary physio and rehab for my knee injury. When it didn't get better the surgeon decided that I was bunging it on - he told me and my parents quite openly that teenage girls are subject to fits of hysteria and hypochondria. I didn't know what was wrong - just that something was wrong - and I was only a kid.

Once I was diagnosed, all stops were pulled out. It was the orthopaedic surgeon who did my second surgery who made the diagnosis and as soon as he saw what was going on he set things in motion. I didn't even have an initial face-to-face appointment with a PM doctor. My ortho got him on his mobile on a Monday night, I spoke to him over the phone, and was in hospital starting lumbar blocks on the Wednesday.

I've got a pain management doctor (Neurologist/Rehab with an interest in CRPS - also specialises in spasticity & dystonia) GP and physiotherapist, all in different places - though my PM and physio have worked together in the past, and my GP treats my physio's kids so there's a common thread between them. I've never been a formal patient with a PM team - I've had consultations, mainly with their psychs - but I'm really put off by their "all of us or none of us" approach. I spoke to a pain psychiatrist at a well known pain group here a while ago and he openly rubbished my pain doctor, my physio. Told me all about how wonderful their group was and how high their success rate with CRPS patients is (all the while, refusing to actually tell me what their techniques are). I've also got a GI specialist, cardiologist and endocrinologist who deal with the secondary messes the CRPS has thrown up.

My therapy now is a real mixed bag, because everything does a little bit - I'm on a cocktail of oral meds - Oxycontin, and endone for breakthrough pain, Topamax, Mobic, I've got a Spinal Cord Stimulator for my legs, though that's been knocked out at the moment because I broke my back a few weeks ago and the nerve sensitisation from the fractures is running interference. I've got a pump - though that's more to deal with my dystonia than the pain directly (the pump is baclofen/bupivacaine) and I have weekly physio/massage sessions.

The latter helps with controlling my sensitivity issues, helps to ease some of my muscle pain and helps to mobilise some of my joints. Granted my physio knows my CRPS very well, and knows exactly what I can and can't handle, but am I strange in that I find firm but very gentle massage much easier to tolerate than light touch?

[B]Tayden[/B]: Even after the second surgery and the spread within my right leg, it stayed there for nearly three years. Once it started spreading beyond my right leg, it had gone everywhere within 12 months.

Can I ask what meds you're on? It's very rare for CRPS to cause stomach issues in its own right but a lot of medications, especially the opioid ones (Morphine, Oxycodone, etc.) are notorious for causing stomach problems. It's worth talking to your doctor if you're having problems. There are various dietary methods for managing gastroparesis - and medications if necessary.

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