Hi Carrie, I get awful chest pains. It's from my lungs when the heart acts up so do my lungs.

Hi Sandra, I don't get migrains. I use to have a terrible problem. I have been seeing a chiropractor (activator) he can't use is hands. The activator is a small spring loaded tool he puts it on the area of my spine that needs adjusted. He actually diagnoised my RSD. My regular MD didn't agree with him he went on vacation one day and I saw another doctor in the practice. He had done an internship with Dr. S in Philly and referred me on to see him.

I hope today is a less painful day than yesterday!!!
Take care,
Sherrie

,

for sharing your stories and experiences.

Coffeebean- I totally agree with you here. That's why I've had my Dr do all these tests, I'd prefer to rule all the obvious things out first, then decide if it's RSD after that, rather than assume it's RSD when actually there could be something serious going on. I hope you keep going ok.

Woodsman- Forgive me if I'm totally on the wrong track here, but I don't quite know how to take some of what you said, so I'll respond bit by bit.

No I don't take NSAIDS. I took them for about six months back in 2002 when I had bursitis and shoulder impingement syndrome, but haven't had them since then. I gave myself a set time to be on them then that was it. They don't help with my RSD pain at all and never did, I took them for the bursitis pain. To be honest, I'm surprised a doctor would let you be on them for 23 years.

I've always been reluctant to take opioids, I didn't start on them until about 5 years into my RSD, and then only for a few months in a row so I could build my strength and ROM in my arm back up. I'm on the oxy now because I've thoroughly exhausted the lists of medications that work for us and I get good pain relief from the oxy. I don't take half as much as I need because I prefer to try and deal with the pain in other ways.

I'm not keen on taking medications for my heart, but I have to be sensible. I'm a mum of four young kids, I can't take risks with my health, so if I need a medication to keep my heart beating properly, then that's what I have to do.

Sorry but I'm sure the itching is from oxycontin. I'm allergic/have severe reactions to many medications and that is one of the first symptoms I get when my body starts saying "oh no" to the dosage/medication I'm on. Also, when I had my c/section with my daughter, I went on 20mg endones for a couple of days and my face itched like crazy each time, until the endone wore off. So for me to get the itching now is definitely linked to the oxycontin and I'm guessing my body is starting to ark up about it. I've been on it for about six months now.

I always weigh up the pros and cons of all the medications I try. Sometimes you can put up with the side effects because of the benefits of the medication, other times you can't. So far the benefits of oxy have far outweighed the side effects for me, but now that's starting to shift, so I am reassessing whether I should stay on this or not. The downside is there are no other medications that work for my pain if I do have to come off the oxy. But I'm hoping I can get some relief from another ketamine infusion. I've had 5 now and have mostly done well with them so I'll go down that path next.

I totally agree with you about physical therapy, I work my ding off everyday in that area. I've had my RSD for almost nine years now, since I was 23 so most of my adult life, and I'm very proud of the fact I've kept myself out of a wheelchair all this time. For three years I had no use of my arm or hand and no one and nothing could touch me, but I put everything into physio and massage and now I have great use of my arm and hand. If I hadn't have done that, then when my RSD spread to my leg in 2005, I would have needed a wheelchair, as I wouldn't have managed with the crutches. So you're not telling me anything I don't know!

I accepted it as part of my life a long time ago. I don't like it but I've accepted it and have definitely been able to make the most of my life despite it, such as having two more children, doing two 3-year university courses from home since 2003 and going on many holidays and trips with my family, regardless of what my RSD would prefer me to do. I don't suffer at all and I am very blessed and love my life.

Yeah, it's scary having heart problems. Because I don't want anything to happen to me. My husband and kids would like me to hang around a bit longer and I don't want them to worry that something bad will happen. But having these heart symptoms are part and parcel with the RSD, then so be it. As with everything that has been thrown at me by my rsd in the past 9 years, I'll just have to work around it.

Thanks for your comments. I hope this has helped explain my situation a little better.

Kate