Thread: Rsd vs raynauds
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Old 02-11-2012, 05:50 PM
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catra121 catra121 is offline
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Join Date: Jan 2010
Location: Illinois
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catra121 catra121 is offline
Senior Member
catra121's Avatar
 
Join Date: Jan 2010
Location: Illinois
Posts: 1,785
15 yr Member
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I'm sorry you have so many different things going on...that's got to make things that much harder. I know that I try to make sure that when new things happen that I don't automatically assume they are the RSD because there are lots of things that RSD CAN cause but that doesn't mean that it IS causing them. We all need to be careful and make sure that we don't miss some other health issue or ignore other possible treatments just because we assume RSD is the culprit.

As far as treatment options...blocks are usually one of the most common starting points after diagnosis. There's also a variety of different meds that are used to help control different symptoms. Ketamine is another big one, though it is fairly expensive...but effective for many many people. Spinal Stimulators are another treatment option that many people have gone for (though I personally will not ever go this route based on my own research and feeling about it...but many people have found success with it to varying degrees). TDCS is a relatively newer option for treating chronic pain and RSD which is the least invasive option (I'll be starting this soon and hope it works). TENS units and heat therapies can also be really helpful tools in controlling the pain.

All of the above should be done in conjunction with physical therapy. The items mentioned above are all things that can help manage symptoms and pain but without the physical therapy RSD can continue to get worse. Immobilization and protecting of the RSD areas are some of the worst things you can do...RSD is a use it or lose it sort of thing...but you need to get the pain and other symptoms under control so that you CAN do the therapy.

I understand your concerns about doing reseach online but RSD is so widely misunderstood by even those in the medical field that you really should use the internet (again...my opinion only...not trying to tell you what to do because that is for each person to decide on their own) as a tool to educate yourself about it. I have had doctors tell me that RSD doesn't spread, that it can ONLY be in a hand or foot, and who are completely unfamiliar with the other symptoms beyond just the pain that can be caused by RSD. If I didn't know better then I would have taken these doctors at their word and would probably be in a mental institution thinking I had totally lost my mind, stuck in a wheel chair and unable to stand or walk at all instead of walking around and finally getting to the point where I can return to work. I learned in my experience that I cannot rely on doctors to fix me and make me better...I have to take responsibility for my own health and figure out what is in my best interest to get me where I need to be. My doctors are there to HELP me get there but it really is my responsibility to do what I have to so that I can get better.

About 10 months ago my doctor (who was literally the one who delivered me and had been my doctor my entire life) told me that I would likely be stuck in a wheelchair and just have to suffer in pain for the rest of my life. Now...I could have listened to that and given up...but instead I decided to change doctors and take control. My mom was not happy, my lawyer was not happy, but I felt that I needed to do this because my life was hanging in the balance. Not that I would die from RSD...but it would have essentially been the same as dying because I would have given up on the possibility of me having a normal life...RSD would have beaten me and I don't think I could have recovered from that. I decided to put my health above any concerns that I might offend a doctor and by taking control like I did I was able to get my life back. Don't mistake what I'm saying though...I don't tell the doctors what to do. Instead I come in with the idea that this is a partnership. Their JOB is to help me achieve my goals with regards to my health and I want a doctor who will listen to my concerns, consider the different ideas that I bring to them, and work WITH me to get through this RSD thing and any other health issues that may come up along the way. Luckily...I found a wonderful and compassionate doctor who doesn't pressure me to go through expensive procedures that I don't want or try to make me take the medications that she "prefers" to use (I've had doctors in the past who have done both)...instead she has my best interest as the focus.

Sorry to go on...and I apologize if anything I said comes off the wrong way as I mean no disrespect to anyone who has a different opinion than mine. I just feel very passionate about all of this because I don't want anyone to suffer through the same bad experiences I had being bounce around from one doctor to another all the while getting worse and worse. I feel like if I had stood up for myself in the beginning that I would have avoided much pain and frustration...how much time did I waste with doctors who didn't really care whether I got better or not? But...the past is in the past and my experiences have only made me stronger. This journey has really taught me a lot about life and what's important. If any of my experiences can help anyone else then I feel it's important to share them...I hope that they can.

But regardless...I really do pray that you get some relief from this pain and suffering and that you do not have to go through the things that I have or that other members here have had to go through. I pray that the block helps take away your pain. Good luck.
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