Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS)

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Old 10-18-2013, 01:45 PM #1
mommystime2 mommystime2 is offline
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mommystime2 mommystime2 is offline
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The journey of crps, we all hate it, we want it gone, and never to we get used to. I'm so sorry you are here. Pain sucks, crps is worse. Ah today is a good day for me I hope you read and research everything. Please write in private if you want. Gl on this horrible journey
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"Thanks for this!" says:
MELwith RSD (10-19-2013), RSD ME (10-18-2013)
Old 10-18-2013, 04:50 PM #2
Allanira Allanira is offline
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Allanira Allanira is offline
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Sweetheart, I was 24 when I got this stupid disorder. I went almost 10 yrs with out a diagnosis except that it was all in my head. All because I ran to my tent in Iraq and "strained" my knee. We all go through the "No one understands what I'm going through" phase. Its natural. I do live by the old "Use it or lose it" mantra. We have to. I have a 2 yr old and another on the way that I have to chase down. I go whole days that I want to hide under the bed and cry. We are human of course we don't want to hurt all the time. You will come to terms with it and figure out how to deal with it. DO NOT let anyone or yourself tell you its all in your head. Its not. The people on this forum know. If we didn't know what it felt like to wake up or even still be awake and hurting we wouldn't be here. Don't feel alone. It hurts like the dickens. Research, research, research. That's the biggest advice I can give you. I haven't done much research until I was diagnosed. After almost 10 yrs I have figured out that I can't stand for more than 10 min without sitting down and elevating my leg or I will pay for it later. Does it stop me from standing at the sink to make dinner? No I stand for 10 then go sit down with my leg up. I have also figured out that walking without my cane outside the house is a very bad idea. I loose my balance really easy and look like a drunk woman. Stay proactive with your doctors. See about going into Occupational Therapy instead of Physical Therapy. If you do physical therapy make sure they are doing it for chronic not acute pain. Also warm Epsom salt soaks for your arm. I know it sounds weird but it does help some people. I have done it for my leg and it did take a little bit away. I am off all treatments while I'm pregnant so I do what I need to function and look after my son. Also I wasn't on any treatment for a very long time and everyone wondered why I acted like I was in pain. Well I really was and am still in pain. I was on Neurontin and Norco. It barely took the edge off the pain. Just enough to where I could do what I had to but still hurt. Also DO NOT use ice. Use heat or moist heat. Try to keep as positive as you can. Don't let this get to you. Keep being yourself. keep smiling even when it hurts. Find something to laugh about everyday. The old cliché of "laughter is the best medicine" is an old cliché for a reason. It does help. Keep distracted as much as you can also. If you don't think about it then the pain is a little less. I have learned some of these tricks on here and some have been me learning them.
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