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 12-12-2013, 02:57 AM #21
crpsage16:( crpsage16:( is offline
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Hi lottie, just saw your message. CRPS is kindof limiting my life, but im trying my best to do the normal things I used too. Not the same because I'm home schooled now too, but still keep in contact with many .
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Old 12-13-2013, 11:43 PM #22
Lottie Lottie is offline
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Keep reaching out to your friends. It is difficult for them to know what is best for you. Often people assume you want to be left alone when you are sick and they don't see that illness is a lonely place to be. Let them know what you need. Your true friends will respond with caring. Keep swimming!!
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Old 12-14-2013, 12:43 AM #23
murgir murgir is offline
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Quote:
Originally Posted by crpsage16:( View Post
Hi, I'm Blake. I joined this forum after finding it 9 months into my journey. Here's my journey if anyone's interested:
High school
I played on the tennis team in high school. I very much enjoyed it my first and second year of high school. I had made varsity my freshman year! Sophmore year comes, and everything is going great. Good grades, good friends, good tennis. In tennis, we would have weight lifting three times a week. I had been doing fine, until this one day occurred. I was lifting a little to much weight, and something in my mid-right back snapped. It felt like my insides had ruptured, or a ligament had exploded right then and there. I could not walk for around one week, and then I was able to walk. The pain at first, was unbearable.

Doctors
For several months, we went to several doctors who did every test in the book. All the tests came with standard results; Torn ligament in back, disintegrating discs, and answers like " It will heal soon, just give it time, and rest ". After all of the doctors appointments, I was given many medicines like tramadol, gabapentin, etc. These medicines were NOT helping. As we switched doctors day by day, my pain was getting worse. I could not deal anymore. Nurses office every day, dealing with hell in school, and the worst part; No one understands. No one understands anything about your pain. Even I did not understand what was going on with me.
The injury SHOULD'VE healed! I thought to myself, it's getting worse, I have cancer. I actually did think I had cancer, even after all of the tests were done on me, and still to this day I think I have an underlying medical condition that's making my pain even worse; (Because of the intensity of the pain). To carry on, after school ended, and I had already dealt with spinal blocks, them putting a huge needle in my back whilst I was asleep, and the constant pain and no understanding of others OR doctors OR myself (I didn't understand what was going on with me, again the thoughts of cancer) OR if I was going to die or not.

Not to mention, having to explain to all of my friends (which didn't understand anything that I was trying to explain, because I didn't know what was wrong with me either) that I had this TERRIBLE back pain, from an injury in tennis. I got sarcastic answers like, he's faking it, or, I'm so sorry, but I really don't know why you're in so much pain right now, you should be healed, that was 5 months ago. After school ended, we decided to do online school for the next year, because I could not deal with this pain anymore. Every single doctor told me the same answer in different versions, like its growing pains, or it'll heal soon enough. 8 months into my journey, we found a doctor that had dealt with patients like me.

Pain but no explanation. She told me that I had crps, and what's so different about me, is that my skin is not sensitive like most on this forum. It is the deepest pain in the world. Even if you were to hit my back as hard as you can in this spot, I wouldn't feel it. She gave me alittle pain medicine to get through the week as my next stop was Baylor.
Baylor
I was referred here. The baylor outpatient/inpatient program deals with CRPS/RSD/any other form of wierd pain/speech disorders/everything imaginable. I had to take a series of tests, and they accepted me. I was to go there at 8 am for my first appointment. (typing this is making my pain a little better at the moment, I don't know why ) Random thought I'm having right now: No one understands the pain.
Carrying on, 9 months into my journey I had finally started the hardest program of my life. I had been bed rested for the summer before coming here. The main goal of the program is to reprogram your brain into thinking, you can do things, even if there painful. I did a series of super hard physical exercises, that I'd never done before. Tennis conditioning is hard, but this was the hardest thing I had ever done.
WASP STING TERROR (OMG)
Three months before baylor, I walked out of my house into the garage. I was immediately hit with a swarm of nests (or so I thought), but we checked for bites after, and there was nothing. Let me describe the situation. I was walking out briefly to get into the car. It felt like a swarm of wasps attacked me. I immediately fell to the ground and started screaming. My mom took me inside, where we put a fan to blow on me. The fan seemed to help. This was a good thing, as these would happen a lot more often then I expected. Think of it like this, a whole wasp nest attacking you if you ever get anxious or hot. It was a living hell.

Imagine what it's like having your crps/rsd AND a swarm of wasps stinging you for part of the day. HELL. This happened for three months, and made my experience WAY more awful.
Carrying on with the Baylor story
Baylor program for me : 2.5 hours of PT OT and neuropsych. PT and OT consisted of exercises that would trigger the wasp attack, and triggering my worst pain. (Worst pain being like, you know how you're always in pain, obviously with this disease, but when that never ending pain gets worse, as worse as it can get, the pain that makes you depressed, etc) Anyway, the program was designed to trigger it so much, that it'd go away. The only thing I learned from this four weeks was how to think positively, and be proactive vs the pain, not lay on the couch in agony all day.

The only thing positive I got out of it, was I started swimming, which really helps me and I do enjoy it. (Note that I forgot that whilst I was here the pain spread to my knees, happily we worked through it and my knees are better now)
Conclusion:
Right now I am still in the pain I was in when I started. Thought: O wait, I should probably describe my pain alittle more. Basically, in my mid right back there is an area the size of the bottom of a baseball bat. The bottom of the baseball bat then inserts itself into my skin 24/7, and never leaves. It begins motioning in a out, like a dove flapping its wings. Imagine in your head a dove that never stops flying. (Hopefully I'm making sense, lol what am I saying). But anyway, as the baseball bat is inserting itself inside me(Please note, I have no choice, this baseball bat does whatever it likes to me, its like an abusive relationship x 100000000000000 lol), it spins around in my ligaments, and then exits whilst im sleeping. (sleep helps alot, the position of laying down is the only position that relives it some what;sorry forgot to note this lol)
Anyway I hope that you all read my story and can relate/get some relief somehow in reading this. I know what you're going through.
Take care, Blake
PS: CRPS SUCKS
PSS: WE CAN FIGHT THE BATTLE AND WIN IT
PSSS: DONT DOUBT YOURSELF, EVEN IF YOU DO, TURN THAT DOUBT INTO ANGER AND TURN THAT ANGER INTO BEATING IT
PSSSS: Please comment as it's very wierd to me how 99.9% of people here are adults(at least the ones that ive read) and 99.9% of people are sensitive on there skin,(AND THERE SKIN SENSITIVITY IS A MAJOR PROBLEM) im the complete opposite, maybe we can debug this like mythbusters!
Hi Blake, I am so sorry you have this as well as all these helpful people here. I joined another site but hardly anybody answered any post of any bodies. Love this group.I am new to this. Just today having the worse pain since finding out I have this about 3 weeks ago. I don't do pain well! Gonna try to learn meditation. Today started out great. My hand wasn't stiff when I woke and I thought great maybe it's getting better then after my OT reassessment , checking hand straight and range of motion I really stated hurting about a hour later. My arms were hurting ever my good arm,that has eased but now my neck and face are burning. There has been a lot of stress this week for me . Keep us updated and hope that medicine helps you. I am gonna ask my neurologist about it Monday. I think he is gonna order a MRI then too. Just wanted to say hi. Hope you are better soon. Hoping and praying for remission for you.
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Old 12-15-2013, 03:14 AM #24
Nancy Wilson Nancy Wilson is offline
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Blake: I am so sorry you have to suffer with this horrible disorder at such a young age. I pray for your healing. Be Blessed
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Old 12-17-2013, 04:24 PM #25
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Hi, thanks cathy and murgir. Praying for you too!
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Old 12-18-2013, 12:46 PM #26
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Quote:
Originally Posted by crpsage16:( View Post
Hi, thanks cathy and murgir. Praying for you too!
Really glad everyone can share or thoughts and ideas..Our group must stick together..We may win in the end..Keep positive..Glad everyone is here..Happy holidays..And Lots of Prayers
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