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Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board

My terrible Journey of RSD

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Old 10-10-2010, 10:41 PM   #1
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Join Date: Oct 2010
Location: Princeton, WV USA
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RSDSufferer HB User
My terrible Journey of RSD

Hey guys I am new here, and thankful I have found this forum because I have been needing so much support as I fight through this. I have been dealing with RSD for almost 3 years now and it has been absolutely miserable and I would give anything to have my life back.

It all started when I was working at Wal-Mart and went back to the claims area to do some things, there was two rows of buggies both ways with a small space in between, so I squeezed through, did what I needed to do and squeezed again back through them, my foot got caught and caused me to fall very hard onto the ground.

When I got to the hospital, they diagnosed me with a severe sprain, gave me crutches, a cast and sent me home, days went by, weeks went by, it got worse, began turning purple and blue and started becoming sensitive, I knew it in my heart something was wrong and so did my parents, so they took me to another doctor, who said I then had torn ligaments and sent me home with pain meds and a different cast, the NEXT one we went to knew right away what it was and immediately diagnosed me to having RSD, the next thing he did was made a phone call to Charlottesville to a nerve block.

From then, I have had several nerve blocks that were too overwhelming and hard to put up with. Eventually I started getting nerve burns that have basically given me my life back, I get about 4-5 months of relief before it returns with a vengeance.

When the pain returns, I am stuck not able to live the life I want or do the things I want to do, I am bed bound and if I want to get anywhere, I have to crutch around, I am exhaustingly tired all the time as well.

Not only that but since the diagnose of RSD, my immunity has gone to the pits, I catch anything and everything that is around so I stay constantly sick, I have body aches all the time, and I am allergic to so so many things now, I have winded up in the hospital several times because of them, a couple of them almost killed me.

I too also deal with the seizures, I have had numerous trips to the ER for them, only to get EEG's done and find them to be normal, they classified them as stress spells due to stress and it is my bodies way of relieving the stress. It's horrible, I will go into full blown what seems to be epileptic seizures and its frightening to anyone who witnesses it, they can last up to 6 hours {no joke} and sometimes no breaks in between, it consists of full body jerking, twitching, screaming, hand stiffing, eyes roll back in head and sometimes unconscious. They are miserable, absolutely miserable!

I have been through absolute heck and back with this, wishing and praying for a cure, dreading when the pain is due to return because I know I will find myself curled into a ball crying my eyes out wanting it all to go away and for the pain to spare me for once. My foot will turn a god awful bluish purple, with severe edema and swelling, its very hard to touch or I will scream, I can't walk, I have to use crutches and even when I do that, its exhausting.

there has also been points in my life where I felt I was at my lowest because the pain was too intense, I felt like I couldn't keep going or deal with it anymore, I felt like life wasn't worth living at times because of the severe pain, but I have a incredible fiance and family that has taken me out of that dark place, showed me so much support, showed me hope and make me become a stronger person than I never thought I would be.

And I haven't been able drive since the diagnosis due to the pain and stress spells, they fear I would wreck and hurt myself or others, so I haven't been able to drive for the longest time.

I am so blessed to have found a forum full of people who know what its like to go through this and offers the fantastic support to those who suffer, I know this will be like a home to me.

this thread will be updated more and more, to keep you guys updated!

Last edited by RSDSufferer; 10-10-2010 at 11:44 PM.

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TexMexLex (01-22-2011)
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Old 01-22-2011, 04:46 AM   #2
Join Date: Nov 2010
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Re: My terrible Journey of RSD

I'm so sorry to hear what a rough time you've had with RSD. I know its hard many times, I've had RSD for about 11 years now. It's continuing to spread so lately it's been rougher than usual since it wasn't spreading before and now it's back and its attacking.
But I read an article that I absolutely loved. It was called "Living Successfully with Your Ailment- How?" Published by the Watchtower. It said: " A sailor cannot control a storm, but he can weather one by adjusting his boat’s sails. Similarly, you may not be able to control the illness that has stormed into your life, but you can cope with it by adjusting your “sails,” that is, your physical, mental, and emotional resources. "

And then it went on and yea the whole article is really good. Hope you continue to get the support you need.

Old 01-23-2011, 10:17 AM   #3
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Re: My terrible Journey of RSD

hi just read and felt like i shld reply.. this forum is great to share you anguish and learn from others in the same or worse boat thn u.. i had a slip and fall in 09 black ice leg hyperextended bsd sprain contusioms to bone and blood clot forme immediatly .. also had previose injury to back neck and arms now i have overlapping issues .the first thing i was prescribed was my neurontin .. normally a drug given to those whom suffer frm epilepsy.. just wondering if you take this then thy gave me a muscle relaxer and a anti inflamitory( sorry brain cannt recall every thing any more so my spelling may be a little off) i was dx"d with rsd in lower right extremity also have 10 herniated discs 1 tear in L4 L5 carpul tuinnel syndrom in both arms and the blood clot left vascular damage to where my vasc dr says i will eventually need to have surgery. im going for steroid epidurals to lower bak to try to alleviat the lower back pain my neck is just regular pt and some time this month pain mngnt wnats to start nerv blocks plus he telling me i will have o tahe certain pain killers( i dont like narcotics) prob wont even take you i was injured at work..and after onset injury I lost 7 months of work then my dr,s released me back..wrkd another year than my spine specialist pulled out looks like permantly..almost 4 mnths finances gone to (poop) my family wow thy are good but i know its got to be hurting them ..all the thing i used to do now thy have to pick up my excessive slack plus take co me when i cnnt..see i was the sole bread winner of the house and we were struggling bbefore i was pulled frm wrk now we r sinking like a lead boat with a hole in it.. but still we fight on looking for the silver lining. now its winter and rsd is definatly worse ..(no seizures) headaches all the time sleep inhibited. i too was told no driveing but i goota get to drs some i dont want pain to rule my life i mean i will be in pain weather i stay home or not my kids need to rely on some one while thy r in school. cnnt have my wife leave work if they get sick.
we ll all of that to say your not alone , though this experience may differ in many ways for every one .it remains constant in that our lives have changed drasticlly and we all live in best wishes and hopes for something better for you in the future, and congratulations on finding that great fiance..they r the true gold the peopl you love and love you back equally. surround youself in their love and anything is possible.....good luck and god speed

Old 01-24-2011, 07:27 AM   #4
Join Date: Jan 2011
Location: Sumter, South Carolina
Posts: 3
Sumterdoll HB User
Re: My terrible Journey of RSD

I know where you are comming from I had my accident on 11-11-97 I have had 27 surgeries over 40 + injections and have seen 76 doctors. I wish I could give you some hope! I have had cast, braces, crutches, wheelchairs, canes,walker and arm crutches. I am on 20+ medications with a dual spinal cord stem and a generator mounted on my left collar bone. In some people it react differently, but our stories are very simular. I am here if you need to talk. I made it this far by the grace of GOD! I will keep you in my prayers! I hope I have not offended you! I wish the best of luck for you!

Last edited by Sumterdoll; 01-24-2011 at 07:31 AM. Reason: spelling and wanted to add last line

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