I have read some posts on here and on other sites that have just sent me wanting to find a deep dark hole to hide in. Some people are just so angry. Its not just people with RSD/CRPS. Its the people around them. I have CRPS but I'm not angry about it. My husband isn't angry about it. We get frustrated with the inability to stop the pain, and we get frustrated that the Drs won't listen to us. Why get angry about something we can't change. We have it, all we can do is fight it. I have read people lashing out at the people that understand what they are going through. Please people don't. That is the quickest way to put people off and then ypur whole support base goes with it. We need to support each other, we NEED each other and our experiences. That way we get a better idea of what we need to do next. Fighting with each other and verbally as well as mentally hurting each other isn't the way to go about fighting this disease and its complications. Please listen to me. I don't want to fight you. I am already fighting for me and my family to have as normal a life as possible as I go through this.

This is a tough issue for sure. It makes me sad when I see people being hurtful to others especially in forums like these. Haven't personally seen that here which is a true blessing!! Honestly I think things often get taken the wrong way especially via the internet as it is difficult for most of us to express just how we feel with characters on a key board. People also forget that much of our emotions, vibe and overall feelings come from body language, tone etc., so typing out our opinions or stories can send a completely different message than what was intended. I hope we all continue to realize that when posting or reading this amazingly supportive forum.

As far as anger goes.. I'll be the first one to admit "I am angry" about this disease. I am angry that it happened and angry that it wasn't caught before another surgery was performed that only made things worse and less likely for remission. That being said - I am still extremely optimistic and positive in facing each day (or hour). I would be lying if I said I was not and that frustration was the only emotion I was dealing with. Do I let that anger interfere with my fight.. NO, in fact just the opposite. It does strengthen me and fuels my determination to not let it beat me even more so.

We do need each other - our friends, family and loved ones to make it through this horrid disease. Without them life would be so much more miserable!

Thanks for that Zookester. After infound out I have Crps I went a little balistic because I had 3 surgeries that weren't needed. 2 lat releases at a pat/fem resurfacing. I have a ton of pain and not saying that is better or worse than others but I do try not to let it interfere with what I say in here. Heck when I found out that weekend I went and blew a couple targets away at the range lol. Thats how mad I was no one had caught this early enough for me to possibly go into remission. I try my hardest to keep it inside so I wont act out against my husband and son. Now I am trying to get into the frame of mind of yes I have it. Lets do the research and figure out how to keep it from getting worse. I don't like taking out my anger and frustrations on others. I'm a loving and caring person thats why it makes me so sad that people can just blithely tear apart a support base by saying hurtful things to the people that understand and want to help shore up that support. Ugh I don't know if I am saying any of this right but I hope I am getting my point across. We need to help each other not tear each other down. I wish I could say what I really mean dang it lol.

Hello Allanira,

lol.. just having a place to share/vent when needed is very important. Everyone should have the opportunity to share exactly what is on his/her mind.. even if it may offend some.. I'm sure others will benefit in one way or another by it. Not everything that is posted helps me nor do I understand all of what other's are going through.. how could we; we are all unique in our injuries, coping skills, med tolerance and disease process. So if something doesn't sit right with me.. I just bypass it. It is my choice to read or to post and I would hope that the things I say are helpful rather than hurtful.

I'm sorry you had to undergo such a long diagnostic process and that you had to endure multiple surgeries on top of that. I'm happy however to hear you are facing this beast and doing what you can to fight against it. I can sympathize with you in that my CRPS II came after a head on collision (totally not my fault) caused injuries from the neck down and a traumatic brain injury. I endured 10 major surgeries 4 of which left me in a hospital bed on a special machine for 6-8 weeks after being released from the hospital.. it was a long an complicated recovery. It was during what I thought was to be my last hip surgery when I awoke in recovery to this horrid disease. Of course I didn't know at the time what it was but, after yet another operation and attempt to repair the 3 nerves that were injured during surgery that we later learned CRPS had already set in and the surgery only caused it to spread rapidly. Luckily I was diagnosed within days after that surgery (#11) but the pain and spread was severe enough for 4 out of 5 specialist to recommend the spinal cord stimulator ASAP.. I went through that procedure and I'm glad I did, it has helped enough to warrant the procedure. I run it 24/7 and continue to use many of the other methods of treatment (lidoderm patchs, gabapentin, Butrans patch, Oxycodone and a ketamine/lidocaine compound cream) to also help control pain. It is a struggle daily to keep pain to a tolerable level but.. I'm fighting hard!!

Lidocaine infusion therapy is my next weapon of choice.. we plan to start that next week. I'm hopeful it will help me manage through the winter months.

Hang in there and keep on fighting!
Tessa

I couldn't agree with you more on both points that you made.

I learned Sign Language at a young age. Fun fact: I went to high school in Illinois with Marlee Matlin (she's an actress who is deaf if you don't know who she is). We were friends and hung out together. She's a great person by the way. She won an Oscar for her role in Children of a Lessor God. The high school was half hearing and half hearing impaired. Anywayyyyy....... I learned through Sign Language just how import body language is, and all of that is lost in simple text. It is so easy to misconstrued another sometimes when we don't have that body language and voice inflections to pull the conversation completely together.

Anger: I was mad as hell for a while, a long while. I was in my mid 30's when this happen to me and I felt robbed. Then I learned that there are some who have had this most, if not all of their lives, and have never known a day without it. My heart goes out to them for sure.

I still get angry from time to time, but I sure don't spend my days wrapped up in anger any more. I try to keep light, but I fail at times. About the time I am getting used to one phase of this disease it will change / worsen. I guess it might be slightly easier if I wasn't still raising kids, trying to keep up with home and a business (that I am bringing to a halt in the next couple of months). See it's things like that. I have worked my buns off for ten long years. Sacrificed in every way to build it. Watched it become successful and then not be able to keep pace any longer, and yet the money would be fantastic! And it's not just money, I love what I do. I became a damn good video producer and have an eye for it. Just stinks that I am having to slow WAY down or quit all together. Anywho it is what it is.

Just my two cents.

I think you've articulated yourself well. You are so right; we really do need each other. I think if I didn't have this forum and the fantastic folks on here, I would really feel very alone. I mean I have wonderful people around me, but not one of them knows exactly what it is to have CRPS. I have yet to ever meet someone with this outside of this forum. I find much solace here!

Sudden outbursts of irritability are one of the sypmtoms of our condition, it doesn't take much to turn that to anger when you find out the doctors know squat or your family or friends don't believe you.
it's what you do with that anger that matters, without it to sustain me I could not have kept on fighting the UK governemnt since Oct 2010.

Thanks Vrae,

I've always wanted to learn sign language.. hmm maybe that will be a winter project for me to tackle lol.. maybe then my sweet husband will "hear" me...haha.. he likes to play selective hearing

It is hard to face the changes.. bad enough there is no cure and any treatments offered have less odds of being effective than the odds of winning the lotto! But, wondering what next is probably the most difficult part of this whole thing - at least for me. I tend to do much better once I know what I'm dealing with.. the "surprise" symptoms and sudden loss of things that worked yesterday totally throws me for a loop. In my quest to deal with the unknown I try to play a game everyday with my body/brain. Basically I try to trick it.. never doing any treatment or therapy with any consistency. My theory is that the nerve/brain learn how to overcome whatever I throw at it.. so as long as I am "tricking" it I am hoping it won't get used to anything so that my "tool box" stays full a bit longer. I hope that made sense.

Sorry to learn of your business - I've been a small business owner most of my working years so I can understand how hard this must be for you mentally and physically. A thought came to mind after reading your post as a videographer.. have you ever considered working with attorney's who represent people injured by someone else's negligence? As an example.. I was video'd for a clip called "the life in a day of Tessa" this was to show my injuries in detail and how much more challenging my life became because of my injuries. If you did something like this I'm sure you would put a passionate spin on it considering you understand personally what suffering is all about. Also.. it pays well based on what the cost was to do this in my situation. I would think it would also be very interesting work and you could schedule it around your own limitations. Anyways.. just a thought.

Hang in there and enjoy the moon!
Tessa

Oh dear, this turned into a Brampage lol!

In the early days of this I was either angry at fate/life/sods-law/whatever for me getting something so painful and misunderstood. I felt like life had punished me for something I hadn't actually done. When I wasn't angry I was miserable in that way long long periods of pain make you. It was a very dark time, and I don't recommend it...

If I stop and think about it, I suppose the anger side has mostly died over time. It takes a lot of energy, and I couldn't keep wasting it on raging against something like this - in the end you just have to accept the cards you've been dealt and get on with things as best you can. I take satisfaction from every thing I manage to do that is contrary to what my CRPS is trying to make me do (ie lie on the sofa and cry lol). I bet we all feel it occasionally, but more often my most negative feeling with it now is frustration. Sometimes I long to stamp my foot like a little brat!!

The point I'm very badly making is that I think some folk can't stop feeling the anger thing, and maybe it gets them through some days. On a forum like this there are bound to be all types of people, and a few, especially on bad days, can be aggressive and mean. But then the nicest of pets can lash out at you when they have a hurt paw, and we all know the terrible things this pain does to your soul over time. It's a kind of venting I suppose. I'm not excusing it, but I think it's unrealistic, given what we are dealing with, to hope that there is no one out there who has become negative in an angry way about life as a whole.

The business thing is hard. I doubt there are many who haven't had to change their work life in some way - either the hours or the work itself. I had to give up my job, which I was very good at and enjoyed. I was second in command and a vital cog, etc etc lol, and I was gutted to have to walk away and see other people do the things I had had responsibility for. I was lucky to have my degree, and I started doing tutoring, and have built that up over 18 months to a reasonably busy little venture. It gives me something to focus on, and I am even (in a twisted kind of way) almost enjoying the deadline of my tax return looming large on the horizon! I spent 4 hours at the office yesterday getting my accounts ready, and felt almost like a normal working gal again It does wonders for my confidence in other areas of life. But it's not the same. That's the tough thing about CRPS affecting our work - what you do helps to define you, and when that is taken away you feel even more lost. I bet we all hate the inactive times when you just can't get stuff done...

I have to say that personally I have never seen a post on here that makes me think 'ouch that's mean'. But perhaps I've just been lucky It is true about the body language thing - we also have to remember that something might seem mean to us if we are in a fragile emotional state ourselves and take something badly when it wasn't intended. Benefit of the doubt and all that.

This has been a wonderful forum (I've tried a couple before) and I feel so lucky to have made a few cyber-mates that I feel closer to in some ways than friends I've known for years who have drifted away since my life has changed. I can rely on you lot in a way I can't rely on people in my real world. And that means I can take a few cyber bumps and bruises along the way

We are a family here, and every family has the odd spat but absorbs it and carries on the same. I think this family is in pretty good shape and deserves a glass of bubbly and a truffle. Personally, I like to think of myself as a dotty aunt wearing odd socks and giving the children treats when their parents aren't looking The kind of aunt who might have a reasonably serious conversation one minute, but then turn out to secretly be editor in chief of Bondage Monthly or the inventor of thermal pants for dogs.

I've laughed here and cried here, had my attitude about something shifted for the better, and learnt masses. I wouldn't change a thing in case we lost some of the good stuff too

Hugs to everyone who is comfortable with the idea

Bram

Bram you make me want to get stationed in England again lol. Dang I miss the fudge shop in Cambridge. I had just turned 25 2 months before this started. Who would have thought running and working out would lead me here. Oh I did the anger thing. Boy did I do it, but I tried my hardest not to take it out on people. Now its a slow cooking determination to get my life off the broken track and onto one not so broken. I worked my butt off while I was in the military. Then to be turned away from so many Drs and just because I wanted to get some relief and help really sent me over the edge so to speak. Thats when I discovered target practice. I may not be very good but it does relieve some of the frustrations and anger. I wasn't even believed at work when I told them I needed to sit down because I hurt. I can't sustain that level of anger anymore. Thats why I say I am frustrated at the system. Stupid druggies have made it harder for us and everyone like us to get the treatments we need. Insurance has made it harder to getmthe treatments we need too. This site has given me so much info and so many reasons to keep fighting to get the care I need. I may not be able to make myself understood to all but even to just a few is awesome. Heck im just a country gal and some of my long standing friends don't understand what I say sometimes and they know me lol. Now its not so difficult to talk to the Drs and talk to my husband and family. Its still hard not to keep it bottled up when he has had a really stressful week at work, but I try my hardest not to take out what I'm feeling on him. He doesn't know how much or little I hurt. We are married not sharing a brain. I would love to get back to work with a vet clinic but I can't stand long enough to clean a kennel or stall, or help with the surgeries or triages anymore. But I have my brats here at the house and when and if I get to move then I will have my mountains. The beautiful peaceful mountains lol. Zoo please don't get me started on winter comin. Its almost fall here and already I'm freezin lol. I can go from boilin to freezin in a couple minutes. But after little Clay is born then I can hopefully start treatments again. Then I might not be wakin up at 2 in the mornin lol. Vrae I know its been hard on you, what with the weather havin this beast ride you everyway from Sunday but remember we are here. I am gonna use an analogy and hope others will understand it.
The emotions and pain we feel is like trying to ride 2 wild horses at the same time. One kicks us off and the other tramples us. Its how we let it happen that matters. We can get angry but no human can sustain anger for too long. It wears us out physically and mentally, or we can get back up on them and turn them to our will. Thats the point I'm at. I am determined to not let this break me. Yes we get bumped and bruised mentally and physically every day. We don't know if its gonna buck us off and trample us. We don't know if it will be a good day or a bad one, but we get back on. We ride those horses and we feel prouder of ourselves for doing it. Like I said I'm a country girl. I grew up east of Dallas, Tx and summers in Louisiana with my grandparents lol. I couldn't think of a better analogy of what we deal with. Well I need my coffee. My besetting sin. I don't drink or do drugs for the fun of it. I just have my morning coffee. I will talk at yall later. I have a couple questions about treatments for after Clay is born. I don't know if he will be breastfed like his brother because a lot of the meds people take go into the breastmilk, but I still need some ideas about treatments I could start that might make things a little easier on all of us.