NeuroTalk Support Groups

NeuroTalk Support Groups (https://www.neurotalk.org/)

- Reflex Sympathetic Dystrophy (RSD and CRPS) (https://www.neurotalk.org/reflex-sympathetic-dystrophy-rsd-and-crps-/)

- - New here (https://www.neurotalk.org/reflex-sympathetic-dystrophy-rsd-and-crps-/190781-new-here.html)

Yeah I don't mind the regional part going I suppose, although I get why it's there as it does start regionally (in my case in Yorkshire lol tee hee). At least it wouldn't be looked at as "craps" then though. :wink:

We could think of a new one? I can think of a few choice ones but none that are sanitary enough for the forums. :Girl(angel-flying):

Lol Kathy...The mind boggles! Suggestions on a postcard? :winky:

The 'regional' part is because CRPS occurs initially in a 'region' or area of the body. It does not start in the whole body, although it can spread far and wide (as we know all too well :rolleyes:). This part was added to the name to distinguish CRPS from other syndromes or conditions that affect the entire body equally. CRPS is regional by nature, even if for some folk all the 'regional' bits join together to encompass pretty much everything...

It's an interesting debate, but I think we can assume (tee hee) that when the decision to change the name was made, it happened after some pretty heated debate involving a few choice insults, at least twelve polystyrene cups of coffee spilt across paperwork, two dozen egg sandwiches squashed under leather lace-ups, and at least three balding heads sweating profusely as they tried to argue their case :D

I do understand why those who lived with RSD for years feel attached to that name, but I do wish we could all unite behind the new one...

Bram.

Another "nutty nurse"!!!

Quote:

Originally Posted by cheryl1593 (Post 996543)

Hello to you, I opened my computer...I pad whatever this thig is.......started reading here and just cried...still crying.....because everyone here understands what I have been through...well not exactly I know....but RSD!!! WOW does this hurt :eek:

I am sorry to people here that you hurt so bad. I know!
I survived 10 years without correct diagnosis. Nobody listened to me and I learned how to hide my pain after a couple years. So I worked as a home health nurse for the last 10 years. I should have known about this right? Well, i only had one patient that had RSD, and we were not given very much information about pain syndromes....hmmm wonder if DEA had anything to do with that....who knows. So no I did not know anything about a pain syndrome that causes cold extremities.....before they took the extra rib out my hand was turning ice cold and I was in horrible pain. Following surgery I was unable to do any PT. my surgeon called my PCP and told him no PT. so I just got stronger by my own means.......I was given pain medicine back then and it did help....some.

After 4 years and 2 rib removal surgeries I got myself better and went back to work....I had bills to pay.

I told many people my pain was bad, nobody listened.....I just thought (I had a birth defect) and I was always going to have pain.....just get on with my life.

My condition deteriorated over the last 10 years. I lost my family,friends, everything. It was like I had leprosy, nobody understood. Not even me. Until now.

A doctor in Houston (pain specialist) finally heard me and believed me and ordered some kind of block......he goes oh, you have CRPS type 2 and sent me home with new medicine. A patch, I put it on and in 2 hours later I was pain free for the first time in 10 years. That was the 27th. My 50th birthday was the next day June 28th. Birthday miracle I say! I cried the whole time....but tears of relief, happiness,joy.....like I cry now. OMG.......how did I survive that? I don't know :eek:
Sorry post so long...I just need to write this.....process in my brain what happened to me. I have tried to be brave, but there were times I just was so confused.....I did not know there was pain....and OMG PAIN.

I was saying I had bad pain.....right?

So sorry we are all here. I am just so relieved beyond belief, you just can't imagine the relief......after all this time.

I hate that the medical system changes the names around of things. They have been doing this a long time......

I think the reason I went undiagnosed for so long is that I had surgery to remove the rib....which stopped the progression of RSD. But I still had the pain part and nothing else. My hand does not get cold anymore, I don't have pseudo angina...or the profuse sweating. Only had the pain left after surgery. Which I was happy for a long time as I did get some better after surgery.

I do have allodynia and some other things and I told people about it along the way.....nobody believed me all that time.

Wow. Just wow. Thank you so much everyone here you all made me feel so much better this morning and I am NO LONGER ALONE! That is the most important part to me.

I hope I can be some help here to everyone and I will give support back as I know we all need that. I understand fully the suffering of RSD! Thanks guys.
:grouphug:

Well hello again! I have met quite a few nurses here , currently there is a anesthetist on the SCS and pain pump forum under "medications" I find it interesting all the nurses who don't want to admit how bad the pain is especially after the "there is no physical reason you are in pain" I am sure you have heard many of the cruel cruel things we all hear, my original orthopod apologized after he did my 1st knee scope, "just to keep me from whining... " I had a "HUGE" torn cartilage, in there. That is the only reason I still see that doc. When I have had other injuries the first thing he does is to check how much my RSD has spread. He has been able to keep my spread down from my injuries.:D
I have been working the last 3.5 years in acute care, ER and surgery. I am afraid my time as an active nurse is rapidly coming to and end :( . I did 8.5 years of home health/hospice. My heart couldn't take the hospice any longer and my body was no longer able to drive the miles I was required to drive....
Well come on in the water is fine here and in many of the other forums you can find kind caring pple.:D

LOL, you are just too funny. I have a few choice words we can call this without profanity.....let's see. "YOHNI" pronounced yo- heni...which means "you obviously have no idea" LOL. Only people who experience this has any understanding of what we deal with...Not even most doctors.....and this world is not really set up for us. Weed eaters, lawn mowers and my arch enemy the blower...wow. Ouch. So many things.

Here is a god one "****" which is "still hurting in tiddies" here here.

Funny...... Yep RSD or whatever it is should be called ****. That pretty much sums it up. LOL.

Take care everyone, so nice to meet you and hope I did not offend anyone. Just laughing instead of crying which is good. Hope everyone is doing alright tonight. I was just diagnosed 2 days ago and the new medicine seems to be working for now......thank god. Take care, bless you guys...thanks for the support, you made me feel better :)

Quote:

Originally Posted by pooh_ac (Post 996701)

Well hello there, I missed your post here. Thank you for the time in saying hello. I have not spoken to another nurse with RSD. Seems I missed a huge diagnosis on myself. LOL. Doctors and nurses make horrible patients, I think only because we do not know how to communicate to our doctors as their patient! I found that I tend to make them nervous as I speak in medical lingo as it is second nature. But maybe doctors are not used to that coming from their patient. Anywho, I stopped doing that and now sense a relaxation in my doctors behavior.

I agree about not admitting pain from nurses, but I also see this in many people. To tell the truth my 10 year missed diagnosis was due to my insecurities. Our culture has a taboo around the sick and dying. This taboo is killing our hearts, all the stereotypes we are supposed to fit into is also killing us. So sad to me. But I am trying to do my best to teach myself and help others who are traumatized like me as now I understand better.

I think the 10 year missed diagnosis happened because of these taboos and my insecurity. That built in "American work ethic" along with "work hard and support yourself" or else you are a "lazy lowlife":confused: . After a little therapy these ideologys is what I found inside my head. Crazy how I could not even rest when I was terrible sick. Very very sad how this happens to so many people. before my surgeries I was driving around seeing patients and sobbing in between each patient as I drove, I was just in so much pain I could not help myself. I have had a very,,very sad 10 years. I am finally not suffering like that any more and am so much happier as a person.

Another reason I suffered for so long is that I was brutalized by my caregivers when I would cry or say "I am really hurting" as I look back I think they just did not understand what was happening to me and neither did I. Does not excuse their bad behavior though, they could have asked me more questions but they didn't. Since I was told by every one around me to "suck it up" and "you need to do what every one else is doing" I stopped talking about being in pain.

My family and friends treated me bad, so I moved away just like a leper. I had no support and I lived alone so I could at least cry in my home and nobody could say " you have to be strong" or " everyone has pain sometimes" wow you gotta love that one huh?

Another reason this happened to me is that I was given the wrong information in nursing school, and only saw one patient with RSD. I do not have swelling, redness, atrophy ect...so I dismissed the idea I could have RSD. As nurses we are not instructed that there are "pain syndromes" other than RSD. Well I didn't get that information anyway.

Sorry to rant here, I just have to get this out of me :confused: so I thought I didn't have RSD because my symptoms did not match. I had cervical ribs and that is what started the whole thing "a birth defect" oh no another taboo. I was up against many taboos at once and that just shut me down. I had no voice because I felt it was me that was wrong. My body was wrong. Right? Thank god I had some counseling and my eyes are open now. I am pretty angry, but that is expected after what happened to me and after suffering like I did for 10 years. My birth defect made the thoracic outlet have no outlet LOL. The rib on the right was huge, and I am a small woman. There was just no room for my nerves, so one of the nerves was just crushed before they were able to do surgery, so I had RSD before surgery and my pain did start before my surgery when nerve was being crushed. My surgeon said " how was you working like that"? The median nerve was almost flat. Well everyone knows we have to do therapy before insurance will pay for surgery. Well that's why it took so long to help me, and I worked all the way to my surgery date. I wanted to die, but I just have a very strong will to live instinct unfortunately......but I am glad I survived as I am going to use what I learned and try to help others in my situation. I know I did not suffer for no reason and there is a purpose for me. Just the way I am, disabled and all!
I also believe the diagnosis was missed because the rib surgery decompressed that nerve and I did not have the progression or RSD. My cold hand went away, many of the RSD symptoms stopped except for the pain. I think the surgery may have disguised the RSD. I do not know.
Sorry so long. Anyway I wrote a letter to all my family and loved ones and I go home to see everyone in 2weeks. I can't wait to see them. The truth is out. Some will have to deal with feelings of guilt "but I will help them" as what happened was not all anyone's fault. But some I will look in their eyes and tell them how I feel about what happened. Being mean to someone in pain to "shake them out of it" is NEVER ok. I am not going to be mean like they were to me,but I will tell them out of love how I feel about what happened so they can learn from this horrible experience we all went through. I will not let my suffering not have any meaning , I just believe it is a awesome chance to grow our hearts.....like in the grinch movie. So wish me luck and any advice would be appreciated......I really want to tell some people how evil they are and tell them how much they hurt me, as living alone with this disorder was another lower level of hell on this earth. But I know that will not help anything :confused:
Oh my god, I just had to get that out of me. I am so glad I am finally strong enough to try to deal with my emotions about this. I want to finally be free from that and I am finally feeling better after 10 very hard years.
Take care everyone! I sure hope this rant can help someone here. LOL!

Cheryl,
This is a sad story, indeed. I cried with you. So sorry for your pain and that you are an RSD chronic pain patient. I understand your pain both physical and mental. I am afraid to say, as it might jinx me, my family for the most part seem to be fairly understanding of my CRPS. Reading your story, though, reminds me of the few doctors that were not interested in treating me or took advantage of me ( dragging out my diagnosis).

I am glad you are in a better place now. Thank you for sharing your story.

Quote:

Originally Posted by Djhasty (Post 996942)

I do feel
So much better. I am stable and my pain is finally well managed. Thank you for the sweet note to me. I just had. Write how I felt, and I am better now. I am going to give my family the information about CRPS and that I can't help it that I am broken. My spirit is better, and I think the reunion with my family will go well. They just did not know how sick I was and did not understand. Now I can explain to them what this is since I finally figured things out. I don't know why one of the 5 doctors did not know what was happening to me. Oh well, nothing can change the past. I will have a good day today and many better tomorrows. Thank you so much for the support here. I feel better! I am making tie dye shirts and I just love it.....anyone can see them at ISLANDTIEDYE.com

I am really proud of my work LOL. I love artist work more than nursing and I can retire now!!!! I am in heaven now, where I belong! Take care!

ISLANDTIEDYE.com

Cheryl,
I visited ISLANDTIEDYE.com. Nice work!

Welcome and sincere sympathy for your RSD. I prefer RSD myself. I've seen 3 pain management doctors who say CRPS, and 2 others who say RSD. Many nurses look like a deer in headlights when you say CRPS but then go "ohhh" when you say RSD.
Either way it is so good to have this forum as a support group because we are so misunderstood by so many other people in our world. This disease affects is all a little differently yet, we all seen to understand the weird inconsistencies of the pain and mobility issues.
I'm interested in what is giving you some rellief.
I just had my SCS trial placed in today and I will place my experience in a different post.

I'm convinced the more acronyms for a disease the less the medical community knows about it! :rolleyes: