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-   Reflex Sympathetic Dystrophy (RSD and CRPS) (https://www.neurotalk.org/reflex-sympathetic-dystrophy-rsd-and-crps-/)
-   -   new here, new crps? (https://www.neurotalk.org/reflex-sympathetic-dystrophy-rsd-and-crps-/18605-crps.html)

mrsmac 04-30-2007 04:58 PM

new here, new crps?
 
Feeling kinda silly posting a message but I so need to talk! Feeling as though I am losing my mind!

I will try to keep it short hopefully you will respond.

Had tarsal tunnel release end of Feb. 07. The next morning, extreme burning from foot to upper calf. Worse pain I have ever been in. Drs. order to keep splint and wrap on for 15 days. I had to remove at day 3, to painful. Noticed then the purple color. At 3 week, Dr. said had mild crps. I had never heard of it, and i am ashamed to say i am a nurse. Long story short, now 2 month later. Pain is better, the burner is on simmer. Ankle still swollen, ruddy in color when sitting or standing, normal color when walking. It feel like it is wet at times, but dry when I look. Extremely sensitive, i wear a sock and that helps. The reason i started surfing internet today is to find out if the reason i can not sleep is due to possible crps too? i guess if this is truly crps, it is...right? My case (if it is crps) is mild compared to other i have read about. i pray it stays that way. Any comments? Needing a friend who understands.

Jomar 04-30-2007 05:23 PM

hi mrsmac,
Nice to meet you.
Ask any question that you need to ask- we're great at just talking too.
I'm sure someone will be along to help more about the sleep issue.

mrsmac 04-30-2007 05:30 PM

thanks
 
thanks jo55, nice to meet you too.

Does my story sound crazy or "normal" for crps. Do I need to be committed?

Jomar 04-30-2007 05:48 PM

I know RSD can happen from surgeries or even a minor injury, yours showed up after the surgery right ?

I don't know if it would show up so suddenly though??
It almost makes me wonder if you might have been misdiagnosed or if the surgery had a complication.

I think i would see a different doctor for a second opinion- take the surgery notes and any films or test results with you.

I don't have RSD myself , I have TOS {thoracic outlet syndrome} but I read many of the forums and most will suggest a second opinion espcially if post op there is still some problem.
the reason-
>The original surgeon may not want to admit that a mistake might have been made.

our useful links & more thread-
http://neurotalk.psychcentral.com/showthread.php?t=247

carose 04-30-2007 06:35 PM

Hi MrsMac, No you are not crazy, but RSD will and does do crazy things to us. I was just at the DR. this morning and one of my problems is sleep, or I should say lack of sleep. Sometimes I can't stand for my toes to touch the sheets and my back is going into muscle spasms and my arm hurts and the muscles in my leg start cramping along with what feels like bee stings in my foot etc etc. I work all day so I should just fall into bed and not wake up until the next morning. Even when I have a day off the pain is still there. My eyes are so swollen I just look out of tiny slots in the morning.
My RSD is from an auto accident. I know about 10 min. after the accident something was wrong with my hand. I had a fractured sternum, but my hand was swollen on fire and full of PAIN. They could not find one thing wrong with my hand-not at the hospital, not at the Dr. office the following week not after months of PT. Finally a sports Dr. looked at my records and told me what was wrong. Over a year later. I have dystonia in the hand now, but I made it work by using it everyday. I get botox in it to keep the fingers from digging into my palm. All in all I am lucky to have found a wonderful DR. that knows how to treat RSD.
Please do not ever feel you are crazy, believe me I had to pay $90. an hour to find out I wasn't I just did not know who I was with all the strange stuff going on and no one known what was wrong. Of course, if insurance is a factor you are just making it all up. Right- how can you make up something so awful Hugs, Carose

frogga 04-30-2007 07:40 PM

Hey Mrs Mac

Welcome!! (but, sorry you have to join us!). Don't worry - my entire family are medical/ nurses and they didn't know what RSD was - very disturbing as my mother was an orthopeadic nurse before moving into the army.

Sleep problems are all part of RSD - many of us survive on little or no sleep at all for days at a time (though i know others that have almost no sleep problems). These generally appear to be because pain wakes people up, you can't get comfortable, or the alloydinia.

One of the others who is more knowledgable will probaly be more help, but just wanted to say Hi!!!

Froggsy xxxxx

mrsmac 04-30-2007 07:55 PM

thanks jo55, carose, and frogga for making me feel welcome. Carose thanks for sharing your history, sorry you are still suffering. Frogga, I read your story on the other tread, so sorry!

As welcome as you have made me feel, I prefer to be a supporter of you and not one of you. I am sorry if that sound horrible.

My doctor told me to not look this up on the intenet, that it would scare me to death...and it has. I am scared. I have a 3 year old daughter that I want to be able to keep up with. I am 42 y/o, so being a older mom is a challenge in itself. :)

Can you have crps and have mild symptoms? I have symptoms including sensitivity, burning, stiffness to joint and color changes...and now sleeplessness...however my pain level is not high. Is this right? Can you have a mild case?

frogga 04-30-2007 08:07 PM

Ooops - sorry, I didn't mean to phrase it like that!! no offense taken at all - it was my phrasing!!

What I meant was welcome to somewhere where we all understand what this is like.

I know lots of people with mild RSD who recover really well and move on with their lives and have no more problems. That's why support groups can be scary to newbies. The people here are mainly those who haven't recovered and are years into pain. However, for every one of us on here there are 20 or 30 or maybe more people who have made a full recovery and never arrived on websites like this - because they haven't had the need to find it or need it.

RSD comes in all shapes and sizes - many people get it very mildly and with some PT, blocks etc many make a full recovery. Some make a full recovery with no intervention at all!!

Froggsy xxxxx

carose 04-30-2007 09:27 PM

Sorry I got carried away. Just wanted you to know that you are not crazy, RSD does different things to each of us and you can go into remission and never have a problem again. I personal know a lady that after a year of treatment went into remission and has has no signs of RSD for about 8 years now. Since you are getting early treatment you stand a very good chance of this happening to you. Hugs, Carose

junk4myemail 05-01-2007 02:48 AM

It took the message boards and websites to say to my doc "hey, I need to be referred to someone else, someone who can help me" I found knowledge in what I have read and it has been the best thing I could have done. Every doctor I went to has stated virtually the same thing, "sorry I can't help you, your case perplexes me, let me refer you to another doc." It wasn't until my water therapist stated the words RSD and I started doing the research did I finally feel hope. My pain management doc confirmed RSD/CRPS. He is also very optimistic about my recovery/remission from it. (I am still early on in my acquisition.) He was happy to realize, 1. that I have done tons of reading and research, 2. that I was so aggressive as to request that I be seen by him.

Good luck and use the sites and boards as a backbone, as information needed to help you through that next moment, and not as something to fear.


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