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-/)
-   -   Our Stories & Introductions (https://www.neurotalk.org/reflex-sympathetic-dystrophy-rsd-and-crps-/10725-stories-introductions.html)

Nancy Wilson 12-14-2013 07:00 PM

I am a newbie
 
Hello: I am a newbie to NeuroTalk. I was diagnosed with RSD two weeks ago, I have been disabled since 2005 due to an auto accident. I have been battling fibromyalgia, perephial neuropathy, arthritist, migraine headaches, IBS, and several damaged disc in my spine since the accident. I really would appreciate making new friends who understand what I am going through. I have a awesome family, they do their best trying to understand what I am going through, but as you all know, unless you walk in our shoes it is impossible to really understand our struggles. Thanks for being here.:winky:

fbodgrl 12-14-2013 11:21 PM

:Wave-Hello:

Welcome to the group.

heatherg23 12-16-2013 11:47 PM

Quote:

Originally Posted by Nancy Wilson (Post 1037045)
Hello: I am a newbie to NeuroTalk. I was diagnosed with RSD two weeks ago, I have been disabled since 2005 due to an auto accident. I have been battling fibromyalgia, perephial neuropathy, arthritist, migraine headaches, IBS, and several damaged disc in my spine since the accident. I really would appreciate making new friends who understand what I am going through. I have a awesome family, they do their best trying to understand what I am going through, but as you all know, unless you walk in our shoes it is impossible to really understand our struggles. Thanks for being here.:winky:

Hi Nancy,
Well you have plenty of friends here. You can say anything and we can relate. I wanted to mention something about your Fibro... I was wondering if your accident (if thats when you damaged your discs) coincided with your Fibro diagnosis. You don't have to answer but I'm asking because I had a torn disc in my back for 10 years but instead I was misdiagnosed with Fibromyalgia. It was a hellish 10 yrs. I had a minor surgery to fix it and the pain was gone for good! The tear was so tiny 12 previous docs didn't even see it on an exray. During those years I had pain in both arms, most of my back and both legs. I thought if the fibro dx & your disc injury happened at the same time that might be a possible answer. just throwing it out.

You have been through a lot with that list of conditions. That can't be easy. I have multiple conditions and having this place to vent is extremely helpful. Also to learn, I've been back on the site for a few weeks now and have learn several new things. you can ask just about anything and get some answers.

Take care of yourself!!
Heather

fuzz 01-02-2014 07:16 PM

trigeminal neuralgia
 
Hi

I am a carer for my wife who was diagnosed with trigeminal neuralgia 5 years ago

I have joined the community to seek advice as to how I can be a better carer

Kind Regards

:)

Chemar 01-02-2014 07:41 PM

Hi Fuzz

I see you have posted on our RSD forum by mistake.

The Trigeminal Neuralgia forum is here http://neurotalk.psychcentral.com/forum26.html

lonewolf 01-23-2014 05:58 PM


Hello I'm new here also new to crps/2
I had a foot injury in July 2012 from a abusive partner. He did not allow me see a dr. I got out of that in Aug.2012, went to the dr. in Oct. 2012. He sent me to a surgeon, had a MRI find out I had a torn tendon(12/2012). Had surgery in April 2013. My foot got worse after surgery, July 2013 had another MRI, he told me some people take longer to heal. I was in alot of pain so he put me on Tramadol 50mg every 6hrs. help some. Well my pcp didn't like that, so he sent me for a second opinion in Sept. 2013. He told me I have nerve damage & put me on gabapentin 300mg 3X daily, kept me on tramadol & sent me to a pain dr. I got a app. for 12/9/13 she agree about the nerve damage & upped my gabagentin to 600mg 3X daily & send me to the Hosp. for test, on 1/8/14 had a Bone Scan & EMG, I was diagnose at the Hosp. for CRPS/2. This has been a long painful wait. My pain dr. said yes to the crps/2 & upped my gabagentin to 900mg 3X daily, toke me off tramadol put me on Nucynta ER 50mg 1tab. every 12 hrs.
I need to start Phy. therapy but with my ins. have to hold on that. no income, live with my Mom & son. I just hate it when I have to count on them. I'm the one who is to be taking care of them. My son has MD, get SSI. :( :confused:

lothgar 02-12-2014 11:26 AM

Hi all
My name is Adrian and I have had CRPS since Sept 2009.
I am a single dad with 3 kids, 9, 6 and 4.
I was a master carpenter, master millwright and welder. I also was a volunteer firefighter for the United Nations.
I worked for the United Nations and became injured at work. I lifted around 1600lbs of steel off of a coworker to save him from being crushed to death. I administered first aid, called in his stats, called in for a flat board and neck brace all after clearing the steal doors off of him (I lifted the doors as a stack, not 1 by 1). I was in pain but still finished my day at work and even came back in the next day, even though the pain was a lot worse. Med department at UNHQ sent me home and told me to go straight to hospital. Then I get the news, torn muscles in chest, right shoulder, right arm, neck and back. MRI results show 3 bulging discs and 3 herniated discs in cervical spine, plus 4 bulging discs in lumbar. CRPS kicked in within 5 days and I have lived thru hell since then. It took 3 1/2 years to find the right Doc to help stabilize my body, his name is Ronnie Hertz if you live around NYC, Great man that really cares. A year after the rescue I was finally told that I am permanently disabled at which point wife said "I will not be married to a cripple" and tried to shove me down a flight of stairs. After 3 years in court I am divorced and raising 3 beautiful kids. Due to the spinal injuries my CRPS spread like wildfire to attack my whole body. I will never gain remission from my CRPS, nor can I have any surgeries to repair neck, so I accept the stability I have and whatever pain I must endure because my children are my life. Nothing in this world can give me greater strength than the love of my kids and no injury or disease will stop me from being the best Dad I can be.
This is the short version, kids won't leave me alone any longer, lol. Thanks for checking it out, Cheers.

ginnie 02-12-2014 08:26 PM

Hello
 
What a good testament you give with the power of the love you have for your children. God bless you and give you strength. I am so sorry you have the injuries that you do. ginnie

ger715 02-12-2014 09:52 PM

Adrian,

Thank you for your post. Ginnie is right "what a good testament you give with the power of love you have for your children". Does disability allow you enough funds to help caring for yourself and children? Also, are you under the care of a Pain Management doctor?

When the kiddies give you a little extra time, please let us know how you are getting along.


Gerry

lothgar 02-14-2014 11:51 AM

Quote:

Originally Posted by ger715 (Post 1050647)
Adrian,

Thank you for your post. Ginnie is right "what a good testament you give with the power of love you have for your children". Does disability allow you enough funds to help caring for yourself and children? Also, are you under the care of a Pain Management doctor?

When the kiddies give you a little extra time, please let us know how you are getting along.


Gerry

Hi Gerry
I live with my brother and he does a lot to help both me and the kids, my Doc is Ronnie Hertz, he is the best Pain Management doc I have ever found. Like many of the other members here it took a long time to find him, he really cares plus travels to Europe and across the US to learn and share about new treatments. Thanks for asking.
Adrian


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