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

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.

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

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

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.

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

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

This isn't really the sort of place I thought I'd end up, but here I am all the same. Something like 10 or 12 years ago I whacked a shin on a steel beam at work, lost feeling in part of my foot, was treated by a neurologist and eventually regained sensation and that was that.

Well on a random Sunday night (which I only remember was 5 years ago today because it was the Sunday night before my first anniversary) I came out of the bathroom and my husband asked if my ankle hurt because it and my foot were all swollen. It was sore, but it didn't hurt. Yet. I iced it and the next morning it was fine so I shrugged it off. Except that by evening it was swollen and sore again. I didn't waste time and got to the doctor first thing in the morning. He wanted x-rays, half my blood supply and sent me home to wait for results after talking about scary things like lupus. By that Friday he decided I had a completely clean bill of health, shrugged and sent me on my way. By then, the swellling was starting earlier and earlier in the day and I could no longer wear shoes, only flip flops and the soreness had progressed to pain. Still, he couldn't find anything wrong and sent me away.

I continued seeing doctors. I all but begged for help. My leg would swell all the way up to my calf. I feared my skin would tear. I cried myself to sleep at night, silently because I didn't want to bother my husband with my pain. Eventually we stopped sharing a bed because he has RLS and if he bumped me I wouldn't sleep the rest of the night because of the screaming agony. The pain spread through my hip, and blessedly stopped there. I feared it would just keep going. And the swelling isn't quite so bad anymore but it still swells every day, sometimes more, sometimes less.

I don't even have a life anymore. I haven't worked, not really, in years. I have a "job" as a substitute teacher at a tech college and work maybe a day a month. I can't even sleep in the same bed with my husband for fear he'll touch me. My memory is shot to hell. Sometimes I even lose focus in the middle of a conversation and forget what we were talking about. My vision is all sorts of messed up, bad enough that an incompetent neurologist who can't follow diagnostic procedures diagnosed me with idiopathic intercranial hypertension about a 1 1/2 years ago. I had asked (on the advice of my doctor) that neuro about CRPS. He looked at me funny and I said RSD? When I finally started speaking words instead of acronyms he was all yeah yeah... there's no way you fit the profile for that. My new neuro is the one who pointed out you can't diagnose IIH without a lumbar puncture. She has also just referred me to a pain specialist to confirm a diagnosis of CRPS.

So, it's been 5 years. I've found myself labeled with a somatizaion disorder in my medical records. I've had a doctor, to my face, tell me all my problems are anxiety related. (He got a piece of my mind right then and there, because I suddenly had a temper control problem.) I've cried in doctor's offices as I begged them to tell me what was wrong, I didn't even care anymore how bad the news was... I just wanted an answer. And now I'm just a ball of emotions. At first I was simply thrilled. An answer, at last. It isn't a good one, but all hope for a good one was long ago lost. But the hours let it start to sink in. I'm so mad, I went to doctor after doctor and I've been repeatedly labeled as basically crazy. If they had just listened to me and taken me seriously (would they have if I were a man complaining about pain) how much suffering could I have cut off with treatment? Mostly I'm struggling with how to find hope. I tried to get help, I was in a doctor's office in under 48 hours of my first symptom. I didn't stop going either. And now it's been 5 years without treatment. If the best hope is in fast and early diagnosis and treatment, I don't like thinking about how screwed I am.

I still have to wait for this second doctor to confirm it in a month. My new (awesome) neuro thinks it is but wants to be sure and says he's better suited to treating it because he sees so many more cases than her. But there is no other explanation, everything every doctor has come up with has been completely ruled out. Other than me being completely off my rocker.

Adalaide,
So very sorry to hear about your long years of suffering & wish you did
not need to find us here. But WELCOME! This forum is just wonderful
for help, peer advice, support, venting & UNDERSTANDING!

I was pretty lucky to get dx'd. in about 5 wks. but my RSD/CRPS started out
visually dramatic. I haven't had a remission but I do get relief from nerve
blocks, meds etc.

To start off, read all you can but please try not to dwell on worst case scenarios. I don't know what part of the world/country you're in but there's
a great website RSDHope.org. There's so much good info. there.
A good pain management Dr. & physical therapist can provide many options to help so don't give up hope just because it's been 5 yrs.
Again I don't know where you're located but many of us have been lucky to
find P.M. Dr.'s knowledgable about RSD/CRPS.
Also there's a video I like on youtube (it's very long) by Dr. Pradeep Chopra.
He is giving a seminar about RSD and it's worth it even if you can only watch small segments at a time.
Try to hang in there and we're here for you!