Hello
 

Miy name is Rhonda. After several shoulder surgeries resulting in complications. Blood clot and staph infection I lost the us of my primary right hand.
The burning and numbness are thru the roof. I tried sympathetic nerve blocks and meds and more meds. It is the meds I want to get rid of. I tried the trial spinal st\imulator 3 weeks ago. Really gave me the same feeling but at low voltage it kind of covered 60%. My leads were in the cervical area. This was the scary part. I have not vented on a forum in a long time. Anyone have stimulation in the neck for arms and hand? I have seen back and legs but not much for shoulder down. Looking for advice and hope. Thanks and prayers for you all.:confused:

Hi I'm Sylvia and I'm 10 years into this...
 

Hi, I just found you guys a few weeks ago, read through some threads, posted a few comments but didn't introduce myself yet. Partly because I hate talking about me and about this. It's when I talk about what happened to me that I get very angry, I get more depressed and it drags me down, a lot. So, Ive been waiting for an opportunity where I felt a little more energy and time before I started, knowing this would take some time and self focus.

I had an injury at work, not a pretty one and nothing you'd want to brag about. I went to the restroom in the basement floor of the building I worked in (working for a Big Ten University in Lansing MI, yeah, that's a hint). One of the stalls had a lock that didn't work so I never went in there, until this day. Little did I know that the toilet also gushed water from the flushing handle, when it was flushed, and water was always pooled up around the base. Seems that most of the other women in the basement knew this and knew it for at least 6-8 weeks (according to one employee) but no one had thought it made any sense at all to report it. So I use that stall and walk out and fell flat on my face on the tile floor. Well, not exactly flat on my face, I was trying to keep my head from hitting the floor and I wear glasses, so I was actually thinking about that on the way down too, and tried to break the fall with my hands, slipping at an angle so that the greater part of my weight was on my right. My entire body was vibrating the fall was so fast and hard. I was taken to the University's clinic first, for XRays so they could do their first steps to cover their ***. And then had to go home, I was still so shaken up and still vibrating from such a jarring blow. I had just had knee surgery a few months prior and had my last appointment where I was to be released from care the following weekday.

At my orthopedist appointment I find out that I had re-injured my left knee and would have to be in a brace for another 6 weeks and because I begged, my doctor allowed me to get back into the pool, if I promised to not use my legs, no kicking, only arm pulls. I swam laps every day for about an hour and had done so for almost 25 years, so this was huge and I was excited to get back in the pool. I dash off to the pool with my new brace, jump in and can not raise my right arm to pull even once. I had torn my labrum and of the variety of tears possible I had a SLAP tear, the tear that absolutely required surgery and would never repair on it's own without that surgery. So I go in to have that surgery. The usual visitor appear bedside and the anesthesiologist comes and tells me about the surgery and that it is very painful, explaining that he doesn't want me to be terrified when I wake up. he also tells me it's a difficult recovery and that I will not be allowed to lie down for several days, would have a bolus for pain and a drain from the back. I"m not worried, Its the same doctor, same hospital and same anesthesiologist who did my left knee scope 6 months ago.

Am I in pain afterward, absolutely, but I was told this is painful surgery AND, I come from a family where, "Get up, you're not hurt." "People are dying and you're not." was the attitude and response I had gotten from my mother (a Post Op Nurse) since I was a little kid. So, I try to be the good patient and I deal with it and don't whine when I go in to see my Orthopd the next week and then I don't complain at the following visit another week later, and I don't tell him how much I noticed that the hair on my arm was growing really long and that my finger nails were growing for the first time in my life and that my arm always felt sweaty. Back then, I was put into a sling with a loaf of sandwich bread sized foam fusion between my arm and torso and I was told to not move it for one month. So then I go in to see my PT for my first visit, fortunately the same PT who worked with my and my knee, so she knew me, she sees my arm and wants to know when my next dr appointment is and then says that's not good enough. She has me call my dr and get back in there ASAP, asks me if I ever heard of RSD and starts work immediately to hopefully counter act the month of damage that has been going on, since I came out of surgery.

Honestly I must be one of the very few people who actually was correctly diagnosed and diagnosed quickly, but even though I had a great PT, I had a doctor who I now think was too hesitant in treatment. He was sweet and kind and very patient focused but he was more worried about being too aggressive. To be fair, I don;t' know what would have worked or if I even stood a chance of remission catching it so early on, I'll never know. My RSD started encompassing my full arm and hand and my right upper torso, including breast tissue. Within the first two years, as my employer accused me of worker's comp fraud, in an effort to get me to walk away and not hold them responsible, forced me to file legal action against them to clear my name and to get my benefits, my RSD began spreading. Unfortunately it was manifesting in my left arm leading up to the court hearing and I was not, at that point, about to halt the proceedings, to go through all the testing and new findings to wait for the hearing to be rescheduled, etc. I wanted it over. So as my RSD spread, I went though Worker's Compensation court, my husband and I got massively in debt, lost a vehicle and cable and everything else you can think of happening financially that can destroy you and put you in a huge bind, while he fought his employer (the feds) to get a transfer to a warmer climate, so that I could stand a chance of becoming more functional, won my case against the Big Ten U and moved to Tucson, while we watched the RSD spread to both my feet and legs, and found out how miserably horrible it is to move and find a doctor who trusts you and that you too can trust. blah, blah, blah. Its the same story everyone else tells.

So I fight Social Security as well and win if you can call it that, my RSD/CRPS is full body, I've seen so many bad doctors, a neurologist who stands there and tells my husband he sees nothing wrong with me when my rt arm is purple and massively swollen and shiny and so sensitive I can't stand to have air move around me. The specialist who threw my empty file up in the air screaming at me, because he didn't have anything in the folder, despite the fact that his wife/receptionist scheduled the appointment based on when she anticipated she would have my files in from out of state. Two doctors who put me through all the tests in office said point blank that I had RSD but refused to give me medication because they didn't know me. SO what, you can diagnose and give medication to locals but not someone you diagnose who used to live some where else?

I woke up about two years into this and had a significantly different pain, all over my body and find out that RSD "opens the door" fro there diseases, in my case Fibromyalgia. Going from being massively active, as in can't sit down, if anything needs to be done anywhere in the house or in my life, to being massively sedentary, it didn't take long before I was told you probably always had these problems but were exercising and eating right to keep them at bay, I find out I have type 2 diabetes, high blood pressure and high cholesterol. Like I need something else to worry about. But reading everyone's posts here I find that I am certainly not alone, many people on this forum have greater issues to mine, though mine are bigger than I can control most days. I am furious, I am depressed and right now I am crying, something I didn't want to do.I haven;t swam a single lap close to 11 years now. I go through spurts where I am able to take a short walk and periods usually the hotter months in the SW, where I can not even manage to handle thinking about going out for a walk, much less leaving the house. My blood sugar has gone from able to be controlled to completely out of control but at least my doctor is working with me on this one. Most of my family has little or nothing to do with me, because I am chemically dependent. I can still only hold my husband's hand for barely a minute, two if I'm lucky. But that's better than not being able to tolerate touching him for nearly 8 years. I haven't worked in over 10 years which makes me furious and ****** me off more than I can say, I have caused us great financial problems, I have kept us from being able to have children, I have kept us from being able to keep or make friends, kept us from being social, kept us from traveling, from having fun from experiencing the outdoors and a lot of the indoors. I hate this disease, I hate what it does to you and I hate what it takes from you.

What do I have to share that's positive, I have not once stayed in bed, spent the day in bed and refused to get up. I have spent a lot of time, years, pushing myself. Often times too much, but ultimately I think that was a good thing. I have learned what my activity limitations are and usually do what I can to keep from over doing it. I have learned how to negotiate and manage my pain. If there is something I/we want to do, we schedule it and plan days around it so that we don't don't miss the opportunities that are the more i important ones to us. Besides refusing to spend a day in bed, I also try very, very hard to take a shower every day. Some days I can't pull it off, but I at least attempt it. I may have days when I take a nap or take two naps, but I do that only when I am unable to stay awake, not because I am in pain. I work really hard to combat the excessive dry skin and cotton mouth, I buy only clothes that are soft and don;'t add to my pain or discomfort. If I look like I"m going to steal something from the liquor store, I let the store manager follow me and waste his time and feel stupid for doing so. But I also go out of my way when I'm in public to thank people , to greet them, to chat with the cashier and tell her I hope she is having a good day and find some common ground, even if its for a moment. Besides my husband, I hardly ever have anyone to talk to. people don't want to spend time with you when you are sick and unfortunately now I've twice moved away from friends I've made, since I've been ill. I've been in Albuquerque now for a year and I know no one. the older neighbor on either side of us, just enough to say hi and that is it. This is the town that you can't trust anyone to know there is something wrong with you that requires that you take pain medication.

I found what I thought was a good pain provider and found out on my visit this week, that the place is corporation run and my doctor is gone, as is the other doctor before him. I need to find another pain specialist now. I have been given new and different meds to try since I've been here and have had a horrible time with finding what works with the new doctor that is as of this week my former doctor, I have had bad, really bad pain. Pain for weeks and months that is reminiscent of the pain I was in the first two years, when I was a zombie and couldn't hold a conversation with my husband, could barely answer simple questions. I hate Albuquerque and suspect that the altitude here is part of the problem I am having. Illegal drug use is so bad here that it affects the medical community in ways I've not experienced in Michigan or in AZ. I have been drug tested 5 times now even though I have only been seeing the specialists art this practice for 9 months. I am literally tested for PCP, among other things. Tested at a cost to Medicare of over $600 a pop and I have never misused my meds in 10 + years. I have never given a doctor a reason to even suspect I need to be drug tested and I've been tested 5 times. I have trouble even getting my regularly monthly prescription because pharmacies don't carry enough medication to meet my needs, even though they know I am a regular. NEVER had a problem getting my Rx filled in MI or in AZ.

So, I am hoping that I can continue to find good advice and common ground here. My Phys. Assistant was beginning to pressure me about having a radial sympathectomy the last couple of visits and advice from people here got me to say NO this past week. So thank you for that. And, I'll stop talking now! So thank you all for that assist and hopefully I'll be able to offer someone else the same when the time comes. Soft hugs, Sylvia

Woah!
 

That was long, sorry. I don't expect anyone to actually read it. But as my husband says so sweetly, "I know, I understand, you have a lot of words you need to use and not much opportunity to get them used." So I needed to use some words, I just had no idea how many, until I hit the submit button. Yipes.:D

Rhonda
 

I have spent the day wondering if I should respond to your last or not, as the last thing I want to do is upset you. When I got my SCS and 16 wires implanted 5 years ago, I wish I had someone to give me feedback. First....These are just my opinions as well as opinions I have read and personally heard from other SCS patients. First, The trial unit was amazing! I was so desperate for a fix, and I believed this was it. My implanted unit Never felt as good as the trial unit. Second...You need to consider the scar tissue you will be dealing with after maybe 2 years as well as the shifting of the control unit, whether abdomen or rear end. Third...I cant give you the exact reasoning, but there is much research being done as it pertains to the DC power to the leads. There is something to do with AC supply that is supposed to be more beneficial. I don't know anything about it, but it was told to me by my Pain Management Doc. Also, I have gone through countless beds, trying to get good sleep. My last was a 6K Temper Pedic. It gave my so much trouble, they made me sign a waiver to not sue before refunding the third bed they tried with me.
I don't want to make this a novel, but I am just saying that you need to take serious consideration before going through this. I have RSD on the Entire Left side of my body. I cannot say, I benefited in anyway from this unit. I have honestly heard of tons of folks that will tell you the same and are faced with another surgery to get this expensive unit removed. I have not even turned my unit on in over a year, as it now causes me major over stimulation of the nerves, and nerve vibrations even after the unit is turned off!! It literally causes severe swelling in my left upper back, causing me horrible wrap around band pain, right into my chest behind my heart. Yes, I have had no less than a dozen adjustments to the unit by Medtronics. I could go on & on, I just wish it could be in person or by phone, so I could answer any question you may have. Finally, Yes, I am trying to get up the courage to schedule the appointment with my Surgeon, to get this thing out of me. My initial surgery was difficult for me, and like I said I have a lot of scar tissue. I won't lie....I am just plain scared and afraid for any kind of a set back. Best Wishes & Blessings to you ;)
FYi...I was injured 11/11/02 in a bad car accident at work, today I am 42.

Cops
 

Thank you for your input. I am scheduled 9-11 my birthday. Yes, I know there can be bad results. I am just so exhaausted all the time from this burning and numbness. Your feeling toward this is the same as mine in regards to rotator cuff repairs. I shiver when I hear anyone getting that done. 5 years later here I am. God bless

Member Introduction
 

Hi,

My name is Karla and I've been researching TBI the past several weeks with the new information that has been surfacing about football players having multiple concussions and symptoms developing years later.

I began retracing timeline on my concussions as a child and realized just a week ago that the three concussions I had were all within a year of each other, between the age of 9-10 yrs old. I've been suffering from depression, memory problems, blurry vision, and major mood swings.

I'm looking forward to learning more and am interested in knowing if it's worth my time & money to see a physician. From what I've read there isn't a whole lot that can be done; however, I'd be curious to know if the protein connected with Alzheimers could possibly be noted from a petscan.

Sincerely,

Karla

Hi Karla and welcome

You have posted this on our RSD?CRPS forum but it seems you need the TBI/PCS forum so I have made a copy of your post there for you.

here is the link so you can check for replies
http://neurotalk.psychcentral.com/sh...d.php?t=194185

Hi Karla,

Have you looked into cognitive rehabilitation? Like you said it is unlikely that you would fully be able to recovery due to the length of time between injury to now but, I have heard good results with cognitive retraining/rehab. There are even some "brain games" and vitamins that can really improve mental clarity & processing speed.

Good luck,
Tessa

Confused
 

Hello All,

I am very glad to have found this site. In December of 2012 was moving a power pallet jack at work. I tripped and hit the jack into reverse and pinned my foot between the jack and a loading dock. I suffered 17 broken bones, 5 crushed bones and did massive damage to my lisfranc joint. Foot was broke clean across into 3 pieces. my toes were displace 11 millimeters to the right of my foot. From the second the injury occurred my foot felt like it was burned to the bone.

I knew right away that the pain was not from my breaks but was from something else. I just didn't know what. I had surgery last January and they screwed my foot back together. Through all my treatments I kept telling the doctors I could understand if my foot hurt but I could not understand the burning. In June I found out that my first surgery did not take and that I would need to under go another surgery. They are going to fuse my foot from the ankle forward, try to replace my cuboid bone, fix my arch and try to reset my foot into its proper position. the new surgeon in passing said I had RSD.
At the time I gave it very little thought. Now I have started researching the CRPS. It was like a slap to the forehead. I now know why I have all these crazy things going on and no it is not in my head as some of my doctors suggested. I have now put together a awesome medical team and aggressively treating my CRPS. I am on Norco 7.5s (allowed 6 a day but try to keep it at 4) Fexerol 10mg 3 times a day, capsaicin cream and Clorazepate 7.5s 3 times a day.

I would recommend the Clorazepate to every one I go from 4 to 6 Norcos a day down to two when they put me on the Clorazepate. Here in is where I now I ask you all for some advise. If I have my next operation now I lose the last two months for my one year mark and thus greatly reduce the chance of remission. If I wait my foot could collapse,we are not sure how long it will hold together. Ad again if I wait and do go in remission surgery could put me right back to where I am. Also most likely doing surgery will stir up my CRSP worse.

I feel so stuck and do not know what route to take. My CRPS has been on the move lately also. It is now on my ankle and calf. When I was told about having it, it was only on a small portion of my foot. :confused:

Freebird36
 

Hi i am Mike 36 from NZ I am single after a divorce with my wife
which happened not long after i got crps it started with RSI in my elbow
and then spread from there i posted a poem in the poems thread it gives my story. I enjoy fishing and photography the too things i can still do on good days
I have read alot of the other poems awesome too read them it makes me feel i am not alone as i shed a tear writting this. I have bad depression which i am going to see about this week i think i had it before crps and its time to deal with it as i have learnt i have to deal with things so i can deal with the crps easier
Maybe bipolar which freaks me out like i dont already have enough to deal with with crps

anyway sorry got carried away there this is me i hope you let me in

Rock on Peace out
Mike the Kiwi.:)

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:

:Wave-Hello:

Welcome to the group.

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

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

:)

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.

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

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! :hug:

HI Adalaide,
WELOCOME to our group, as Az-Di said the people on here are just wonderful & Amazing people who are all more than willing to help weather its with info or support we all know what its like since we all have this demon. I myself have Generalized RSD (full body) June will be 10yrs for me :eek: I know all to well of the frustrations & bulls*** from doctors saying it's all in your head NO ITS NOT & your NOT crazy They ARE for not listening to you! I myself went 4yrs before I was finally diagnosed @ the RSD Foundation in Tampa Fla. At least now you have answers even tho it's not the greatest answer its at least a start. We all know exactly what your going thru since we have all been there & deal with it every day as well. I agree w/Az-Di also about doing research, learn as much as you can about it & feel free to ask questions on here everyone is really amazing honestly weather it's helping eachother out with info or just listening when one of us is haivng a bad day/week so you have @ least that as a positive :D I am sorry you have this demon (rsd) but if there is anything I can do, questions I can answer etc plz let me know take care & again welcome to our wonderful group!

Hi Adalaide, ditto to everything said by AzDi and Heidi. My surgeon didn't even explan what was happening to me. I had to figure it out for myself. My physical therapists are the reason I am able to walk today. Move the affected extremity as much as you can. Get into a pool too. I wish you wellness ~Lottie

Thanks. (I'm a Heidi too! It's such a great name. :D ) It's really helpful to know that I'm not alone. I have a super amazing husband, but my network of friends has dwindled to near nothing because of my inability to go out and do things like I used to.

I'm in Utah, so I'm not off in some no man's land. To the best of my knowledge I've been referred to a good doctor, but I don't have a high opinion of doctors. After it taking more than 30 years for a celiac diagnosis and now this, I never expect more than functional stupidity from doctors. It helps keep me from being disappointed and once in a great while I get to be pleasantly surprised.

Newcomer
 

Hi, my name is Maddy and I've had RSD for over 4 years now. My upper right side is affected from a very badly broken right arm. I've never been able to recuperate the arm because of the RSD and therefore my arm is quite disabled because of it. My pain levels go quite high. I'm almost never out of pain. Because I live in a small city, there is nothing here to help me with this condition. My doctor just writes out prescriptions for more pain meds from time to time (percosets AND two different strengths of slow release Oxycontin).

I do a lot of research online, but the things that interest me, like Transcranial Magnetic Stimulation. or t.D.C.S (which I found out about on this site!), I cannot do because of having a pace maker.

I don't really want to do a whole history. I just want to say 'hi' and 'thank you' for all the knowledge everyone offers here.

My latest research is about the newly released drug 'Zohydro ER'. If anyone has info about this, I'd be grateful.

Well, on to more reading here on NT.

Blessings to all,

Maddy

Tales from the CRPS
 

Thanks for the warm welcome, all!

It's such a relief to have people who experience all the craziness associated with this mess. My family and my sweetheart are beyond supportive, but there's just no way they can ever fully understand.

I'm 28 and was diagnosed with CRPS after a labyrinth of pain specialists and PTs and orthos, yada yada yada. It was a simple game of laser tag that took my life away and replaced it with this sizzle-foot and a hot pink cane. I had a successful SCS trial in September, but when I went for the full installation in November I didn't see the same relief. I've actually had to turn it off because now it adds to the pain. Not cool, man.

My "multidisciplinary" team includes a balding, yet pony-tailed therapist who urges me to calm myself by tapping my forehead over and over, a chipper blonde PT who could be a Cheerio on Glee, a ghost of a pain management specialist who floats into our appointments for 2 minutes, and a genius neurologist whose calendar can only book 6 months between appointments. Now I appreciate a good, kooky character in my life, but to have them responsible for my pain? C'mon. Thank goodness for my Primary who understands the "Care" that's in his title. It's been like herding cats trying to figure out how to get them to work together, and they all seem to be throwing different medicines at me. So 1) Does anyone have suggestions on who runs point in their care team? A neurologist? Pain Management? Primary? 2) Does anyone have a medicine combination that really works for them now? I'm allergic to NSAIDs, so anti-inflammatory meds are unfortunately out.

I'm really looking forward to meeting you all and finding the funny wherever we can!

Hi- I am Jewl
 

:o

I have never posted anything before so if I do something wrong just laugh- I know I will! I have had RSD/CRPS for 2 1/2 years and so far have it in both of my legs. Sometime I will tell you about the story of how it came to be in both legs, it's strange and is kinda funny, but not today. I try hard to stay positive and desire to go back to work everyday! I can share funny moments such as the following;
We were at the beach and I wanted to walk into the water. Would you know that it took me 15 minutes to reach the water with my Husband holding tight to my arm. I was so amazed and baffled with the unsteadiness of my (one leg at the time) and how my feet shifted with every movement. I remember thinking, "Wow.. sand can be really hard to walk on"! Once we got to about waist high in the water I noticed the beautiful blue-green hue as every wave attempted to reach up as if to touch my face with the smell of salt water. While we were in the water my Husband thought he saw a Sting Ray and I immediately without thinking I said, "I don't need a sting ray", and turned and tried to walk back to the beach on my own. Twenty seconds later I found myself rolling in the waves until I washed up on the beach like a whale and yelled, "Where is my remote control I have fallen and can't get up button"! I laughed for at least 5-10 wonderful minutes and said to myself "make every moment count".

Having RSD/CRPS stinks, there is no other way around it! I am just happy to be able to talk in a way with others that share the same challenges. I am constantly revisiting what is realistic, things that I can or can not do. I continue to have dreams about what I want to accomplish and each day strive to not let some disease define who I am. I feel that to often if we concentrate on just our pain that after a while we loose who we are. I know that I have days that are very painful and I am tired often but I know that by reaching out to you, I am not alone. Thank you for listening or should I say reading this post!

Hello
 

Long Introduction.
 

Hello

Where to start? I am a 27 year old female who lives in the high foothills of California about 40 minutes down hill from Lake Tahoe. Forgive me this is going to be a long post. Four years ago i was in a car accident somewhat of my own cause...

I had been having car issues where it would just spontaneously lose all power including lights, a computer issue I later found out. That morning my shift at the deli began at 5 am so I was out on my way to work . At 4:50 my car lost all power on the spiraling off ramp , it was very dark as the moon was only a little more then half full and I was afraid I was going to be plowed into if I left the car on the middle of the off ramp like that. So being the 180lb, independent, belly dancing, weight lifting, horse training, two jobs and college girl I was. I decided to push the car the rest of the way off onto the thin shoulder of the off ramp.
This off ramp spiraled at a tilt like a race track and I was very close to having the car all the way on the upper shoulder. So I put it into neutral , opened the door and began to stand in the lee of the door with one hand on the steering wheel to direct the car. I had done this many times before and didn't think it would change my entire life. It did. The car rolled back on me dragging me pinned by door and car frame down the steep grassy knoll that made up the back side of the spiral. If the car continued its path I would have been dragged out onto the freeway below , I had the brief thought I was going to die. I had luckily landed partially inside the car on the floor board beneath the steering wheel. Nearly dislocating my right shoulder I was able to engage the emergency brake and the car slowly came to a stop leaning its weight on top of my pinned scissored legs.
I must have done some good deeds in my past life because that day , I had the most luck and the worst . My luck continued not only had it rained the previous day, the grass was waist high to buffer me and I also had my cell phone in a buttoned jacket pocket. I was able to call 911 emergency. I was hysterical at first the dispatcher didn't believe me and actually hung up! I watched as cars headlights skimmed past briefly lighting the ceiling of the car. Somewhere between one breath and the next I began to panic. Somehow I wrenched myself free from under the car, I couldn't stand. Finally the Dispatcher called back and believed me, she sent the ambulance finally , telling me not to move, to late.
The paramedics arrived after what seemed to be forever. It ended up being the same ones I made breakfast for every morning. I was in shock but Brian the youngest paramedic made an inside joke about how my thunder thighs saved my ***. He had been in the deli with his comrades and they found out he likes them chubby, somehow my upturned rump was chosen as an example of the body shape he liked. It broke the shock I laughed briefly then began to cry all the way to the hospital.
At the hospital they found no lacerations or bruising, visually checked my pee for blood and sent me home , no xrays , no nothing. Which later helped me a little as i used it against them to reduce my bill with them. I took the pain killers and had my dad take me directly to the impound as I knew I would bruise and be immobile in pain the next day.
I spent four days on my dads couch then went home when I finally could walk. after another day or two I went to see my doctor Wy ling Go, and was given a brief exam bruised from hip to toes on the left outer side, go home say off a week your young you will heal. Week after week i went back for three months I still was in more pain then I had ever felt, the swelling was immense and ice hurt like hell. More symptoms followed eventually I gave in and selected a cane to help my unsteady gait.
I quickly lost my job, my fiancee, my apartment, I racked up debt after that trying to get treatment with out insurance. I moved in with my father who lived with his girlfriend eventually even that went sour even my own family didn't believe me. Some days I was mobile others bedridden. I changed doctors saw specialists even was homeless for two nights before my grandmother took me in to sleep on her floor in her one bedroom studio granny flat.
I searched for jobs everyday but its very limited when you can't stand for more then an hour and only have a high school diploma. So I went back to school trying to finish my aa. I was in more pain then ever and i had lost even more my independence, my figure, it seemed I even lost hope .I kept trying new things my new doctor wanted test and more tests. I was in the whole for 12k I had no medical insurance and no relief from the pain but hot showers. I slept less then an hour straight at night. I lost hope and nearly tried to kill myself. I learned to avoid pain causing things, exercise, dance, stress, beans, and walking.
Eventually though I found love which led me to a job but by that time it had been two years since the accident. I had made no headway to a diagnosis or even a little relief after my suicide incident they put me on flexeril, naproxen and one 500mg opioid at night time. These medications made it possible to go to work but I was useless afterwards it seemed to take all my toughness, endurance and after work i gave up to the pain.
My boyfriend and I moved in together, worked together, cried and laughed together, over the next year. I don't know what I would do without him. I am unable to live alone, I cannot do ...so many mundane things even when I was off for a few days in a row.
February 2013 I was driving my monte carlo and we were plowed into from behind. Totaling both cars and sending me to the ER not only was I out for a month with a severe concussion but my leg was worse then ever it even seemed to spread. By this point I had changed doctors so many times did so many test it was unbelievable and I still had no diagnosis or even a clue what was wrong with my leg. I developed a deep fear about driving not that the pain would let me some days anyways.
Finally the ACA went into effect, I got kaiser Permanente February 2014. It is set up like socialized medicine in japan it is everything all in one big hospital like building. I went in to see Dr. Z( insanely long named doctor) unfortunately my pain was around a 5 that day on the typical 1-10 score, five is a wondrous day for me it is the lowest pain point i have with the exception of when i get sloppy drunk. Dr. Z accused me of drug seeking.
A week and a formal complaint later I have a new doctor Dr. Goodil and she on my very first visit after listening carefully, reading the summary of my medical records and asking a few pertinent questions diagnosed me with RSD. A condition which I had heard of only once before with the second physical therapist I saw but it fits perfectly and even explained the giraffe pattern (livedo reticolaris) that comes and goes on my thigh. After four years almost to a day I am finally getting treatment that may really help. Then thankfully I get laid off... why am I grateful the side effect of my new medication would make work impossible.
Dr. Goodil has put me on gabapentin which am a slowly increasing by one 100 mg every three days. I am now at 1200mg and have now seen either a further spread of the RSD from low back hip knee to calf and ankle. Or the possible side effect of edema it is so hard to tell because the ballon tight swelling is a normal symptom for me just not normally that low. The gabapentin has been helping me sleep by its other most common side effect after I reached 800mg I had the first solid night of sleep in four years. I sleep well if i can get to sleep in the first place. I still take the flexiril, naproxen and opioid as they help the other symptoms. The clamping muscle spasms, the sharp stabs and some of the pain at bed time for now until we get the dose right for the gabapentin I live like a had during the days before in pain sometimes debilitating pain.

good morning Llynnyia
 

Welcome to Neuro Talk. You will find many people here who have RSD. This awful condition happens all to often with severe injury. You have been through so very much. You remain brave. I am glad you have someone in your life who cares. That does make anything we have to deal with better.

Ask your doctor about Ketamine infusions. Sometimes this is used for RSD and has gotten some favorable reports about it from those who have tried it. It was first used on our Military for severe injury. This started the research going. Others on this site may be able to help you too.

You found the right place to go for support and friendship. I too came here not under the best of circumstances, and just never left. Many good people helped me through my own ordeal. Be good to yourself, and find reason each day for some joy in it. ginnie:grouphug::hug:

Thank you , Right now I feel so lost I had fought so long for a diagnosis it feels weird to know why. I feel as if I should be saying what now or like the diagnosis would bring a possible cure, then I find out rsd has no cure but sometimes mysteriously goes away.

:Wave-Hello:

Welcome. I'm sorry you have this monster RSD. This is a great group to be a part of.

Thank you. It really does feel like a monster some days like today/ last night no sleep because pain lv and no reason for this flare up.

Hi Llynnyia,
So sorry to hear about your ordeal & all you went thru but glad you found us here. I myself went through many doctors & 4years of no answers until I moved back to fla from WI & went to the RSD Foundation in Tampa, in all it's been just under 10 years for me & I only a year ago found a doctor that I am happy with, who listens & knows about RSD which is important. I hope things continue to look up for you & you have a pain free or managable day

I feel like a bit of a whinner when i compare myself to some of you, your conditions have spread so far and it is so crippling. I feel bad for talking about my one leg, hip and lower back, when some of the members here have it in thier entire body:(.

Hi Llynnyia
 

Hi Llynnyia, all pain is awful. Never feel bad with expressing yours. This is what the site is for. We come together with many different hurts. We find some emotional healing and friends to talk to. The RSD place in Tampa has a good reputation. Maybe you could visit Tampa, and see if there is some additional help for you. ginnie:hug:

Oh hun dont feel bad for telling us & sharing about your pain, we all hurt & your hurt is just as bad as mine or someone else's hurt so please dont feel bad we are here for support as we understand completly what your going thru. I hope you & everyone is having a beautiful day!:grouphug:

New to this.
 

Hello all.

I think that I actually joined this forum about a year ago but I've neglected to actually keep up on it.

I was involved in a hit and run 4 years ago and I was the one that got hit. I was on a motorcycle. Tore the **** outta my right calf. Blood, muscle tissue, and fatty tissues were all over my bike. Somehow managed to get the bike off me and made it to the closest house to call for help.

I've had RSD in my right calf for about 4 years now. I'm somewhere in between stage 2 and 3 (I lose motor control sometimes but not all the time, mostly at the end of the day). I use a cane when I need to but I'll muster through it because every time I use that damn stick I feel like I've let it win. I don't let it control me. Not saying that I run a mile every morning but I work a lot and I try to keep my mind busy. I have a couple of really good friends that actually look out for me.

Just recently I just gave into getting the handicap tag. I didn't want it one bit, but my friends finally talked me into it. I hate the staring. It's like "Yeah I *******have one, I actually need it, so **** ***

As far as the "Treatments" I've only really done a few blocks and different medications, Which I have signed off on both of those because of the kind of work that I do. (I'm a master luthier, so in other words I build guitars from scratch. I work at two custom shops and I teach others how to build.) there's a lot of woodworking involved with a lot of sharp tools, which is why i signed off on the meds. I don't need to be operating a band saw that could take my hand or even a few fingers because I took cymbalta or lyrica. so yeah **** that ****. But I do smoke weed, not all the time. Kind of a end of day thing as well.

What am I doing here? Well....I've decided that I need to talk to others that have this curse. Hopefully make a few friends. I have some pretty awesome friends but they don't have this. And I can't expect them to understand. And to be completely honest. I'm tired of having to explain it over and over again....

I like that to think that I'm a pretty cool dude. Like I said before I work in two guitar custom shops and I play in a band (bass). For the most part I'm pretty easy going. I've been told I'm big teddy bear (I'm 6'6" and kinda fat, so yeah I'm a teddy bear lol!)

Well that's my story, I'm going actually make an effort to be involved in this forum. I wish you all a good day.

OUCHY I am sorry to hear about the hit and run, did they ever find the other vehicle?

Explaining again and again is the worst, I kinda blew up at my irl friends the last time I saw them about the you can do it bs they shove at me.

I am glad you can keep working at a job you obviously love. I wish you could have some pain relief in the mean time though, have you tried lidoderm patches they never supposed to hit the bloodstream so no cognitive effects.