Hello to u all I hope ur all havin better days..I have not been on here for awhile cuz Ive been laid up in bed only gettin up when I hav to. I hav been in tears tryin not to scream from pain & tonite is no better I really dont know how much more I can take of this..Anyone that has any advic er plzxx lay it on me cant take many more days/nites like this

Hello Heidi,

I'm so sorry you are having a rough time of it - I hope this flare passes soon!!

What kinds of things are you doing to help cope with the pain/depression/frustration?

I'm thinking you might get more support if you post this on a new thread on the main forum.

I know this sounds impossible when pain is high but, if there is anyway you can get up and even just go sit outside you will be happier. My doctor has told me more than once that the minute I stop moving I won't want to live.. I fear that so, no matter how bad the pain is I find a way to get up and out. I have had 6 recent hip operations so I can sympathize with your hip pain; have you tried taking Celebrex? Celebrex can help with the arthritis pain and reduce inflammation from CRPS.. might be worth asking your doctor for some samples since I see you mentioned you don't have insurance at the moment.

Can you get on state funded medical? How about reaching out to local churches or other services that may be able to assist in one way or another?

Dig deep.. gotta find something positive, something you enjoy that can bring a little sunshine to your face. Hang in there Heidi!!

Wishing you a better day,
Tessa

Sorry you are having such a hard time with the pain. If you can, ask your doctor about Ketamine infusions. There has been some success with that from trials with our military. Some have had a remission. There is also a ketamine compounded cream that may take the edge off. Bio freeze is along the same lines. I don't have RSD but PN, and I use all the above. Hang in there, and I hope this flair, goes away. ginnie

Hello, I'm 24 and have had RSD for 6 years, though I'm blessed to have an incredibly mild case. (Sorry, this is so long. The last paragraph is a kind of summary of where I am now.)

I've never exactly been what you might call coordinated. I think my older brother got my share of grace and athletic ability as well as his own. Despite this, when my best friend invited me to go snowboarding for her 18th birthday I went. I'd never been snowboarding or skiing and new that I'd hurt myself, but I also knew that I'd have fun. I reasoned that we can't live our lives scared of getting hurt or we won't have any life at all (I mostly still agree with this).

As you can probably guess, I did get hurt. I've had a lot of practice falling down in my life (see above comment about my brother stealing my coordination) and mostly manage do it quite well, but at one point I fell to my knees and my right knee hit a hard patch of ice. It hurt like crazy, but I was fairly certain I'd only bruised the bone and not broken anything. I iced it overnight and stayed off the slopes the next day while my friend continued to barrel roll down the hills and received nary a scratch.

At my mother's insistence I went to the dr and he confirmed that I had bruised my kneecap. That was pretty much it for the next 6 months. My knee continued to be swollen and my pain didn't go away even a little bit. Most people would've gone back to the dr at least once in that time period and I admit that I should have too, but I didn't want to complain. See, my dad has lupus and has for most of his life. I know a lot of people with lupus who just sit around and do nothing because they hurt, but not my dad. He goes to work everyday (his job is very physical) and when he gets home he keeps moving and being physical until goes to bed. I reasoned that his pain was much worse than mine and I had no right to complain. I should also mention that this all occurred at a time when I hated myself and my long-term goal in life was suicide because I felt my existence only hurt those around me. (Don't worry, I'm better now. I feel neutral towards myself. )

So 6 months have hurting myself I went back to the dr. He sent me to an orthopedic specialist who proceeded to tell me that despite my inflammation there was nothing wrong with my leg and I was only faking it to try to get drugs. He admitted I was doing a thorough job because the muscles in my right leg were atrophied and sent me to physical therapy. I've never been a big fan of going to the dr, oh sure they're necessary, but you don't go unless there's something really wrong like you're arm fell off. So as you can imagine I was done with drs for awhile. I went to my physio because I've been raised with a lot of respect for the field and atrophy is never good, though I grumbled about it being a waste of money (my mom is a personal trainer and would have had me doing the same exercises anyway now that the atrophy had been brought to her attention). I do believe the physio helped, though it hurt and life continued. I graduated from high school--though I was in enough pain that I really don't remember much of my senior year--and got a summer job working in a factory.

That was horrible. It was great money, but I was on my feet most of the day lifting heavy things and being hit on. Everyday, I'd get home around 3 p.m. and go to bed. I just didn't have the energy to do anything else. And so I returned to the dr. He decided I had patellar something or other (forgive me, it was several years ago), basically the muscles and tendons on one side of my leg were stronger than on the other side and were pulling on my kneecap (though at this point most of my right leg hurt). He sent me back to physio.

As stated above, I strongly believe in physio, but first it's important to know what's wrong. This misdiagnosis and the treatment were bad news for me, largely because they decided to treat my pain with cryotherapy--in other words, lots of ice. Ice is not good for RSD. It's like treating an oil fire with water. I got worse and my RSD began to spread to my left leg. For the next couple years I continued to go to drs and they continued to play "pin the tail on the diagnosis". They, and I, dismissed the pain in my left leg as stress from babying my right though since my first round of physio I tried everything I could think of to stop babying it.

I did get lucky in one respect though. My depression had reached a sort of critical mass. I didn't want to do anything, I didn't even have the motivation to think of killing myself anymore. I was failing most of my college classes even though I'd always done well in school. After 8 years, I finally had to admit that I was depressed. (My mom had been telling me this for years, which is why you should always listen to your mother.) After an ineffective attempt to treat this biochemically and then a misbegotten stint on prozac, I was proscribed cymbalta. I believe this is the reason my RSD is still as mild as it is.

Still, being in pain all the time and not knowing why took a heavy toll on me. About two years ago I decided I only had one option. There was something severely wrong with my leg and no one could figure out what, but there was a simple solution. Get rid of the leg. I didn't want to cut it off, but I made my peace with it. I began to look into voluntary amputation and there was a light at the end of the tunnel. Just a little longer and I would be free. It wouldn't be an easy adjustment and my family and friends would never understand, but I wouldn't be in pain anymore. I could truly start to live again.

It isn't easy finding a dr who will not only agree to cut off what seems to be a perfectly healthy limb, but will do so quietly without alerting your father whose insurance your on and has worked at the local hospital longer than you've been alive. Without HIPAA it would have been impossible. Still I spent most of my workday scouring the internet. Then one morning I came into work to find the new issue of Time magazine on my desk waiting to be added to the system (I was working at a library at the time). The cover had the words "Understanding Pain" written across it in big red letters. I read the article hoping it would say something about voluntary amputation, but instead found the first description of RSD I had ever heard. (This was the March 7, 2011 issue if you want to read it.) It sounded a lot like what I was dealing with so I made an appointment with my dr.

And so, 4 and a half years after my initial injury I was finally diagnosed. I had told myself for a long time that if I only knew what was wrong I'd be happy. Just knowing was more important than treatment, but I can't explain what a blow my diagnosis was. For 4 years I'd put up with this. And just as I was losing the last vestiges of hope that I would ever not be in pain I had found an answer. So simple that I hadn't seen it at first, but my problems were about to disappear. I was going to be the happiest amputee in the world. And then all of that was ripped away. My dreams of a pain free life went up in invisible flames. I was crushed; crushed finer than the smallest grain of sand.

In addition to my longstanding battle with depression and the demon of RSD, I had to learn to cope with my guilt and confusion. I should be happy that my leg wasn't going to be amputated, but I wasn't. Luckily, humans are great at adapting and I did eventually.

So now I'm here. I'm 24. I have RSD in both legs from my thigh down to where it's just starting to spread into both ankles. I often get muscle spasms in my upper body (myoclonic seizures/jerks) as if I'm shivering and just can't stop. The only dr I've found who seems to know anything about RSD wants to torture me every 6 months with unnecessary EMG/NCV tests so I'm not really seeing a dr. I still struggle with depression, but am managing it most days. I'm trying to save up to go back to school and develop at least a grudging affection for myself.

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.

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

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.

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.

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