hello all. if youve got the time, my somewhat long story follows. to start, i have just been diagnosed with crps and it is terrible. does anyone have any advice for how to get this under control? it would help so much. i must say, i have never heard of this. i am an avid reader and love anything to do with medicine, etc and in all my years of reading i have never heard of crps or rsd. anyway, my story follows.

first, i am in so much pain all the time. it is so discouraging. i am 35, married with a sweet baby girl that just turned 1 last week. this crps CRAP has changed my life, and me as a person and not for the better. aside from the pain, i find that i am more agitated and angry and i snap at my wife and i hate it. she understands and trys to help me but im always hurting.
i need to rant before i get to the story. i feel like 99% of the medical 'professionals' just dont get it. i know they are very knowledgable in their field, including therapists and such but as much as they know, they will NEVER know what it actually feel like.

ok, so on march 28th of this year i amputated my ring finger off at work. it was brutal. i work at a foundry and i was doing some cutting on a large band saw. the saw took a piece of my glove and took my hand in. i lost my left ring finger at the pip joint and it ripped my middle finger from the pip joint to the tip, down to the bone. shredded my muscles, nerves, everything.
as soon as it happened i knew i lost my fingers. i was afraid to look but i knew. i asked the guy i was training if i just cut my finger off and he said yes. he threw me a rag that was full of metal chips and such and i put it over my hand. he picked up my finger and we headed to the hospital. on the way there, i called my wife, who immediately broke down crying as i looked at my finger sitting on the dash.
so i get tuned up on whatever pain meds they gave me and headed to surgery. i dont remember much of this. i am left with a nub of a ring finger and a complete middle finger but it has a nasty scar and pieces of my bone are gone. metal chips are still in my fingers.
so its been 5 months and the pain is terrible.
as of right now all i take is 30 milligram roxicodone but i take a lot. i am waiting on some compound ketamine cream to come ups. i didnt even know they did that. when the pharm called i thought i was getting scammed at first but they knew info like my doctors name, my name, and some other things.
so even with the roxi, i am in a great deal of pain. i was in active OT up until last week but the doc pulled me out cause i am not 'medically stable'.
my finger tips are hyper sensative to the touch, the pain is unbearable, and my grip sucks. with my right hand i can pull about 148lbs of pressure and with my left, i pull about 18lbs.
im currently on workers comp, it sucks dealing with that system but it is what it is. i have a lawyer and we are making moves but that is another issue.

my doc tried me on neurontin and it didnt help. then she put me on lyrica. it didnt help and i got violently sick. some sort of adverse reaction or something so i had to come off of it. now it is just the roxicodone.
i have always had a pretty high tolerance for pain medicine, and for that matter pain but i dont understand how something supposedly so strong, can do so little. dont get me wrong, it does help. it takes the edge off. it makes things tolerable but thats it.
tell it to me straight please. is this as good as it gets? can i look forward to pain forever?

my doc told my i have crps. i just found this out last week. i was reading through my comp notes a few weeks ago and i saw a notation from her describing my symptoms and it said it was too early to tell if it is crps. well, apparently it is.
now, the symptoms....
it hurts all the time. different kinds of pain in different area and i dont understand.
my pain never goes below a 4 even with the pills. it gets as high as a 9 every day. i never use the number 10 but im sure i could.
my entire hand hurts and even my forearm and bicep. my ring and middle fingers are so sensative. i get a pain that is so deep it feels like it is in my bones. in both of those fingers and even in my hand. then, for no reason at all it will burn. or itch. or tingle. or start shooting up my arm. or my arm will ache. i will be sitting here and all of a sudden it feels like i am getting stabbed in the fingers with nails. i can get any combo of these pains in my fingers, hand, and arm all at the same time or one finger and not the other, etc.
mind you this is not really doing anything. forget about it if i try to put my hand to use.

my depth perception is off. i feel like i have extreme pain in parts of my finger that are not even there. i constantly bump it at home if i reach for something cause as i said, im off.
i have a 1 year old little girl and this has really made it hard for me to help my wife care for here. if you have children you will understand. she is very squirmy and i dont want to hurt myself, or possibly her. i can change her diaper and what not, IF she is in the mood to let me. if she is in her wiggle mood though, kicking and rolling, i cant do it. she has kicked my hand, fingers and the like and the pain sends me through the roof.

i hate it.
i have had to alter everything i do. even taking a shower. i cant wash my hair like i used to cause i can not tolerate the sensation of the water on my fingers. i have had to change the way i do everything.
this has changed me not just physically but mentally. i HATE the way my hand looks. i dont want to see it or anyone else to see it. my wife is like a master at knitting and crochet. she makes me what i call 'nub gloves' that i wear over my stump. this provides me protection but also hides it. i feel disgusting and disfigured. i dont want my wife to see it. dont want my daughter to see it.
i have nightmares almost every night about the accident. my sleep schedule is all out of whack. i seem to be on a rotation of 48 hours awake and then maybe 5 hours of sleep. the pain either keeps me from falling asleep or wakes me up.

now im normally a pretty happy guy. love to laugh and joke but i have changed. i find myself not being as happy. i tend to 'snap' at my wife. not yell or call names just get an attitude. i know i am doing it and i know why. i am tired and i am in pain.
i feel bad for my wife cause she has to deal with me. she is amazing and wonderful and its not fair to her. i could not get through this if it was not for her.

that said, now i honestly feel like she would be better off without me. i feel like i have nothing to offer. i was the sole provider for our family and i did well. im a hard worker.
i made very good money and that is gone forever now. i am not saying i will never work again but i will never do what i was doing or reach the goals i had and it sucks.
i worked in a place that not many people want to work. they are literally afraid of it. they will hire 10 people on a monday and by friday there might only be 1 or 2 left.
i worked as a quality engineer at a foundry. i assumed various duties there. it paid well but it as dangerous but i was damn good at what i did and i liked the work. i had plans to take my skills to the top and i was on the way.

when i went out on comp i had received $5 in raises in 18 months time by assuming various duties there. there were about 350 people working there are any given time. about 15 people in my general department and i was the only person that did what i did.
i was well on my way to more than doubling my hourly/yearly salary in about 2 years time. i mean it WAS happening. not bad for a high school drop out.
this place is known around here for great pay but extremely demanding work. long hours. high risk of injury and IF you get a serious injury, youre kicked to the curb and thats what happened.

when this happened i was into a long shift. i had been there about 14 hours. then in an instant, my life changed. god i hate it so much.
i am not depressed but dont get me wrong... things suck right now.
i was proud of myself. proud for doing the work i was doing. proud for bringing in the kind of money i was for my wife and daughter. my wife was proud of me and it is gone.
im 35 and my wife is 23. she has had a couple jobs but when we got married i told her i would always take care of her. when we found out she was pregnant we decided she was going to stop working and take care of the home and our daughter and i was damn proud of that. it made me feel so good that i was able to provide that.
these days it is not very common for there to be only 1 wage earner. we did it and we were getting on fine. we have everything we need. we had some extras. a little money in the bank. we had toys. my wife and daughter wanted for nothing.
i am not trying to come off as pompous here. just trying to have you understand my physical and mental state.

i mean we are thrifty. always have been, when i say they wanted for nothing i dont mean she had prada purses and huge conflict diamonds. she is an extreme couponer. she enjoys it. we buy new clothes but we also frequent goodwill. we enjoy that also. we were happy with our lifestyle and it made me so happy that my wife could stay at home and our daughter would not have to be in child care 8 hours a day or have us on opposite shifts. i am most certainly NOT one of those guys that feels like the wife 'belongs' at home and all that 1950's thought processes. we made the decision for her to not work together and it just made me feel good.

i guess i am on about that stuff because i dont know where we stand now. i have not found much information about crps.
i do know that i am not going to ever go back to work at the foundry. i dont know if/when i will go back to work but i can guarantee that i will never work in my field again, nor will i make the money i was.
that means i am breaking my promise to my wife. she is going to have to go work.
i dont know if i am going to be able to get on disability and if so how much will i get. when it will start.
i have a lawyer and i am going after the foundry for negligence(thats a long story with a long explanation but i assure you, they were negligent)

sorry to rant..... back to the pain.

how am i supposed to handle this for the rest of my life? am i just supposed to rely/depend on heavy narcotics? am i supposed to get used to the fact that i am going to be in constant pain forever?

what do all of you do? how do you do it? how do you function?

how is it possible you are able to work and earn a living while in this kind of pain, while taking these kinds of medications?

i am so sorry for the long thread but i need someone to talk to. i am reaching out here because i am absolutely lost. i have no clue on what to do.
make no mistake about it, my family will always have food. they will never be hungry. we will never be without a place to live. i will never allow that to happen.
i cant promise that i am going to do it myself like i was before. i will never be able to support them the way they deserve now and its because of this.
i feel robbed. this should not have happened to me.
not trying to throw a pity party here but its true. im a good guy. i work hard. i love my family. i did work people walked out on. i dont drink. i dont use drugs(unless prescribed), so what gives? why cut me down like this?

if anyone can relate, i am asking for advice and suggestions. i am open to almost any and all things. with respect, no religion. thank you in advance.

please tell me what kinds of pains you have. how do you get rid of them? what medicines could possibly help me? what kind of therapies? surgeries? ANYTHING...

please and thank you.

i am lost and i am scared. i am in so much pain and my earning potential is gone. my employer tossed me out with the trash when i got hurt. just like people that work there said. just like people around town said, they did it and it makes me angry.

on a final note, i will tell you one thing i am tired of. i am tired of people(not you ladies and gent, as i am asking) comparing their accidents to mine and saying things like 'the same thing happened to me'....it happens all the time.

i will be talking to someone and they will tell me how they are doing, 20 years after the same thing happened to them. funny though, i look down and i see 10 fingers. i see no scars. oh but they were in the kitchen cutting chicken and cut the tip of their finger off by the nail way back in 1975 and they made it through. that bothers me so much.
how is that the same as having their fingers violently ripped apart in an industrial accident? you know
maybe i am taking it wrong and they are just trying to give sympathy, but it bothers me.

You poor guy. I'm so sorry you have to deal with this.

I have to apologise straight away because I have to go to work soon and didn't have time to read all of your story, but I have to answer the first point - I got CRPS after a minor knee operation and had horrendous pain for months after, but I have seen that pain change and lessen over time, and you have to believe that yore will too. At one point I could barely move at all and every moment was pain, painkillers didn't really work, physio was horrific, but at two years in I am working again (part time), walking better, out of my wheelchair and crutches, and generally able to do and enjoy more. I still have bad days, but generally things are much improved, despite the fact that the CRPS has spread to my left side.

I remember that first year all too well. Dark despair and fear of the future, the 'why me', nobody understanding it (or me), struggling with doctors and the fact that nobody in the NHS seemed to have heard of CRPS. And always the unending pain and misery.

There are certain things you have to do. You have to practice coping until you can deal with life easier - silly things like accepting that your family have no idea what you are going through, and that it is not their fault that they cannot be thinking of your CRPS all the time. It is natural for even family to just run out of sympathy at times. They don't know why you aren't getting better, and it takes time for them to learn how this disease affects you. Just keep talking to your wife, and explain how you are being affected and how you feel. Ask her how she feels too - she will be frightened for the future, for you, she will be scared by the pain you are in that she cannot help the way she wants to, she will be wondering how she can deal with it too. The fear affects everyone, and talking about it helps a lot. You can find a way through.

Read the good sites on CRPS and avoid anything scary or negative. Remember that support sites inevitably contain more of the sufferers who are having a crappy time of it - we come seeking help and advice and support. The folk who are living their lives pretty well have less need of it. Show your wife some of the clinical descriptions of CRPS and encourage her to read about the condition herself - it will help both of you.

Ask to see a psychologist to help you come to terms with what has happened to you - but if they make you feel in any way responsible or negative about yourself, then walk out the door and find another one. There are poor practitioners of all the medicinal types out there

Keep the hurt limb moving gently as much as you can, and don't ever use any ice near it. Avoid extremes of temperature, and try to do things that distract you from the pain. Take 500 mg vitamin C daily (it's been shown to reduce the risk of spread) and try using unperfumed Epsom salts as a lukewarm soak, or wrapped in a damp cloth when your skin burns. Keep your body active when you can - over time, inactivity encourages spread and weakens your whole body. Don't do anything that spikes your pain, and listen to your body.

Meditation can really help - I was very skeptical about it, but it is very true that when we are in constant pain our bodies are tense, and it makes things worse long-term. You can download mediation tracks from iTunes for free, or look for something like the Mindfulness course of meditation training. I hadn't realised how tense I was until I actively tried to relax! It really helped with the pain and my mood.

Try to find some good thoughts and some positive mood when you can, and never ever give up hope that things will improve. I really hope you see some improvement soon, and keep fighting for your treatment and care. Assume that all doctors etc you see know less than you about CRPS until you are proven otherwise! Keep reading and learning about it, it's your best protection against poor care.

Really really good luck. Sorry if this has sounded lectury, I never meant to type this much and have to dash now!!

Take care of yourself and your family. Better times will come again

Bram.

thanks brambledog. didnt sound like a lecture.

what i know i need to do is move my fingers more. it hurts so bad so i just dont do it.
my wife has been wonderful thus far but i know her patience is going to run out. its only natural.

Hey bro, first off I'd like to thank you for your honesty about your whole life,u painted a very clear picture if what your all about.and that's family.im sorry for you and can relate to your accident at work.this isn't about me but I'm a union iron worker that fell two stories and rsd took over my life.in nj we get 80% of our salary .soo that helps out a lot while going thru rehab,hopefully it's pretty close in Ohio .you should be able to get disability too.you should get it also,make sure your lawyer is a good one .its possible to get a nice settlement for your injuries and pain and suffering.as for your medications,roxxys s good for short term pain/ breah thru pain .but you need a long acting pain med to go with it.i take methadone with mine,down to 80 mgs aday .methadone works great and long lasting,your body won't crave for more meds like only taking a short lasting pain med does,like roxxy ,vicodin,.if you don't like that the duragesic patch is also long. Lasting ,36 hr,but I recommend at least the 50 mcg for you to start.i also take prednisone for my inflammation.i have full body rsd and this helps a lot with my pain and my feeling of being sick from all the inflammation in my body.but my life is a battle,I'm having a flare up now and been on the couch for a week now.i would also get ketamine nasal spray .alot of people have a lot of success with it.i just started but in too low of a dose.100 mgs 3 to 4 times a day is the norm for rsd patients,I'm only on 80 a day.should bet on 3 to 4 hundred aday.i shattered my heel , broke my back and compound fracture in my wrist from my fall,I have full body rsd and totally disabled from it.took 3 yrs to find a diagnoise for me and that's why it spread so much.you were diagnoised early so maybe it won't spread.i know your in severe pain now , u don't need anything else to deal with.good luck buddy .

you get where i am coming from for sure being an iron worker too. its rough man.
how did the disability work out for you? are you saying you get 80% of your salary for disability?
i could live with that.
as far as settlements. i already got a small piece through comp but my lawyer said i am entitled to more than what i already got. its hard to navigate through all that without help because they dont tell you what you are allowed.
my lawyer seems to think i am looking at a good bit so that will help. hard making it through the day in this much pain though.
just curious, what did you do at work? was it a foundry or a mill?
it was tough work but i miss it.
it would be nice to have someone to talk to that can relate to not only the pain i am in but the work environment that led us to being like this.
in that industry, there is/was a real good chance that if we didnt have a 2 story fall or cut our fingers off something else would have happened along the way.
we do what we have to do though

First off...I want to say that I am SO sorry for all that you have been through and are going through since the accident.

You've already gotten some good advice and tips. All I can say is keep asking questions, keep reading up on RSD/CRPS, and pay very close attention to what things increase or decrease your pain.

I did want to chime in real quick though and tell you that things can/will get better. Other than sharing some of what I have gone through I don't know any other way to convince you of this.

Let's start off with the fact that I was also hurt at work. Very different field than you...I'm an assistant manager at a big box retailer. But I HAVE been through the ringer with work comp and have come out the other side.

One thing I wanted to ask you is if you are getting any sort of TTD payments from work comp (that's "temporary total disability" which in IL is 60% of my pay but with no taxes taken out)? I ask because if you are unable to work as the result of a work injury then you SHOULD be getting this every week which could help you tremendously financially. The only reason I could think of you not getting this is if you took any sort of settlement from them (which I hope is not the case...but I know from experience how sneaky they can be).

Anyway...back to the getting better thing.

My CRPS started in my left ankle after I was walking and hit my foot on the steel dock plate that "someone" decided to lean upright, on it's edge, against a pile of boxes of pillows. Not as horrifying as your injury...not remotely...but the thing about CRPS is that it doesn't really matter HOW you get it...the pain is just as horrifying regardless of how serious the initial injury was. And I'm not trying to minimize your injury because obviously the brutal nature of what happened to you has added a whole other level to what you are going through that I cannot truly understand. But I can talk about the CRPS pain.

Mine is a long story and I won't bore you with too many details. About a year and a half after my injury (and I was back working at that point with pain at a level 5-6 every day on a nice cocktail of meds)...things got MUCH worse. My CRPS spread to my entire upper body waist to neck including both arms and hands. I was in a wheel chair and ended up off work for a year and a half.

It was terrible...I was unable to stand or walk at all. Literally had to crawl just to get to the bathroom. I was trapped on the couch in my living room for months on end. I had to rely on my boyfriend and his mom to help me get to doctor's appointments and had to be pushed around everywhere. I needed people to bring me food. Every second I was in unbelievable pain. I couldn't wear normal clothes. I couldn't sleep...at all. We're talking 5-15 minutes at a time with hours in between.

Nothing was helping. Then on top of everything else...the meds they were giving me caused serotonin syndrome and I had to come off EVERYTHING.

Then I changed doctors and started at home physical therapy with a WONDERFUL nurse. It was a VERY slow process...but things got better.

It took about 6 months of physical therapy before I was able to walk again. I need a walker (I'm only 29...27 when all that was going on) and a cane...but I am mobile. It took another few months after that before I was able to walk at anything approaching a normal speed.

Now I am back at work, full time, making my previous salary (a little more now after my review this past February). I am able to be on my feet for 9+ hours a day...working 50-60 hours a week. I have had to change the way I do EVERYTHING because I have to use a walker and I am so sensitive to touch and cold. I need to wear gloves and a scarf all the time at work...look like a bit of a freak in 90 degree weather...but who cares? I'm so grateful to just have taken back this little bit of my life.

As far as the pain...it's still really bad. Every second of every day I have pain at a level 4-5 all the way up to a 10. I have a ton of strange symptoms and there are times where I have had to call of work because I literally cannot function. I smallest things can take me down. Last time I had to call off for two days because I got some bug bites on my CRPS ankle and it swelled up badly and the pain was a 10...couldn't walk at all on it. A little bump, someone shutting the door too forcefully, a stray breeze, a bug bite, certain noises, changes in the weather, and so many other things I cannot even begin to list them all...these are the things that kick my butt and send my pain into absolute overdrive.

But...on a daily basis...that 4-5 pain level becomes easier to deal with as time goes on. I hate to say you get used to it but the fact is that you begin to experience a new sense of "normal" when you live every day in pain. I have also...over time...found lots of little things that help with the pain and all those little things add up to a pain level that I can tolerate. Being back at work actually helps a lot in the sense that it gives me something other than the pain to focus on. Sometimes the pain levels get too high and I can't push them to the back of my mind anymore...but most days I make it through okay.

You sound like a very motivated person...you will make it through this and come out on top. The key for me was keeping my eye on the goal. I know that the pain is bad...I live with mine every day...but things got much better for me once I focused more on getting the FUNCTION back vs removing the pain. I'm not saying you shouldn't try whatever treatments your doctor can offer you for CRPS. I tried many and they just didn't help me. But once all that failed and I focused on taking control of my life again and getting myself functional...that's when things started to get better.

Every day I struggle with the pain. Some days...I lose. MOST days...I win. The pain is always there but I am NOT my pain...I am NOT my crps. You will find your way. My boyfriend says it was my stubbornness that got me through. He's probably right. Stay focused and keep fighting this. You will get your life back and you will be happy again. It will just take time...nothing happens fast with CRPS.

I'm glad you found this forum...it really saved my life when it came to coping with CRPS. I don't know where I would be right now without the people here to help me through.

Take care of yourself. I hope your lawyer is able to help you get the financial stuff sorted out. You don't need that stress on top of everything else you are dealing with.

catra, i get tt now. when i first got hurt i went out and was on tt. then i got a pp settlement. from there went into an ot plan and was on what they called living maintenance. i just got pulled from that cause i am not 'medically stable' and am transitioning back to tt.
i am not saying i will for sure not ever be able to work again but i will never work in a foundry. those days are over

I am so sorry you have CRPS. I want to welcome you to Neuro Talk. Here you will find friends that have the same condition. The medications you are on... if they help you and take the edge of, Don't feel bad using them. I have been taking some type of Narcotic, so I can walk without pain. After this many years, I do not feel any side effect at all.

"Living" with the condition I know is hard.Don't think too far in the future, but rather day to day, minute to minute. Holding down a job with CRPS, would challenge the bravest of people. I would employ all fields medicine, from Neurologists, physiotherapy, pain specialists and physiatrist. This last field of medicine is the type of doctor I go to. Physiatrist is different than an MD, or DO. In my case, she specializes in pain first, but treats the "whole" person.

I know one therapy that is being used for CRPS, Ketamine infusions. Ketamine has had some good outcomes for our military, where it was first used. Medical journals such as JAMA, report good results. For research this would be a start. Trying to find a facility that do these infusions is the hardest part. Tampa Bay General has a good reputation for it. Mayo clinic may be doing trials. Also there are a number of folks here who have had this therapy. If you post near to where you live, someone maybe able to help you find a location. I had Ketamine infusions in just a certain part of my body, and had extremely good results with it.

Keep hope alive. There have been remissions, or a great reduction of pain with new therapy. I had a home business, and worked around my treatments.. Maybe you could do something out of your home while you seek help.

No matter what direction you go, NT will be here to be supportive. I will keep you in my thoughts and prayers. ginnie

I know it's hard learning to come to terms with the fact that you will never be the same.

Even for me...back in the same job...I'm not the same. I'm in a great store now with a very supportive team of people. I know I do a great job...but I really WISH these people knew me before when I could quite literally run circles around anyone. Who would have thought I would miss being able to clean out fitting rooms and putting returns away...I was so FAST at stuff like that and could help the team get caught up whenever there was a mess. Now I can't. Or rather...I COULD...but I'm so much slower at it because of the walker and not being able to carry things in my hands...it's just not as efficient. Not that any of that matters to you...but I only mean it to say that I understand (at least to a degree) that sense of loss. I will never be the person I was before CRPS...and I have come to terms with that. I often get those moments of sadness where I still grieve over that loss...but they pass and I focus on the present and what I need to do now.

On the other hand...trying to see the bright side...I am so very grateful for everything I have in life now. Not that I wasn't before...but if I'm being honest I will say I wasn't as aware of how truly blessed I was for all the good things in my life until I went through the really horrible patch with my CRPS. It really put a lot of things in perspective and as crazy as it may sound...I think I have come out of this a happier person.

Your wife sounds like a wonderful, supportive person and you sound like you love her and your daughter very much. I can tell that you are a fighter and you will make it through this one way or another. Focus on your health and your family right now...the job situation will work itself out one way or the other...but you don't need to worry about that right now.

Take care of yourself.