Hi, I'm new to the board so if this is 2 miles long, I apologize! On 3/31/2012 I cut my right dominant hand with a table saw, 90% amputation of ring finger top, lacerated pinky and broke my hand. I live in a small town in AZ and was transported to the local hospital where I sat for 5 hours, with no treatment other than IV pain/anxiety meds and a piece of gauze over my hand.
During the 6th hour a nurse came on shift land wrapped it up and packed it in ice and prepped me for transport to Tucson. I was in their ER for 2-3 hours before I had surgery.
I sawed completely through my bone so they reattached my finger with a pin, splinted me to the elbow and I went home the next day. That's is the good parts of my story.
My follow up appointments with my surgeon went from every week to every two weeks. Within a 2 month period he informed me that I had developed CRPS, my entire hand was swollen twice it's normal size and the pain I experienced when he would examine it was beyond explanation.
It took until August before the last visible part of my finger was healed. I know longer looked like I had a burnt eggroll for a finger.
I was offered no pain meds except naproxen and 3 different rounds of antibiotics. I started and completed PT/OT from September thru November when I was told we were done, there was nothing else they could do.
During this time it was suggested that I file for SSDI so I did. What a nightmare this is!
I am right hand dominant, 49 years of age, occupation bookkeeper. I have use of my thumb and index finger on my right hand, that's it. The pain I experience, which my "therapists" told me to learn to deal with goes from "dang that hurt" to vomiting. My social interaction has decreased and my anxiety levels have increased, and of course there is depression. I have to be aware of who I am and what I'm doing at all times. My personal bubble has doubled due to my guarding my hand / arm, and my ability to do many things has changed, of course.
SS sent me to see a psych doc because I mentioned on my application that I had an anxiety disorder that had been present for many years. I complied with all of their requests and was denied. I resubmitted and they sent me to a psych doc again, so I called my case worker and asked her why? Where she replied, Oh? Is your hand still injured?
I have sent her every record I have, a personal letter, a 5 page CRPS informative paper with the SSDI paperwork that covers it in my first package, which she totally disregarded. She told me 1) If you were 55 you would not be re-trainable. 2) We can make you left hand dominant 3) people who have cut entire limbs off still work 4) No, I received nothing from your surgeon because YOU didn't have a barcode envelope. I kept my cool, although it was difficult. I explained the pain and the inability of my hand, etc.
They sent me a letter to see a doctor at the Hampton Inn. I called her and said I was uncomfortable going to see a doc in a motel. They rescheduled with a doc at the Holiday Inn! I called and said there must have been some sort of miscommunication...Then they scheduled me with a neuro on Saturday afternoon in Tucson. During this conversation I again asked her if they had received my records they had requested and she said, No, nothing since December. So somewhere someone is not complying with requests.
She also told me to file unemployment, which I did, and I became just flat out furious when I received 6 letters from them in 1 day that were redundant and a denial (of course due to length of time, voluntary quit and unavailability to work).
The frustration, pain, inability etc. has made me about crazy! The crass remarks of people and the red tape is enough to make someone postal. If anyone out there thinks I can run a 10 key calculator as a bookkeeper they have totally lost their minds. I can not hold a pen and fill out an application. I sit for hours slowly typing out forms and providing as much information as possible, knowing that no one reads it. Believe me, my responses to unemployment were cynical and my comment said "if an actual human is reading this drop me an email, send me a text, heck come on over". Both of these agencies are under the Arizona Department of Economic Development, I politely suggested they walk across the hall and discuss it with each other.
SS says I am able to work and Unemployment says I am not.
We have a huge deductible thanks to the changes in our healthcare system, my GP is unaware of CRPS and my surgeon see's me as his only failure.
I've contacted our senator and was dumbfounded when he responded, but they said it would have to wait until the hearing stage....
Last month both of my feet swelled up big time, I've never had swollen feet even through pregnancies, I'm sure some of the other things that are happening to my physically are related to the CRPS and I am at a loss as to what to do.
Thanks for letting me vent,
One Frustrated Pebbles

Very sorry to hear you developed this monster of a disease, PebblesCanDo. I'm a husband of a wife who broke her wrist and all hell broke loose. In my case my wife kept it to herself, getting no treatment from doctors, going from doctor to doctor, all rejected her until she finally told me what she was going through for 2 years. (I knew something bad was going on this whole time but she was afraid I'd leave her if she told me about RSD. Instead I got angry at the system, and became her advocate. She went through pretty much what you are going through now. Although it all took time things finally simmered down. Do you have any family member, spouse, friend that can help you through this ridiculous mess, act as your advocate?

Oh Pebbles I'm so sorry you are having such a horrible time. It's awful when the 'system' that is meant to help you in times of crisis actually seems to be designed to make things even worse....

Hang on in there and keep fighting. Have you got anyone who can help you with this? They could help you fill out forms and send emails, and come with you to appointments - having someone else there seems to get better results than being alone, for some reason docs etc take more trouble over you if you have back-up.... If you are on your own, try finding a local advocacy group through your local hospital or clinic, they should be able to help.

My best advice is to read around this board and pick up as many tips as you can from other postings, and read up on the condition from reliable sources. Don't go near any scary CRPS pictures (does your psychological self no good at all...), and avoid any really negative sites as they can just make things feel even more hopeless than they do already. Don't go near ice, try to keep your hurt limb gently moving as much as you can reasonably bear, and eat healthily to keep your strength up. 500 mg of vitamin C a day has been proven to reduce the chance of spread, and is well worth taking if you can. Quite a few of us use Epsom salts, they really help with some of the burning pain. Get the unperfumed kind and use it either in a warm bath, or wrapped in a damp cloth and placed on the sore area - it can really help. Avoid extremes of temperature like very hot or cold water too as over time they can make things worse.

CRPS pain tends to change over time. It starts off as a raw intolerable pain that drives you mad and depresses the hell out of you, but it does get easier to deal with. I am just starting my third year of CRPS, and have got some of my mobility back (I was on crutches and in a wheelchair for a while, not fun). I am still in pain, but I cope better with it, and can do more. You have to believe that you will enjoy life again, and that good things can still happen. It feels as if your life has been ripped apart along with your body, but don't ever give up on yourself - you are strong and obviously brave as a lion to deal with what you have, and you will get through this bleak time

You have to protect yourself as far as you can from crappy medical and psychological care, and that means learning as much as you can about the condition and standing up for what you know is your right. If your doc is hopeless, then try to find another - you need and deserve much better care. Ask friends and neighbours who they would recommend, and ask the least useless medic you have seen to give you some advice. If your politician won't help (his is a pathetic excuse, grr) keep sending letters politely reminding him of his obligation to support and assist his voters, then consider contacting his opposition or your local press.

Talk to friends and family about what you are going through, and print off some info from a good site like rsdsa.com (? Hope that's right!) for them to read. It's hard for them to understand the condition, and most of the time they don't mean to make you feel bad.

I really really hope hope you can catch a break soon and get some relief. Stories like yours just make me so angry and sad, because your life doesn't have to made so terribly hard like this, just when you are trying to deal with such a horrible and painful condition. Sadly, you are not alone, and the complications of CRPS seem to give the system a lot of excuses and loop-holes to stop them from caring for you like they should.

Take care of yourself and keep posting. I hope tomorrow is better

Bram

I do, I have an awesome husband, we were married about 6 months before my accident. My problem is that I live in a rural area where I can't get the health care that I need. My surgeon is about an hour away and he's done with me. He did an RFC for me and my SS worker can't locate it.
The fact that this is an unknown disorder to so many, including my caseworker is the biggest issue of all. If you are going to work in a field like SSDI then read what a person says, read your own handbook, it tells you about the CRPS documentation. I'm just frustrated with the red tape crap.
All your life you pay into a system that consistently denies you when you need it, yet we can not deny the payments they take from us.
My entire personality has changed, the way I live, dress, do my hair, drive my car, cook my meals, respond to people. Our deductible just went up big time, even if I could find a Doc that knew what I was talking about I can not afford continual care. I deal with my pain the only way I know how. Meds don't affect it at all, usually heat and movement if I can. My hand gets so cold that people will touch it and be amazed. I wear hot packs inside gloves.
I think the biggest obstacle that I have to overcome is getting my caseworker to understand that I can not go back to work, and she is not even willing to read what I've written to her or she would not be stating her replies the way she does.
I'm going to gather all my records myself since my Doc's haven't complies and have someone drive me the 80 miles to the closest SS office and take them all in and say here, let's go over these. ALL DAY LONG!
AArrrrrgggghhh!!

I am so sorry you are going through all of this. Keep fighting and don't be afraid to ask for help when you need it.

I don't take any meds for my CRPS except clonidine patches (for some of the "other" CRPS symptoms like dizziness, blurry vision, etc) and lidocaine cream that I buy off amazon that can help take the edge off when the pain is really bad. Heat is the single best thing for my pain though...glad you have found ways to help without meds since it seems you are in the same boat as me in that they just didn't help much at all.

Keep fighting for the SS. I know it's much easier to say this than do it...but TRY not to get yourself too worked up about all of it. Stay as calm as possible, make sure you get all of your records and everything else you need, and try to take it easy while you wait for things to all shake out. Stress will only make your CRPS worse. I know it's not possible to stay stress-free...but if you feel yourself getting too worked up then it is time to step back and rest for a bit. A lot of times these things are a waiting game.

Have you checked out the SS forum here on Neurotalk? There is some really good information on there and tips about applying for SS. I would see if you could do a search on SS and CRPS/RSD specifically...I think I remember seeing some wonderful posts about what other people put in their applications that got approved, their experiences, etc.

Take care and keep us posted on how you are doing. This site has been SO helpful to me in my fight with RSD. It literally has saved my life and I don't know where I would be without it and the people here.

Hi Pebbles! I am so sorry that you are having to deal with CRPS and the "system" on top of it. You have already been given some great advice here and will find some great info on the Social Security Disability forum also. This site is awesome! I have had RSD/CRPS for over 22 years now. I developed it in my right hand in 2009 when I injured it. It mirrored over to my left hand. At this point it is in my face, hands, feet, shoulders, left arm, left leg, trunk and possibly internal. I stopped working at the end of Dec because I just could not handle it any longer. I was a financial & human resource manager and I completely understand what you are saying about being a bookkeeper when you cannot use your dominant hand. Using your non-dominant hand for such a job is no easy task! Those making the decisions have no idea how hard it is to perform your job when you cannot use your hand. I am right-handed and when I first hurt my hand it was braced and braced again later (that was a mistake!). I learned how to 10-key, write and do everything left handed. I think I was able to do that because I injured my hand back in the early 80's and had surgery on it back in the late 80's and had to work left-handed then. It was definitely not easy and it was temporary! Everything was done slower and not very legible. Once the RSD mirrored over to my left hand, that stopped.
I filed my disability claim with work's STD/LTD insurance carrier and was denied. I appealed and was denied. Getting ready to appeal again. I went ahead and applied for SSD in April and was, thankfully, approved. I will begin receiving benefit pmts in Oct. I was shocked to be approved on the first try, but oh so grateful!
I had copies of all of my medical records. I completed my application online and then dropped the records off at my local SSA office. I really think that helped my claim! I of course kept a copy of everything just in case something was "misplaced" by them. I was advised to make friends with my case manager and be very nice to her. I was told to ask her what she needed from me and be happy to supply it to her, that this would go a long way.
I hope you can get things resolved soon. Again, so sorry that you are having such a hard time.
Nanc

The SSDI process is complicated. You need to learn what is required from you and the Sticky "Don't start your claim unprepared" is a decent place to start. I won't repeat what I've written there...

Your doc should have a copy of the RFC he filled out. You should request personal copies of any important documentation from now on. Hand deliver copies to your local SS office, and have them date them in the future.

RSD patients symptoms vary widely--one of the reasons it is not an automatic qualifier for SSDI. It's your responsibility to document what symptoms you have and what your limitations are. You must not only prove that you can no longer perform your old job, but any job--and this includes one making anything above the SGA level (roughly $1000 per month).

Beyond the SS ruling on how RSD (which I would print and send to your rep http://www.rsdinfo.com/social.htm ) I don't think it's realistic to think your rep will read up generically on RSD, regardless of what you supply. They are not medical professionals.

I found it very helpful to read the entire SS Blue Book http://www.ssa.gov/disability/profes...ltListings.htm

Best of luck.

Hi Pebbles, I first need to apologize, I didn't read through your entire story. I get so frustrated with what happens to RSD patients that I honestly don't even want to know some times. I'm not sure where you are but I lived in Civano at the SE edge of town, so I know what a huge Pain it can be to drive a good distance to see a decent doctor. I moved to Tucson from Michigan, because of my RSD and it was a rude awakening to find out that what I thought was good care in MI was actually not. The pain specialist I found through lots of referrals and the RSD support group in town is Kenneth Gossler. He is partners at Pain Institute of Southern AZ off of 1st and River.
Gossler has even been involved in some of the Ketamine treatment studies going on, so he is pretty up to date and he is the one who showed me what actual pain management was. Before I had him as my doctor, I was practically a zombie, with his care, I became functional at home. Not massively, but I was able to do at least one chore a day or go for a walk, etc. and got a bit better over time, even though my RSD spread to full body within a year after moving. It was already spreading before I left Michigan, so I don't blame AZ weather or anything like that for the spread. He is absolutely a realist. He will not BS you with what is going on. If you are aching for a touchie feelie doctor don't go see him. He will level with you and in my case he was very helpful with paperwork needs. I went through my long awaited social security court case and judicial decision in Tucson. It's very difficult to find a chronic pain doctor in Tucson, there are mostly pain clinics who deal almost exclusively with acute pain. I can tell you a few people to stay away from if you email me. I can also give you a great PT, who after PTs in Michigan and several in Tucson actually changed my life and I saw her several times over the course of 8 years for peripheral pain and things that developed with time. Her name is Carol Iches (I think I have that spelled right, it's pronounced I-Kiss0 and she is at Tygiel PT near Carondelet Hospital. Carol is trained in sports PT, chiropractic and alternative medical treatments. Her understanding of the body is so much broader than you can imagine. She is amazing and resolved issues I had with residual pain from the surgery that caused my RSD, after several years when no other PT ever made an effort to address. And with only two visits made a huge difference in my pain level. She is a PT Rock Star and She is versed with RSD something most PTs are not experienced with.

I am so sorry for your injury and the development of the RSD. I got mine from from a surgery for a SLAP tear to my right dominant shoulder, so I totally understand at least some of the ways your injury affects your mobility and function. Take care and if there is any way possible try to get in to see Kenneth Gossler. He is amazing and was a huge life saver for me. If you are at the more north side of town and do get in to see Gossler, he has another PT that is very RSD friendly, owns her own practice, first name is Adrienne, sorry I don't remember her last name but I'm sure you can find her on line, I think her name is the PT Practice name. I'm not skipping and jumping but I'm not a zombie anymore and Im not housebound.
soft hugs, Sylvia

Hi Pebbles, I went through my social security court hearing in Tucson. Word of advice for dealing with Soc Sec, Im guessing that the Tucson Office on Campbell is where you are going... Document everything. I know the thought of that alone must bring chills to you, but every time you talk to someone on the phone, write down their name and the date and time and what the discussion was about and as close as you can to exactly what they said. ABsolute MORONS!. Make an appointment, don't just show up. I would mail them things from across town and they'd say they didn't get them, then I show up to bring them in and they say, oh here it is, we have it right here in your file. You hear stuff all the time about gov't employees, but I never fully grasped how few people cared about doing the right thing or their job properly until I dealt with these people. "You can't expect us to get anything you put in the mail." Why not, you expect that I am supposed to get everything you mail to me. I can not tell you how many hours I sat there in that miserable uncomfortable office, waiting.

I was denied, appealed, was denied again and then had to file for a judicial hearing. At that point it was easy... Once I got the hearing and appeared before the judge. Be totally honest and tell them every F'ing detail. Even the things that are humiliating and depressing and make you feel bad about yourself. This is where you need to suck it up and be honest in massive detail and to a fault. I had to keep track of things by hand back then, I couldn't sit at a desk top PC. There is a app now that I've just started using called My Pain Diary. A guy in Australia who has RSD built it and he thought of a lot of detail. You can even add photos to daily documentation. It's really easy to use and you can print and email reports to doctors and print out stuff yourself. It's about $5 but for me, even though I do not have any litigation or legal stuff going on right now, find it very useful. The best part is that it's massively easy to use. Have that sweet husband of your take photos of your hand, arm and you in general, when ever you have swelling, discoloration, etc. document that as much as possible. It will prove invaluable if you have to go all the way through Soc Sec to a judicial hearing or have any other litigation you need to be prepared for.
best of luck, I know it is not fun. Sylvia

SS staff has had fewer employees and much heavier caseloads for several years, and I'm sure this is the same at the state level reps as well. Mailing something is just a bad idea wherever a person is in the country. Files can stretch to hundreds if not thousands of pages, so it's a must to be selective about what you want them to focus on. Faxing a copy to a direct line is okay, and then walking a copy in later if there are time restraints. Paperwork that is time sensitive, like appeals, must be WALKED in, getting a receipt is very, very important.

I personally think written communication is much safer. Just because you have a written log of verbal communication doesn't mean it'll be of much help in my experience.