? wording on Dr. notes
 

I just saw my Pain Mgmt Dr. at Clev Clinic. last week.

The copy of the notes from my visit say "Assessment: Reflex Sympathetic Dystrophy upper limb. Pain in limb. She has severe disability related to her pain."

Will the wording above help me at all? I am waiting on my first decision. I was to get the notes from the Doc, and return them with my Symptoms Report.

The last visit notes only say RSD and muscle spasm - no note of severe disability.

I have so many different doctors and things I have tried over the years - gave them copies of all of it. Nothing has helped, I continue to get worse.

I use a mobility service dog and am wondering how that will factor in.

I have RSD, Asthma, High blood pressure, obesity, Fibro, arthritis, sclerosis, chronic headache, problems with my eyes when reading or looking at a computer monitor, depression, social phobia, limited use of my arm, etc etc... but - there are not a lot of mentions in my records of things like "can only walk 5 minutes" etc. Lots of symptom notes, but not much that directly addresses function.

My asthma specialist wrote a letter for me. It says "In my opinion, she does definitely have bronchial asthma that is exacerbated by exertion. She should avoid exposure to smoke and other irritating fumes. She should also avoid doing strenuous work that would involve lifting more than 8 pounds or any other very strenuous work that would involve prolonged walking, or other physical exertions, including repetitive lifting."

I have all the records from asthma doc, foot surgeon, rheumatologist, physiatrist, psychologist who specializes in pain, eye doctor, two neurologists, an orthopaedic surgeon, two pain management doctors... etc. that cover 10 years. In the last 6 months I have been to all of the docs that now care for me. Geesh, records are a couple inches high.

I am currently trying to find out what has gone wrong with my hands and feet. Neuro says neuropathy, but put in his notes RSD flare. Grrrr. Pain Mgmt doc is my #1 for RSD and she said the problems I have with my hands are not related to RSD. Who knows. But am trying to get that figured out.

I hope I have done everything I can. I have filled out the function report - took me a month because typing, thinking and writing are so difficult, and I had so many things wrong to cover. Now, I have been working on the symptom report for almost a month, but want to have it finished tonight.

Then, I guess the wait begins. I went in to the SS office to apply back in May. Hoping to hear something by late fall.

Just wondered about what the pain mgmt doc said "She has severe disability related to her pain"...

Thanks
Jules

I think, though I am not 100%, that the notes will have to be more specific ---a disability doing what...ya know?
Please hang in there..it is normal to be denied the first time around. You sound like you have many things that would prevent you from working, but they may deny you anyway..it is their game to discourage you. I was approved after 17 months...denied the 1st time.
I wish you luck! Kepp us updated!

Hi ~ It really doesn't matter what the note says because SS is going to request ALL the doctor's RECORDS so they can review them. A copy of that note will be in his file anyway. Everything he has written down concerning you, they will read. The doctor's office has to copy every piece of file related to you and send it to SS for them to review. That's what takes so long.

I hope this helps. :) And I hope and pray you get a favorable decision the FIRST time. God bless. Hugs, Lee

The notes I was referring to are the treatment notes... not a note that the doc wrote for me. They gave me a certified copy of my treatment notes to send to SS. SS requested that I get them as it would save time.

I'm just getting anxious about this. I am sure everyone here understands. ;)

We know exactly how you feel. I just re read my post from the other day...I am so sorry it sounded so negative!!!!!! I seriously don't know what was wrong with me. Hang in there..we are with you!

Its not easy for most to get SSDI. I live in a state that is so far behind when i called to see where i was in the process they told me it could take anywhere from 26 to 38 months for a hearing. I live in Alaska. i have been denied once. I am in the hearing stage now waiting for a date its been 15 months since i have applyed again. A total of 4 years plus now that i have been trying to get help and have just been through hell. The system is so backloged.
Hope whatever state your in its much faster and i wish you the best.

Thanks. If I don't get it first time, it won't be because I didn't prepare well.

I have been having problems with my hands and feet the last few months. Trying to get that figured out. After going to Clev. Clinic last week, and a neurologist this week, I have peripheral neuropathy and according to the neuro, central pain syndrome. Geesh, when will this end?

I'd like one of the SS people to live in my pain for just one day, and see how well they function.

for peripheral neuropathy you have to state how it affects your gait and station for your feet/legs and how it affects your motor skills and dexterity for hand/arms.

Thanks - am trying to do that now as I finish up the symptom report. For instance I can barely write a few sentences by hand, and typing is nearly impossible. I bought dictation software, but can't wear the headset, had to get a microphone to use. I use a service dog and now I have to keep transferring her from my left to right side, because my hands go so numb I can't keep hold of the handle on her harness. I'm dropping things all the time now. Yesterday, I went to put the flour container back in the cupboard and dropped it. What a heck of a mess that was. Yesterday when I went to the doctor's office, I must have dropped my keys half a dozen times, and a pen twice. My dog picks them up for me. I can't open things like bottles of water. It is not as bad in my feet, but I wear toe to knee plastic hard braces. I have tingling, and burning, and have tripped up a few more times, but other than that, I have not had as much trouble with my feet. My hands are so stiff and painful sometimes I cannot come close to making a slight fist. I put my hands into microwave heat pack, warm them, then have to start working the stiffness out. Still, my hands are much weaker than they were 6 months ago before this happened.

Are these the kinds of statements that I need to make?

yes, but dont downplay your feet/legs. dont neglect to write that you have to wear braces and that you lose your balance even with them on, that the braces themselves limit your mobility, if they do, that wearing the braces makes your legs feel heavy and that you tire easily, if they do, that you have to take naps during the day. that you can only walk so far, that you can only stand so long, sit so long etc. that you cant climb, squat, kneel, reach, bend without losing balance, for your hands that you cant carry objects over a certain weight such as 10 lbs., that you drop things constantly and cant carry anything for any period of time. that holding things and typing etc cause pain, that you are unable to do things that require fine motor skills in your hands such as sewing, writing, picking small objects up and dont forget to mention how any medication that you take makes you feel or causes side effects, memory loss, concentration difficulties, too much sleep. or too little sleep. nausea, whatever it may be.

Hi daylilfan, if you don't mind can I ask some question? Nothing to personal I promise, just would like to know if you worked in the past? The thing that matters if you can do Substantial Gainful Activity. You said you can't lift more than eight pounds but can you sit and answer a telephone? Do you have MRIs? Can you prove that you can't walk, sit, bend, kneel, stay focused , for a substantial period of time, can you do anything at your old job or what you learned at your old job?

Hi DL,

That recent progress note from your doc helps your 'case' but wouldn't really be sufficient by itself.....detail, detail, detail

The notes by the doc who is treating your asthma are woefully insufficient alone....there are plenty of jobs that smeone who can't lift 8 pounds repeatedly could still do. That doesn't mean those notes hurt your case, just that they will in no way 'make' your case.

On the application when you are writing about your sx's, definitely include info like.....
"I can barely write a few sentences by hand, and typing is nearly impossible. I bought dictation software, but can't wear the headset, had to get a microphone to use. I use a service dog and now I have to keep transferring her from my left to right side, because my hands go so numb I can't keep hold of the handle on her harness. I'm dropping things all the time now. Yesterday, I went to put the flour container back in the cupboard and dropped it. What a heck of a mess that was. Yesterday when I went to the doctor's office, I must have dropped my keys half a dozen times, and a pen twice. My dog picks them up for me. I can't open things like bottles of water. It is not as bad in my feet, but I wear toe to knee plastic hard braces. I have tingling, and burning, and have tripped up a few more times, but other than that, I have not had as much trouble with my feet. My hands are so stiff and painful sometimes I cannot come close to making a slight fist. I put my hands into microwave heat pack, warm them, then have to start working the stiffness out. Still, my hands are much weaker than they were 6 months ago before this happened."

Try to get the docs to be as specific and inclusive as possible.

Doctor notes should tell the whole story. For instance, if the medical records say "Can't stand or walk for more than 5 minutes at a time" that helps, but implies you might be able to sit for 8 hours straight, so you could do some form of deskwork. Documentation that proves your disablity might say something like "Can't stand or walk for more than 5 minutes at a time. May be able to sit reclined in a chair with legs elevated for several hours at a time some days, but usually has to lie down in a bed after sitting up for just a short time."

legalmania - I did work, all but about one month, from the time I was 17 till last December, at 51. I have a lot of pain when doing anything. I have multiple chronic pain diseases. I have diagnosis, but how can I prove I can't sit, type etc? I have had all the tests and treatments they have thrown at me for the last 10 years, and I keep getting worse. I have complained repeatedly over the years about inability to walk, balance, hold things, sit, have taken medication to try to improve focus and concentration. But, I cannot control what the docs do not put in their files. I can give them a long list of problems and in the file it says "continues to have problems" or "feels like she functions halfway in her life" but nothing really specific about can only walk 5 minutes, stand 5 minutes, etc. Very frustrating. The family doc, rheumy, and pain doc all "say" they are behind me not working. But I have no idea what they may put in reports. My old job - I was let go because I could not perform up to standards anymore. I worked at a computer doing graphics and photo manipulation. I can't operate a PC, don't know Word, spreadsheets, etc. I can't hold a phone, can't use a headset. I use a phone here at home on speaker.

I have all the doctors records and notes. Finz, I don't think they go into enough detail to help me.

In short, I think I am screwed.:eek:

make sure that you put down what you can and cant do and why on your application and any other paperwork you get from SS.

Hi daylilfan instead of me trying to explain it I thought I would send you verbatim right from the Social Security site: Hope this helps.
http://www.ssa.gov/pubs/10029.html
I make sure all my clients have MRIs because then you have a specialist that puts a name to your disease, if it's on the disability list you have a good chance to qualify. Besides the MRIs have you had any scans? Like CT scans or full body scans? If they say you're suffering from a severe bone disease that makes your case stronger. Good luck.

Thanks, legalmania. I have read that info on the SS site. I guess I will just have to wait and see...

I've had CT scans, MRIs, Blood Flow tests, blood work, triple phase bone scan, nerve blocks. But, they ruled out more than they showed. With RSD, there are no tests showing you have it for sure.

My diagnosis
RSD upper and lower body
neuropathy
fibromyalgia
myofacial pain syndrome
central pain syndrome
asthma
arthritis
cervical spondylolisthesis C3-C4 and C4-C5
depression
anxiety
social phobia
problems with eyesight - blurry, dry - plus I wear very strong contacts plus trifocal glasses - I have pretty bad eyes.
headache, constant for 2+years from RSD
100 lbs overweight
plantar fasciitis
RSD affects me mentally, along with medication, making concentration, focus, understanding affected. I've been treated with Namenda twice in the past few years trying to clear up some of this problem, but it is bad enough now that Namenda no longer helps. I no longer read because of concentration/focus problems, and I have always loved to read. I don't do soduku, crosswords etc - and have always loved puzzles. I have tried doing a couple online computer courses on Lynda.com for basic PC and Word since I lost my job in Dec. and I just could not follow along. I was amazed at how confused I was. I took courses on Lynda 3 years ago to hone my Photoshop skills and had a few problems understanding, taking notes, etc. but nothing like now.

I use a service dog and wear bi-lateral AFOs.

For me, it's the constellation of problems. I think, personally anyone with RSD should get SSD if they have had it for a couple years and not got better. I've had it 10 years now, and it has taken over almost my entire body. Plus all the other painful diseases I have. Blinking my eyes is about the only thing that does not hurt.

I am 52, only taken a couple college courses (watercolor, perspective drawing) - and always worked in printing, pre-press. I don't know how to operate a PC, run Word, spreadsheets etc, but I know how to do photo manipulation and basic Mac. I don't know how what I used to do could translate to anything else without taking courses or training. I went to vocational rehab and they told me to try for disability first, as I had so many problems. Said if I can't get disability they would see if they could help me.

It has taken me weeks to do the symptom report because I have so many symptoms and they affect everything I do from personal care to sleep to what I eat. I have done all I can to explain. I am editing now, trying to cut down, but I have over 20 typed pages of explanation. I feel stuck - if I cut out anything I won't be explaining my full problem, but leaving it all in I feel they will say if I can do all that, I can work. I have explained I had to get dictation software, cannot use the headset, had to get a microphone to complete the reports because I can no longer type, and that it has taken me so long because I can only sit at the computer for a few minutes, then go lay down.

I don't understand how it is SO hard to get SSD for someone like me, but yet, it seems everyone you see on judge shows, etc. are on it.

I also feel that since I have a steady work history, and even though I came in late a lot during my last year working, and left early a lot, I didn't miss a lot of days...that will count against me.

I'm just tied in knots over this. I know I am no longer able to work. I don't know what will happen if I can't get this through. I can manage for a year or so, but so many people have been 4-5 years trying to get this.

I don't know if you've went through these but these are some of the diseases that SS uses to determine if you are qualified. It can be quit lengthy so take your time. You sound like you really should qualify, but they really give some people a hard time.

http://www.ssa.gov/disability/profes...ltListings.htm

It sounds like you are in the initial claim status of your SSDI claim with no decision being made yet. I haven't seen you post anything about being denied and having to appeal.

One reason many initial claims are denied is that some people who file for SSDI benefits are just not disabled enough. So when you look at statistics and compare yourself, you are comparing your claim with some people that you and any other reasonable person would never see as disabled. That is an unpopular sentiment in a message board like this, but I believe it is true.

You are also trying really hard to control something that is out of your control. Sounds like you have made a concerted effort to provide all the details and even more than enough details about your level of functioning, but you are second guessing yourself and psyching yourself into believing you will be denied just because other people are denied.

Gotta tell you something. SSDI claims are approved every day in your local office. Not as many as are denied, but claims are approved for people who have severe problems in being able to perform job duties, who are over 50 who may have a harder time learning new job skills than a younger person. So are you going to be one of the approvals? Don't know. But I can tell you are agonizing over a decision that is yet to be made. Yes, I know it is your life and not having control, not knowing the result is scary. Do what you can to find a way to cope and follow through on what SSA is asking you to do. You may want to at least try to talk on the phone to the DDS analyst who is evaluating your claim so she/he gets familiar with the person. Doesn't hurt to be able to explain yourself verbally as a supplement to the written word and the medical evidence.

Wishing you the best. Hold on to the positive thoughts.

legalmania - yep, I read through all the list months ago when I was trying to decide if I could apply. Nothing I have is on the automatic list, as far as I can tell.

Janke - you pegged me spot on. I have been talking to the adjudicator about how long it has taken me to do these reports - I think the paperwork said they had to be returned within 10 days. She's been great about letting me have lots more time. I explained why I needed it. She said until they get all their info and are ready to examine my case, I still had time, just call in every week and give her an update.

I feel better tonight, having finally completed these two things. I know they contacted my past employer pretty quickly, and my boss said he supported me. They have not contacted my "gentleman friend" yet... he has known me for several years longer than I have been ill and can tell them what I used to be like vs. what my life is like now.

Yep, I am waiting for the first decision. By the time that they quoted me, they should tell me something by end of October. I've talked on the phone to a lawyer that my family lawyer recommended already.

I've done all I can do.

Thanks everyone for all your help. I really mean that.

The estimated date of a decision (October) is based on an average processing time. It is not a deadline. There are initial claims that are approved in two weeks. There are initial claims that are denied after 8 months. And everything inbetween.

You have done all you can do at this point. Submit the documents. Let DDS make a decision. Do what you can to keep the obsessive thoughts at bay. Watch funny movies. Play with children. Listen to great music. Do something creative.

Hi Daylilly, I also live in Ohio and was scared to death when I had my hearing. I did have a lawyer who did all of the ground work except all of the forms that needed to be completed, my daughter helped me do these as she had experience since she is a social worker. When I went to the hearing it seemed like the attitude of all of the people on the panel was why I had not been there sooner! They were very nice and professional. Good luck, Lisa

Daylilly, I was obsessed and agonized about my claim every single day. It only took me 17 months to be approved. I know it is hard, but try to let God handle it...it is in His hands. You just might get approved in the initial stage!
All the very best of luck to you!!!!!!!!!!!!!!!!!!!!

thanks everyone.

It is hard, when so much depends on it.

We hear you. If anyone can relate, it is all of us. We are right there with you.
I am looking forward to hearing about your approval letter. Prayers to you for a favorable outcome!

I know someone who works for SS D as an adjudicator in another state than where I live. I talked to her the other day. She thinks I did a great job with my case.

She says if I were applying in her state, she would give it a "good" chance on approval first time, and "very good" on appeal.

It sounds like I have a few things in my favor, and a few things not in my favor.

Woo Hoo! Stick that in your brain...when you are doubtful, call her. That is good news.

I absolutely undrstand how hard it is to wait for a decision.....much easier said than done to try not to worry, but as a fellow rsd'er I want to remind you....getting stressed out about this WILL make your pain worse.

My fingers are crossed for you !

I think RSD should be on the automatically get list. But then, there is no test saying you have it for sure.

I was reading on the "Disability Doc" site that SS will consider you able to work if you say you can get groceries, it made me mad. I don't have any relatives other than my 86 year old Mom that lives with me. So, I don't have anyone who can get groceries for us. She does almost everything in the house - cleaning, laundry, mowing. But, now she is getting where her eyesight is such that she cannot reliably drive. So I have been driving her to get the groceries. I take a cart, and start at one part of the store, she takes another cart and starts at the other end of the store. We meet in the middle somewhere, and that way we get done in half the time.

I take my service dog, have to lean on the cart, my dog picks up items that are low, I need help from other people to get stuff that is high. We buy two half gallons of milk because I can't lift a gallon without a lot of pain. Things like that.

Yet, I can work because I don't have any one to go to the grocery if I don't go? I think hobbling around a grocery for half an hour, is a heck of a lot different than holding down a full time job. Not to mention the problems I have with attention span making out the list, forgetting the list, getting the wrong things etc.

The mobility part says something about if you use two crutches, a walker etc - you will be found disabled. Well, I cannot push down - it is far to painful. So I cannot physically use crutches or a walker, or I would be. Instead, I use two AFO braces and a dog. When I broke my left foot a few years back, I had to wear a walking boot for a year and a half rather than be in crutches 6 weeks because I physically could not do it. That is why I use a service dog - she helps steady my walking, getting up and down, without me needing to push down. But no where on the SS Info does it say anything about using a dog.

This whole thing is just aggravating. Sorry for the rant. I have slept about 2 hours in the last 3 days. A few weeks ago, my PM doc upped my methadone to 10mg every 8 hours and I am upset because it is not helping. I put off using the strong meds all these years thinking they would always be there "when I really needed them" and now, it makes me very sad that they are not helping.

I'm just going to go pull myself into a hole now. Thanks for listening.

From disability doc site "If a person is capable of grocery shopping and going to the mall on their own without difficulty, the DDS will assume they have an effective gait."

The Disability Doc is not the Social Security Administration. It would the site of a person who wants your business and anything stated there would be an opinion, not a fact. I would venture to guess that there are many people who are on this site who have physical problems that do manage to grocery shop. You are getting aggravated over a decision that has not yet been made because you are projecting a denial which may or may not happen to you. I suggest saving your anger and indignation over what has happened not what might never happen.

What I hear is the pain talking. Finz suggested that the stress is making the pain worse. My suggestion is to say away from SS disability forums and stop reading other's stories until a decision is made on your claim and do your best to distract yourself from your claim for Social Security because at this point, you have done all you can do.

Lisa and daylily,

I'm also in Ohio. My hearing is TOMORROW! (finally, after 3 years!)

I'm wondering who your judges are. I have Beekman.

Thanks, Janke. Great advice.

EmbraceGrace - I am a long way from having a judge. I am awaiting my first decision. Hoping I will get approval without having to go to appeal.

I hope you do too. Good luck!

DL,

""If a person is capable of grocery shopping and going to the mall on their own without difficulty, the DDS will assume they have an effective gait."

That doesn't mean SSDI would consider you able to work. Try not to read into things.

For one thing, that says they will think you have an effective gait......that means nothing if you are disabled, like me, for RSD and TOS in the upper extremities.

It also says "going to the grocery store ON YOUR OWN" which you can not do.

It also says "without difficulty" You do it WITH difficulty.

The one thing I might be concerned about from what you just wrote is that you go to the grocery store because you and your mom don't have anyone else who can do it for you. I would watch how I phrased that on SSDI paperwork. SSDI isn't for people who would find it easier not to work, it's for people who can not work. I would not write that "I go to the grocery store because I have no one to do it for me" if I could write , "On one of the few days each month that I am able to drive the short distance to the grocery store, I drive. With great difficulty and leaning on the cart for support, I am able to pick up a few items from a few aisles. My 86 yo mother has to complete the shopping. We are reliant on store clerks to move the groceries up to the conveyor belt and put the bags of groceries in the car. We take in the refridgerator items that day and then slowly, with difficulty and increased pain, bring in the other groceries over the next few days." Well, the last parts are 'my story', just guessing it might apply to you too.

You don't have any grocery stores in the area that deliver ? Bummer !

plus most grocery stores have motorized carts to get around the store.