What does a person in chronic pain look like?
 

I have contemplated this question this week, still stewing over the workers comp. dr.'s perception of me. A comfortably seated lady in no acute distress. Until he touches my foot, then I cry and jerk. But he does not document that.

So I am wondering what does a chronic pain patient look like to each of you?:confused:

I guess I haven't given that much thought, alt...

but the lady who comes to mind attends my church (when she can). She's not in a W/C, but suffers from fibromyalgia. Her face is full of worry lines (she's in her early 60's). Nice lady -- doesn't complain unless you press her, then she'll come clean. I feel so bad for her.

Sounds like Worker's Comp needs a more compassionate and perceptive Dr. Sorry for your troubles. Hope you get the help you need. :hug:

I've seen estimates that as many as 1/3 of Americans are in chronic pain, but there's chronic pain, and there's chronic pain. Some can be described as an annoyance easily treated with a couple OTC pills, and are pretty high functional. Then there are those of us who are truly disabled to one extent or another.

Chronic pain, like many other disabilities, is often invisible, so we're going to look like anybody else.

http://www.chronicpain.org/articles/tsocp.html

I can remember in the days BCP seeing someone pull into a handicapped parking space, jump out of their car, and walk briskly into a store, and thinking, "OK, what's wrong with that guy/gal? S/he's just cheating someone who really needs that space." Then came the day that, without my asking, complaining, or anything, my doctor handed me a form to get a handicap tag for my rearview mirror. He knew how much pain I was in walking around, though you'd never know it to look at me. There were some days I was pretty spry too. Then there were the other days I couldn't even drive, and my wife would need to drop me off at the door... That was a very introspective day for me. In those early days I can also recall getting that same look I used to give some others. Nowadays, not so much. I need a cane to get around and keep myself from falling over, I'm not nearly so spry at all, and when that cane comes out, they just keep driving by...

We can't tell by looking if someone is really in pain or not, and it's always going to be a matter of degree. Unfortunately, just as there are a small number of drug addicts who try to get narcotics for the wrong reasons, there is also a small number of people who are trying to bilk the system (though it makes even less sense, considering the hoops we are forced to jump through). These WC doctors, almost by definition, are going to be adversarial. The burden of proof is on the patient to prove the disability and the cause.

Just to play devil's advocate for a moment, how would someone who's faking an injury/illness act in the same circumstance? A comfortably seated lady in no acute distress. Until [the doctor] touches [her] foot, then [she] cries and jerks (as if in pain)(?)

Now please remember, I'm just playing devil's advocate here. I do not believe you are faking, shirking or anything like that. I'm just trying to step back and examine both sides of the situation - the broader picture.

Since the burden of proof is on the patient, we must do our homework, and arm ourselves with the best knowledge and evidence we can (and I'm not assuming you did any less!) Medical records, written opinions from our own doctors, and while I can't locate any at the moment, I'm sure there must be websites offering tips & information on how to best get through these exams/interviews. I wish I could post some. In looking, I did come across some mention that these exams & their outcomes are sometimes challengeable/appealable.

So the best I can suggest is try to find this kind of info, and go as best prepared as you can, and knowledgable that you will be in an adversarial situation.

HTH,

Doc

I've got one of those handicap placards for my mirror too. Sometimes I'm in my wheelchair and sometimes I'm using my quad cane, slowly with the help of my wife, walk when I can for short distances.
If there's a parking spot just as close I have my wife not take the handicap spot so someone who needs it more than I can have it.
It really aggravates me to see someone unthinkingly take that spot when they clearly don't need it.
But then again, it doesn't exclude integrity!

Ugh...I really don't like going to work comp doctors. The biggest problem is that they are there to evaluate you in that ONE moment. Chronic pain has to present quite a problem generally because how do you really evaluate a chronic condition in ONE visit like that? They can look through records, they can ask you questions, and they can examine you. But everyone handles pain differently so how can you judge a person's pain level? just because you are seated and coherent with no visible signs that you are suffering...doesn't mean that you are not in agony.

They always ask for your pain level...scale of 1-10. The best I am ever at in my BEST moments is a 6 these days...but does that mean that I cry every second of the day? No...the awful thing is that you get a new sense of "normal" and when you get to the point where you don't even remember what it felt like to NOT be in pain then you are probably less likely to look like you are "suffering" even when you are. The best you can do is try to explain how it feels to the doctors. I refuse to put on a show or act out my pain because I am NOT faking it and I will not act any differently than normal in ANY doctor's appointment. But while a doctor I have never met before may not "see" the pain, my boyfriend can tell when my pain level is up to an 8, 9, or 10 because he can see the change in my eyes. When it's a 10 he always says I look "green" like I'm going to be sick. But would a doctor notice the differences? Probably not. My physical therapist can now after working with her for months...but I don't think she could have on my first visit.

But this is the sort of thing that a lawyer could take to a judge and fight to get your benefits reinstated. Is it harder when you have a bad work comp evaluation against you? Of course, but if your doctors support that you are in the amount of pain that you are, it becomes a matter of deciding which doctor's reports are more credible in determining you level of disability (the ones who you see regularly or the one who saw you ONE time).

What I really hate is when they try to say that you "made your doctor take you off work." What? I put a gun to his head and said you write this note to take me off work or else? Please. But...some judges will buy into this sort of thing because they don't understand how chronic pain works and that's probably just luck of the draw. Unless they have experienced it themselves or have a loved on who has it's a hard concept to really understand...especially because in theory it would be easy to fake by just lying every time you see a doctor.

Of course...anyone with a real chronic pain injury who has to go through all the mess with work comp would probably think, "Why on earth would I put myself through all of this ON PURPOSE?" I am of the opinion that anyone who is faking an injury will generally just want to take a settlement, get out, and move on. Those of us who need continued medical care, meds, therapy, etc...we have an entirely different situation. Since work comp doesn't allow you to collect for pain and suffering, we worry about being able to pay our bills, not about getting rich off of our injury. Who out there wouldn't trade all the money they have just to be healthy again and not have this pain? But how do you PROVE this?

Grrrr...can you tell I've been dealing with work comp frustrations lately? The problem is...I don't really know how to make the work comp laws better. It's not really a great situation for either side right now because companies DO have a lot of people milking the system and there are also a lot of people with REAL problems that can't get the benefits they should. The system needs a major reform but I honestly have not been able to come up with a plan to make it better because so much relies on the integrity of people (insurance companies, doctors, employers, and employees) and that's just so variable. There are many examples where the system works like it is supposed to...but these are generally in cases where both the employer and employees have integrity where the goal is the same on both sides (to get the employee the medical care they need to return to their job). Oh...if only that were the situation I was in...

Sorry for the rant...guess I needed to vent more than I thought...

I held off on getting one of the cards for a long time because I always thought that I would feel really bad if I took the space and then some little old lady broke a hip or something because she had to park farther away. But I have one now because with the wheelchair and now with my walker, I need the extra space to get in and out of the car (not to mention just needing to be closer). But then I know that if I am able to get to the point where I don't think I need it, I just won't use it.

Not everyone is like that though. I yelled at my mother a number of times when she tried to use her uncle's placard when she was with me. She always said that she could get one herself if she wanted to and my reply was always if you need one then get one but don't use someone else's. To this day she does not have her own. Does she have a hard time walking? Sometimes...so I'm sure she COULD get one...but I just do not have any tolerance for people who use the cards fraudulently (and that was BEFORE I had RSD).

Whenever I see someone park in a handicap spot then get out, maybe a passenger too, and walk completely fine I want to ask them just exactly which one is handicapped?
But my wife stops me lol...

catra,

I agree with everything you wrote. I would give you anything to remember a day without pain or be able to go back to my job. I can honestly say, for one day, I would wish this on someone from wc. Just one day, so they would know what the rest of us feel.
My thought process is like yours, it seems the more pain and persisent the more tolerance. However, when I am above an 8 you can tell. I can barely move, very quite and my face says it all.

Dr. Smith,

I remember those days of thinking about the handicap person and wondering the same thing. I know have a rollabout, but before that my husband didn't want to use the handicap card for me. While everystep hurt, he kept me going.
When the weather is good, I can still go without my rollabout for short distance, but sometimes, I find it would be better to crawl back because the pain is so bad. Even the mailbox on some days are to much. (about 200 ft or so)

My husband and friends joke with me all the time. I now have a shirt that says "If you don't limp you ain't SH?T"
Feels good that they know longer pitty me, but except the changes.
:Funny-Post:

I go through a similar dilemma every time I go to a supermarket or big box store. Can I make it to the back of the store & back, or should I grab a scooter? Which door should I park closest to? There've been occasions I've grabbed the scooter, which showed a full battery, but it drained by the time I got to the back of the store, leaving me stranded. :ranting:

Doc

I have a friend who tells me, that because I have a positive attitude, people don't believe I'm in distress. But that is my public face. I can't keep that up too long. The pain starts talking, instead of me. But I know exactly what you are saying, and my fam physician never touched my leg.

If it wasn't for my pain mgt Doc, I'd be insane. When I took my disability physical, I took 3 pages of symptoms and how to diagnose CRPS and the MD who did my physical asked to keep the papers.

I go to Best Buy a lot. At least they provide a wheelchair. They're in between the front doors on the left...

Gram E
That is exactly what I'm saying, if I go to the dr. Crying and screaming, etc. What have I accomplished. Nothing. Not to mention I'm scared eventually they will put me in the nut Hse. I'm not a quitter. This monster is strong but if I let it beat me down I will be in the nut Hse. :winky:

That is funny. Funny because I've done it and been there. I get so ****** off when that happens most of the time I avoid grocery shopping unless someone is with me so they can push a cart and I can use my. Rollabout.

My RSD looks like...
 

Alt1268: I have often wondered the same thing. After a severe auto accident 2 years ago, I was diagnosed with RSD in both hands and my right arm, should, and neck. To the "outside world" you like fine. But if they only knew what we deal with with our body on a daily basis. I never know what type of "body" I'm going to wake up in. My RSD looks like tired eyes, bags under my eyes, often blue cold hands, and the way I walk when I'm having a bad day is slower and less enthusiastic. With the significant fatigue that often goes with RSD, my colleagues and friends who now know what RSD is, because they care about me and often ask about it, the fatigue is a dead giveaway of the type of day I'm having. Prior to the accident I always had a positive, bubbly, energetic personality. Now, not so much. Please know that those of us with RSD really understand what you're going through regarding doctor visits, symptoms they acknowledge, and especially those that don't. The important thing is that you continue to advocate for yourself and your RSD needs. Not easy, but please continue to do so. Would it be better for you physically, and mentally, to look for another RSD/pain specialist (physiatrist)? My prayers are with you that your physician(s) "get it." :hug:

Was this the insurance company's doc? Honestly, if it was, consider yourself lucky. Every state is different, so maybe the WC system in your state isn't as messed up as in CA...still, most are reportedly fairly adversarial.

Here's a good website to explore the WC system in your state.http://www.workerscompensationinsura...s-Workers-Comp

Please try not to take these appointments personally. :( Often times their whole goal is to try and make the experience so miserable for the injured worker, that they will take a raw deal just to not have to deal with WC anymore.

I can fake "normal" for small chunks of time. And when I'm in too much pain to appear normal, I stay home. I've learned that it is appropriate to run errands (or go out to breakfast, etc.) and not take breakthrough meds before a doc appointment, so he/she can also see me in bad shape during some appointments as well.

A good PT can be invaluable in documenting what causes your pain to spike during the course of your treatment. Having your doc request a Functional Capacity Test can be helpful as well. For example, I repeatedly stated writing caused me both pain and swelling or swelling and pain (chicken or the egg kinda deal), so testing my ability to write was important. My PT had me write until my pain escalated to a fairly high level (and I was crying), by measuring my swelling before and after with water displacement, and documenting how little activity was required (1/3 of a page or so), it proved I wasn't in danger of winning a daytime Emmy anytime... ;)

Irish4luck,
The problem isn't not my docs, but wc doc and just generalized. I was told one time at a new position that my employer wanted me to try. (desk work) that I ask stupid questions and she monitored how many times I pee. (I am a coffee, tea drinker, to stay awake) so yes I will pee and no question is stupid. So yes I agree fatigue is a part of it.

Lit Love,
yes this was wc doc. But it just makes me wonder. This is not like acute pain. Maybe in the begining, but now its like a burning, tingling (bee stink), throbbing, crushing, raw, etc. feeling.
I'll check out the website.

Burning pain is an indicator for RSD and while intensity is of course a major factor, burning pain is generally considered one of the most painful types of pain. ;) Awkward sounding, but...

Do you feel as if your RSD is possibly going into remission? Or just that it is being managed well by meds?

Just to clarify, this was a doc that was representing WC's interests? If yes, they can behave truly as "hired guns" in the worst of circumstances. I recently had a conversation with a QME (a doc that supposed to be unbiased towards either side) and he related a story about being approached by a WC doc that was looking for a new partner. It would have been big money, but he couldn't stomach what the job really entailed--doing everything in his power to prevent treatment for every injured worker he would have seen, regardless of the veracity of their claim and urgency of their need for treatment. Again, every state's WC system is different.

Lit Love
My pain started in my ankle, went to my toes and engulf the top of the foot. It is now cold, not as painful in the calf to the knee. Since Sept. it is starting to burn and painful in my left ankle as well as a feeling of running ice water in my left hand and forearm, with no pain. (but that is how I knew something was definetly wrong with my right foot.
Yes, this was the wc doc. Not mine. Mine has been great, very supportive. My atty. doc agreed on the RSD dx, as well as the dr. who first diagnosised me and the 2 that work for my employer. So thats 5. Wow!

When I started feeling severe chronic RSD pain in August 2001, I received no effective pain treatment. I was crying and screaming so loudly that the alarm of my house would go off and the dogs would bark their heads off. Result: the cops would come (I guess a neighbor called them). At that time, I was in a wheelchair (my left leg had not touched the floor for many months and if I tried to stand on that leg, I would just fall), so I could not go out to talk to the cops (there were four steps to go in or out of the house). The cops sometimes would try to come in to help me, but with an electric gate they could not open manually, and with my two dogs (a pitbull and a German shepherd), they had a hard enough time doing so. However, I thank them for all they did for me. I found cops to be nicer than many, many doctors. I would also sometimes get violent towards myself (for example, I would hit my RSD knee). No one ever knew about this, because I did not want to be locked up in a psychiatric hospital as a 5150, even though I had friends who went through that experience and told me it was quite easy to escape. Months or years later, I learned to hide my pain because no doctor believed me, so I thought: "Why show them I am in pain if they do not believe me?"

I learned from my experience not to judge people's pain according to their appearance and actions. Some people show their pain and some do not. I like the proverb that says: "Do not judge a book by its cover."

It seems that the face of an RSD patient is stoic. We do not complain about our pain, nor burden other people about it other than to maybe say I am just having a bad day. It appears to me that people who have the mildest pain complain the most.

As far as the handicap placard, I am the person you all love to hate. I have RSD in my upper extremity, shoulder and neck--going on over nine years now. I do walk with a small limp from the bi-lateral bone grafts taken from both hips to patch my arm back together. I also have extreme fatigue, migraines and often very high pain levels. As it stands now, I have to drive about 25 minutes to even get groceries, and many times that placard means the difference between one errand or two. So yeah, when I hop out of my car, it is a really good day for me and I am trying to get a lot done, so please don't judge me. Lisa

In all honesty...knowing what I know now about RSD and chronic pain...I don't judge anyone that I see using the Handicap spaces. I know a lot of people DO use them illegally...but I save my harsh words for the people I KNOW do it (like my mom tried to do on a number of occassions).

I waited 2 years before applying for a handicap placard and honestly I was shocked when the doctor checked the Permanent box on the application. What a kick in the teeth...but honestly it's what I really needed. I figure if I don't need it on a certain day, I won't use it, but when I DO need it then I have it. Everyone needs to act according to their own conscience with this and know their own limitations. I cringe at the idea of going into a big box store because even if I am feeling "good" when I get there...by the time I get to where I am going and come pack out I will be huffing and puffing, incredibly slow, etc.

As far as getting a cane or wheelchair...I strongly recommend to use whatever will keep you moving and living your life. The dangers of a wheelchair of course are that you won't actually be walking and standing, and therefore not using those parts of your body which can make the RSD and recovery much, much harder. Sometimes you don't have a choice...I was in a wheelchair for months because I couldn't stand or walk (because of pain, poor balance, and other stuff). The amount of physical therapy it has taken just to get me walking a little bit has been extensive.

Now I am using a rollator (4 wheeled walker with a seat), and I like it a lot (it's pink and I intend to decorate it for the holidays). It keeps me moving (and is less painful because it's not FULL weight bearing), gives me a place to sit when I need it (which is still often), and gives me a way to carry things with me so I am not so helpless when I am by myself. I, of course, hope to eventually be able to walk around again without it, but for the time being at least I am able to walk and get around the house and occassionally go out (when someone can drive me), while still doing the physical therapy exercises that are full weight bearing and designed to get me functioning better and better. The only real negative with the rollator is that because I now have RSD in my hands they always get bright red and swollen (and oh...the PAIN) if I walk for too long (because that's when I push on them more)...but when I weigh that against the freedom to move around...freedom wins every time.

So my advice is to find out what is best for you in terms of a walking assistant. If you want something that you can get all decked out...then go for it...whatever makes you smile. If walking with a cane, walker, rollabout, or even using a wheelchair will allow you the freedom to live your life and get a greater sense of normalcy (ie...lessen the pain enough to make this possible) then you should seriously consider getting one. There are a lot of rental companies out there, so if you're not sure what would be the most helpful you could try out the different things for a week and see what is best. Or if there are people who have one laying around that they are not using then you could borrow just to try. It's definitely worth it if you can get some semblance of a normal life back with it.

Kitty,
Thanks for your honesty. I found with the cold weather coming in the increase in pain, that I am back to the emotional rollercoaster. I punched my thigh and thought this sucks. It just sucks!
I hate what my life has become. I want to work, I want to go to the store on my own. I don't want to plan things around taking a pill.

Alt,
I feel the same way. This sucks!
I so much want to do the things before this monster happened. I used to drive a semi. I can't even drive a car now. My house is in need of repairs that I used to be able to do. I used to run around with my dog outside, can't do that anymore. Hell, I can't even mow my lawn cause of my balance and only one hand. That's the hard part. Knowing what you used to do and thinking of your now limitations.
Somehow we just need to realize that we're in this mess and at least we have the courage to go on. I guess it's time to make the lemonade!...

Jimbo,
Lemonade? I quite drinking years ago, but I think that lemonade best have some whiskey. lol
:Crazy 2:

Re: cronic pain
 

Cronic pain makes you look old. You don't sleep well, and it is a weight you carry on your shoulders day in and day out. I am gratefull I am treated for pain and am on a medicine that helps me cope so I can have a good quality of life. I feel so helpless when I read the posts of those who do get medicine, but even that does not help them with their quality of life. That is what it comes down to. I hope those who have cronic pain, can find the help they need. I will be 60 this next month. I look older than I should because of all my health conditions. I hope your pain is less each day. ginnie

Alt,
Ha ha ha,
A glass or two of good ole Jack wouldn't hurt.... :Crazy 2: