13 Things You Don't Want To Say To Someone With Chronic Pain

6/ 1/09 6:16pm

I read ur lil article and find it quite fascinating. I'm tired of my Dr's telling me they have tried all the pain medications that they can. I have take vicodine and percocet and neither has worked. I too am in pain 24/7 and i have had many suggestion of execise and dont give up but it is easy to say that. I haven't gave up yet but i am getting more depressed because I am so limited to what I can do. I am no longer that active person.

Linda

10/10/09 10:18pm

Dear Blue........

It is wayyyyyyyyyy past you getting a new Doctor, he/she seems like a very insensitive person, (I cant bring myself to calling that person a doctor) I am very lucky to have the primary physician i have, she, like me has been banging her head against the wall trying to figure out what the heck has been going on with me,, she takes my suggestions, i take hers, we worked TOGEHER., although it took many many many years, we did find out i have F.M., lord knows a have been suffering and suffering,, my Doctor could feel my spasms, she could see them pertruding thru my skin, if a pain med worked, we stuck with it, if it stopped working, we went with others until we found the right combo to make me comfortable, i am not saying not in pain at all, but atleast comfortable,,,pleaseeee find another doctor. there are several out there, that do care,we tried everything and everybody, until i went to her about a month ago and informed her i was depressed and wanted a mild antidepressant, she put me on cymbalta, and told me it is for depression as well as F.M., i asked her if she thought i had it,, she said that we are going to find out, and i went to a rhuemathoid (spelling sorry) specialist, who confirmed it, now we are working on doses, to get me to the point where i can get off the pain meds,, i dont want to take them,,, but deep down i know i probably will have to, the Dr. she sent me to told me that after a while the pain meds stop working. i am on fentanyl patch, hydromorphone, soma, as well as klonapin (which i take for p.t.s.d)

PLEASE DONT GIVE UP... call your insurance company,and ask them for a doctor who specializes in chronic pain or, whatever kind of doc you want to see,, dont just pick a doctor,, call your insurance company.. best of luck to you my friend..................Linda

Linda

10/10/09 10:26pm

If i am correct,,,,,,CYMBALTA IS THE FIRST DRUG THAT WAS APPROVED BY THE FDA FOR DEPRESSION AND FIBROMYALGIA, LYRICA IS APPROVED FOR M.F TOO, BUT NOT FOR DEPRESSION, AND THERE IS ONE OTHER DRUG OUT, I FORGET THE NAME,, I AM SURE ONE OF OUR ROOMIES WILL LET YOU KNOW,,,,,,, TRY AND GET A SCRIPT FOR CYMBALTA....... BE PATIENT,,,,,, IF I WAITED OVER 27 years in pain, seeing every kind of specialist there was to be seen, chiro, p.t., neurologists, etc,,only to hear " there is nothing wrong with you" trust me i was ready to ...................well,,,,, end it,,,,,, but, IT WAS WORTH THE WAIT,,,,, no go get em tiger,,, speak your mind,,and tell your doc to go chit in a hat,,,,,,,,,,,,,,,,,,,,,,, and get a doc that CARES,,, CHIN UP BUCKAROO!!!!!!!!!!! LINDA

bluealleycat

10/11/09 6:12pm

i am now going to a pain clinic. I have been going there since July and I don't think they know what they are doing. I have been given injections. One in the back and one on each hip. The injections I am told when asked are injections specifically for your problem. That tells me specifically what kind of injections, right. The injections do not help. I am now having problems with walking and still in pain. They have prescribed methadone 2x a day. A total of 10mg per day. Also am giving clonazepam for a sleeping aid which does help with sleeping and tramadol. The other two doesn't do much for me at all. The diagnosis I am giving now is that I have scoliosis and arthritis. I still have not given up. I do projects and everyday things but can't stand or sit for more than an hour with out severe pain. I take my meds as prescribed. I am not the type of person to sit on my butt or should I say lay with heating pad on me 24/7. Although trying to get in to a specialist is very hard. Oh they say I may have osteporisis even though I had the test it came back fine. According the Dr. I'm seeing now they say that the test is not always accurate. All they can do is inject me and say it will take time. Hey guess what it seems like I have lots of time now. Thank you for ur comments. I appreciate all the help and suggestions I can get.

badbackytoo

6/ 2/09 10:41am

all of them also. and i just ignore what hey say i have even had people lauigh at me cause they say what on earth are you talking about you look great, you just wanted to retired early!

i just walk away from them.... if onlythey could be in my shoes for one day or even 1 hour...

Mike O.

8/28/09 12:20am

No kidding ! The attitudes are unbelievable. My spouse is always, angry, disappointed, doubtful, etc. . Thinks or at least thought I had a drug problem and that was why I was in so much pain. It has been and continues to be a Very LONG journey !!

Mike O.

ICSarojini

9/25/09 1:05pm

Your spouse does that too?? Ugh... I am RIGHT THERE WITH YOU and I hate it. I've been diagnosed with fibromyalgia and interstitial cystitis (chronic bladder disease that causes severe pelvic pain) for several years now, and my husband has said that kind of thing a number of times...

Mendel Potok

10/26/10 11:35am

Absolutley, it's amazing how quickly you learn who has empathy in your life and who doesn't. Glad to know it isn't only me.

http://www.ssrights.com/

mustbehope

6/ 2/09 11:12pm

Loved your list of 13 incredibly insensitive, cruel and ignorant things to say to a person in chronic pain-- I'm sure we have all heard many of them during our "journey". The one that got me the most was about 14 hours after major surgery for placement of an artificial disc, a "friend" came into the ICU and said she had figured out my problem---I just didn't know what pain was--there I was, lying unable to move anything in an ICU bed, hooked up to a morphine drip and this was her "supportive" insight.

No, I have given up on anyone understanding what our lives are like.

Elaine

suzi k

9/ 2/09 4:22pm

loved the list,been there myself i have had 2 disk fused in my neck and i still have 1 that may have to be fused at the very top of my spine, i also have lupus and fibromagila and now my lower back is going out on me and i too have been told about 6 out of the 13 but what really upsets me the most is the way i'm treated when i have to get my pain med's filled and now because there are too many people who abuse pain med's that don't have a problem with pain make's it a nightmare for the DR;s trying to take care of their patients and the unforunate folks that live in pain everyday and these pain c linic's are a rip-off they want to give everyone that they see these shots in their spine. I had one it cost $1700.00 my insurance will only pay a small amount on this, i did get pain relief , FOR 1 DAY. I would like to know if there are more folks who have had these shots pushed on them by these clinc's ?

starr

10/ 8/09 5:12pm

yes and what they dont tell you is sometimes they workk and sometimes they dont but the worst part is these steoid injections can cause someone to become type 2 steroid induced diabetes and i am one of them and i know at least 5 other people diagnosed with the same thing. but you say this to the pain drs they really look at you like your crazy and say that it only elevates your sugar for a couple of days . well yes thats true but over a period of time your sugar level may not come back down and then they diagnose you with diabetes.

Anonymous

10/ 9/09 10:11am

Also these steroids cause bone deterioration --which quickly leads to osteoporosis!! Take it from someone who was diagnosed at age 29!!!

starr

10/ 9/09 12:50pm

thank you fo rthat i didnt know that but i guess that would explain why the vertabrae in my bck and neck are deteriorating. it seem sthat im getting better answers on the computer than from these drs.

Linda

10/10/09 9:57pm

I was so pis-ed off reading your response i hope i spelled your name right,,,ok ok,, wait a minute here,, I MISSED SOMETHING,, did i read it right that injections can cause type 2 diabetes???,, i almost fell off my chair, (wait,,never mind i wasnt sitting on it, i was standing) all kidding aside, i get injections mostly trigger shots, as a matter of fact i just got five of them all the way up my shoulder to my neck, ( i was recently dx with F.M.,and rhematoid doc said for me to continue with injections) i stopped going because, the results are very short lived,, except,, and IF ANYONE HAS SCIATICA PLEASE LISTEN UP.. i had an injection into my periformis muscle because i never knew when my leg was going to give out, and never knew when i would end up on the floor, as us sufferers all know, it comes on so quick without warning, i got that injection on june30th or 31st 2008, and for the FIRST TIME IN MY LIFE SINCE I WAS 18 i am 45 now, I HAVE NOT HAVE MY LEG GIVE OUT OR ANYYYY SIGNS OF SCIATIC. THE PERIFORMIS MUSCLE STRANGLED THE SCIATIC NERVE, THE INJECTION MUST HAVE SLAPPED THAT NERVE AROUND A BIT,BECAUSE KNOCKING ON WOOD NOW,, I HAVE YET TO EXPERIENCE THAT HORRIBLE PAINFUL THING AGAIN,,, sorry for yelling, i have had an epidermal where the anisthisiologist could not get the needle in because of the spasms, and that was just the novacain, fianly i had it done, the epidermal no effect at all, the trigger injections,,,,, maybe helps for a couple of weeks,, please fil me in on this injection that caused diabetes, i would greatly appreciated? readers? docs? your coments? should i go and get some sort of test now? i have been geting injections for almost three years now... HELLLLLLLLLLLLLLLLLLLLLLL (P) Thank you, Linda

starr

10/11/09 9:53am

it doesnt always happen , however do you wake with night sweats, are you thirsty a good bit of the time ? are you dizzy at times? well a friend of mine was getting these same shots adn i started telling her about the side effects, she said she had all signs i tested her with my tester and her sugar level was 200 with no food . that isnt good. yes i suggest you at least get tested if you have any of those sign. when i was at the drs i was talking to this guy and this other guy was sitting there and said the same thing it caused him to develop type 2 diabetes . and the guy we were talking to had all the signs . he was going togo get tested. there is a high amount of steroids in the epidural blocks. no one tells you that. no tells you that it also can cause osteoarthritis. i almost felll when they diagnosed me. with steroid induced type 2 diabetes. then if you do have it and you tell the dr that wants to give you the shot they will tell you that isnt true. i kknow of at least 5 people includung my self that have been diagnosed with it. one guy was diagnosed with colitis, they prescrided the medrol dose pack over and over for 6 months and thats how he got it. he is currently on shots now . he was diagnosed 8 years ago. my aunt whom hurt her back was given the same shots as you and i adn she was diagnosed with steroid induced type 2. all im saying is keep a good eye on sugar levels and if you have any of the signs i listed above go toyour family dr to be tested. they can do a a1c level which is a sugar test to tell what your sugar levels have been running fo rthe last 2 months and that might help you. you might be a lucky one and have not been effected but i dont see how. i am 5ft 7 and 134 lbs. i have had 5 children the oldest being 21 and youngest being 15. they at first told me i was over weight i couldnt see how but i really cant loose any more weight my body wont let me. but i just couldnt figure that out. so i started to talk to people and found out that it was a crock. they just want to see if the shots stop the pain and sometimes t they do for a period of time. but they dont tell youwhat can happen if you continue to get them and the possable side effects. and if you ask they will tell you it will raise your sugar level but it will come back down. that is not correct. it does on soem people but on others it done. so just be careful and be checked often.take care.

linda

10/11/09 10:30pm

thank you for sharing that, i did not know that injections could cause that,,,,,,,,,,i am a walking pin cushing,, mostly i get about three trigger injections, last monday, i got five up my shoulder, and into my neck,,i willll talk to my doctor (primary about this one,) thank you

Linda

10/11/09 10:44pm

I am constantly drinking water, or other things i am not suppose to because of pain meds ( ok ok,, a cold beer once in a while) ... i go to the bathroom alotttttt. I have the sweats,,, buttttt,,i am taking Atenolol 25 mg which is used for high blood pressure, but my doc gave me a script because i am in menapause,, groowwllllllllllllll. and the night sweats were waking me up everynight SOAKING WETTTTTTTTT,,NO LIE,, IT WAS HORRIBLE,,,, the atenolol stopped the sweats pretty much, i work in the med field, i have blood testers all over,, but, my diabetics all have a "code" or something programmed into theirs,.... say i HAPPENNNNNNNNNNNNN to stumble upon one and test my sugar, i want to say 50-80 is good, am i correct??? i just might stumble upon a b.s. kit tomorrow,,,,,,,,,, thank you Linda

dayk64

6/ 4/09 12:07am

I love that list. In fact, I have had about 6 out of the 13 said to me. Having FM I don't look sick just really exhausted all the time. People can be so judgmental some times. Seriously, they have no clue how hard it is to live with chronic pain. I have had chronic pain since 2003. I know that is like a newby compared to some of you out there. If there is anything I can do to help any of you, please let me know. I already love this site. Thanks sis for telling me about it. Love ya, Kim

seat17b

6/ 4/09 12:34pm

I totally agree with you and have had a few people say some of these things to me, mainly the comments,"You don't look sick"... I am happy that I don't look sick, but it does nake it difficult to explain to others why I am moving slowly or can't do too many things any more. At least my family understands, as do my friends as they have watched me over the years get worse with my fibromyalgia, osterarthritis and RSD (also know as CRPS) which is the neuropathic pains that started in one toe immediately after surgery and 10 years later has spread to both feet and up to my knees in both legs and is now getting worse in both hands and all my fingers. I have been under the care of a couple of fantastic Pain Care Specialists all this time, once I was diagnosed (quickly, thank God) by the orthopedic surgeon who did the foot surgery.

I stopped working in 2004 and by 2006 as I was taking so much medication for my pain as well as high blood pressure etc and it was quite apparent that I was in no condition to work as I can't sit, stand or lie down for very long at a time and my power of concentration is virtually nil. It took me 2 1/2 years to get approved after I filed for Social Security Disability because my private health insurance costs were outrageously high (I am considered to be un-insurable by the insurance industry due to my pre-existing health issues and this HMO policy, cost me to start $2400/month and when I finally was able to use MEDICARE in April 2009, the monthly cost for this insurance was $4600/month!) My IRA was what I have been living on since I stopped working and over this relatively short time, I have gone through 50% of the money I had saved over 32 years of working - that is supposed to last me for the rest of my life.

STRONG SUGGESTION for anyone applying for Social Security Disibility is to hire an attorney from the start. I did it myself and after 2 years of getting no where fast with the Social Security Administration, I hired Binder and Binder and they took over for me and got it moving. I was approved 6 months later and the cost for their services was taken out of the initial amount of money Social Security paid out in back pay to me so it didn't mean anything out of my pocket (the government cut them a separate check and sent me the balance).

sudsblueii

6/ 5/09 8:27am

after reading your reply, it was as if i had written it myself. i, too, have just about everything you do, except i am 46 years old and am just beginning the process for S.S. but thanks to you i am hiring an attorney right off. God bless. and Thank You

mcshortcake

8/28/09 11:11am

i applied for legal aid after 3 years of trying on my own. within 2 months, i was approved. they didn't give me one lump sum. i received $12,000 in four payments. I only have medicaid, so it was extremely hard to find a pain management specialist, but once I did, in 2000, he has taken care of me ever since.I'm always judged because of the side-effects of my meds.(morphine) i was labeled by everyone in my neighborhood a junkie. It's NOT fair, or funny.

mersilkee

9/26/09 6:12am

I've had chronic pain for years. The two most annoying statements about my pain and my pain meds that I have recently received came from my mother and my father. My mother said, "You need physical therapy. I don't understand why your husband won't get you home health PT. It has done wonders for me. You need to get up out of that chair and have a better quality of life."

The other statement came from my father who was leaning down to kiss me after he had apologized for yellling at me. He caught a glance at my Methadone bottle and said, "You had better get off that stuff or you are going to end up like Anna Nicole Smith."

I have explained my pain condition and pain management therapy to my parents for years. I guess my father had his hearing aides turned off.

Re. disability. I really could use the money right now. My husband is out of work and I haven't worked for years. I applied years ago and was turned down. I tried to contact a lawyer but they all told me I would have to get turned down first. After that happened, my husband had a job where he would have to commute to a large city on a train that took 2 hours to get there and 2 hours back. We also had a small child.

I became progressively more disabled and he had so much to do when he was at home, He had called an attorney to see about applying again and he was told that we would have to get all the names and addresses of the doctors who treated me since I first started having symptoms. As of now that list is probably at least 50 doctors spreading out to places such as the Mayo Clinic where I saw several doctors, to New York, to Johns Hopkins, Boston and Dallas metroplex.

We have been staying with different relatives and the copys of the records that we do have are in storage somewhere.

I recently found out I am dying from a degenerative brain disease which they think may be caused by a metabolic disease brought on by an autoimmune problem. I also have quite a few diagnoses that have developed over the years since I had RSD. I have a theory that there is one big master monster intruder that is causing all of these things to happen. I've been sick with one chronic illness or another ever since I was a little girl and was diagnosed with an IGG immunity problem.

But, no doctor has ever been able to connect the dots. My husband spoke recently to another lawyer about disability and he also said we would have to come up with all the names of doctors and addresses, etc. and he said that we need to make sure we have all the records we can get from the first three years of my illness. The first three years was a flurry of going from doctor to doctor, many ER visits and some hospital admissions by attending and consulting doctors that I never knew their names. Also, there is no valuable information there. Just a lot of tests which mostly came out normal and no diagnoses.

So we can't get my records together until we have a place of our own and when we do, we won't have alll the doctors names. I wasn't thinking the first three years that I was going to be disabled for the rest of my life. And like I said if the first three years weighs heavily on their decision, then I am likely to be turned down again.

chronic-pain/c/478157

10/ 1/09 12:55am

Mersilkee,

You don't say how long it has been since you last worked. I used to be a paralegal who represented people who had been denied S.S.D. and S.S.I. benefits. It has been a few years ago, but the system hasn't changed that much.

You do not need to go back 20, 30 or 40 years ago. The SSA is only concerned with 20 of the last 40 quarters of your work history and whether you have a statement from a doctor that says you cannot work for at least the next 12 months or are permanently disabled. Once you apply, you may receive a first denial letter. That is when you need to contact an attorney.

Just gather the latest medical information you have. Forget about what happened all those many years ago. You are only causing yourself more stress. If any attorney tells you that you need your childhood medical records, he's nuts! Go to someone else.

One other hint: Most of us with FM, also suffer from depression. Add that as part of your illness. It is tough for social security to prove you don't suffer from a mental illness.

Good luck, my friend!

justa stray

6/ 4/09 12:42pm

How true that list is! Unfortunately people nowa days don't seem to care or have compassion for ANYONE. Chronic pain has and is an issue for me too. People outside my circle who make snide comments are just UNEDUCATED about this condition and so many more that accompany it. So, speak up, sooner or later they will "get it" or do as I have done, just move on. Keep the friends that really matter.

Anonymous

8/29/09 10:44pm

It is TOO TRUE! I got very pissed off with a family member who thinks that I am faking knee injuries to get surguries (GET REAL!!!!!!!) or that I DON'T have Fibromyalgia...I told him to try living in my body for 24 HOURS! He shut up and looked like he shit his pants......I want a shirt with all those 13 things not to say!

osmike

6/ 4/09 1:21pm

it is incredible, how many of the thirteen i've heard. i'm going to have to look at that again to see if there are ANY that i haven't. it gets worse, for almost 11 years i have suffered with DDD and the SIDE-EFFECTS of prescribed medicatons, i'm almost not sure which has been worse. after an unsuccessful fusion and oral opiates for the pain, i was bed-ridden and had lost over seventy pounds, i couldn't keep food down. a little elderly hospice nurse came said to me " son, your too young to die, you need some pot!!!!" if i wasn't already in bed, i would have fallen down, from laughter. i tried, it worked, and it is the only reason i am here today.

this is a QUALITY OF LIFE issue, and WE, as patients, worked hard to enable of state senators to pass S.B.1381 in illinois by EDUCATING them on the NEED for this law. and 30 of 59 (the EXACT amount we needed) had the courage, compassion, and common sense to allow patients access to something the CHINESE have used for over 5000 years. as a representative of this "cause", i have come across a few more you might want to ass to the list.

14) "but you get good drugs"-can i have some?

15) "your going to grow your own, cool"-can i have some??

16) "if the law passes, EVERYBODY will have glaucoma or a back problem"--they don't want ANY of that!!! LOL!!

most of the problem comes down to just plain ignorance, and there is a little saying my grandpa used to have for that, "you can't fix STUPID!!!!"

GOOD LUCK TO ALL!!! and may your pain levels be LOW!!!!

MIKE G.

MANTENO, IL

sofyy

6/ 4/09 1:24pm

YOU ARE RIGHT. no one really knows what is a real pain only the ones that carried it everyday in their lives. people just misunderstand what is the real feelings for a person with pain. but maybe is because they just see us from the outside they can't see our hearts and they can't find what is real inside, is only a big cloud fill of sadness and pain; we really want to feel free of pain and feel the joy of happiness everyday in our lives. atte. sofyy

karina

9/17/09 2:32pm

everyone's articles were great , but you were to the point make and those exact words come out of my mouth daily. I have three kids and no husband (he coulnt take dealing with me and my illness) I feel sooo alone and have no body that understands.

SOFYY

9/17/09 5:56pm

HEY KARINA THANKS FOR YOUR GOOD COMMENT. I UNDERSTAND NOT FUN AT ALL BUT SOME PEOPLE DON'T KNOW OR UNDERSTAND WHAT THAT LITTLE WORD MEANS AT ALL. AND MAYBE THEY NOW THE MEANING OF THE WORD BUT THEY DON'T WANT TO ACCEPT THAT EVEN THE PERSON THAT LOOKS PERFECT CAN FEEL THE PAIN INSIDE OF THE HEART AND INSIDE OF THE BODY. BECAUSE PAIN IS REAL. GOODLUCK..

Tammy

6/ 4/09 8:50pm

i agree i hate when people judge us that we don't look sick or don't think we are in pain. i suffer from ddd and spondylythesis of the spine spondylosis of neck and have just recently been diagnosed as having fibromalygia as if the others was not enough. i try very hard not to let my pain get to me but i have a really hard time sometimes.people have no consideration for you if you look healthy i went to my daughters graduation last night and stood the entire time for lack of seats and they thought i look healthy now i can't move today. thanks for listening Tammy

kasssyk

6/ 5/09 6:38am

i also would love to have a bag that says those rude comment on it!! I say walk a 24 hr period in my shoes than tell me youre 13 comments!!!

debbie

6/ 5/09 7:12am

AMEN! yes-i would buy that tote! it would be neat to have that on a t-shirt too.

people have said all of those to me at one time or another.i could just strangle them-lol!

take care!

debbie

Blumrninglry

6/ 6/09 2:49pm

I believe that the site you are looking for is: http://www.invisibledisabilities.org/

Take a look and order the pamphlet (I leave one in the bathroom for everyone to read).

Remember that you are NOT alone, I have been a member of this site for almost 7 years!!! Chronic pain is very limiting but you can cope with a little help here and there!

Praying you have decreased pain today!

Terry

Scooter

6/11/09 6:22pm

Thank you for the name of the web site. I joined the group. Have a low pain day. Scooter

a mom

6/ 8/09 11:07am

I am so happy that I came across this list, I admitt that I have said a few of these comments, and I feel bad about it, Sometimes I would say it thinking my son will start being more active, do more things to take his mind of the pain and sometimes I thought maybe the pain isnt so bad and he feels that it is. Thanks for the list, this helps me understand more how he feels. His own doctor that treats his depression told him and I, that he is making this pain up for attention and I remember my son wanted to cry and he told him he was not making it up. Thnaks again

Anonymous

6/11/09 5:26am

Do they ever stop to wonder who on EARTH would pick pain and depression to get a little attention? Dropping your pants at the mall is a heck of a lot easier!

Suzane

6/ 8/09 3:10pm

Those are really good. I agree with you. People just have no idea until they have walked in our shoes. I wrote all those down in my diary!!

llong1113

6/ 9/09 11:24am

I HAVE HEARD EVERY SINGLE ONE OF THESE!!!!!! I WISH THESE PEOPLE COULD WALK IN OUR SHOES FOR JUST ONE HOUR, THEN THEY WOULD SHUT THE F---- UP!!!!

Megs

6/11/09 4:46am

Here is a link to the site that sells thetote bag and t-shirts with the 13 things...

http://bags.cafepress.com/item/chronic-pain-tote-bag/56131310

Let's all wear or carry one when we can!

Scooter

6/11/09 6:27pm

Thank you for the name of the web site. I'm going to check it out and buy whatever I can afford. Have a low pain day. Scooter

jerry hesch

6/11/09 7:01am

The very term "chronic pain" is painfully vague! There are models of disability that interpret it as a lived experience, elaborating on how it impacts multiple domains of one's life. Key words to search would be medical, social model of D, Nagy, NIH model, etc. Ideally, there would be a better descriptor than "chronic pain". A brief phrase with qualifying and perhaps quantifying acronymns, numbers, etc could encourage conversation versus a stereotypical reply, or muted responses. The very term "medical disability" is also vague, an easy term to provoke purported understanding. Unfortunately, at times explanatory effort can be misinterpreted as complaint. Real listening, being heard for what is, evan if missingg the ideal, is craved for in this community. Not a common thing in our disposable, McDonald's, quick, convenient and "all Amercan" society.

jerry hesch

6/11/09 7:10am

p.s. dO YOU KNOW WHAT THE INTERNATIONAL SYMBOL FOR DISABILTY IS? nO, i AM NOT SPEAKING OF THE MOBILITY HANDICAPPED SYMBOL. THE INTERNATIONAL SYMOL FOR DISABILTY IS THE SAME AS FOR CHRONIC PAIN ARE ONE AND THE SAME. THEY ARE:

YES, THAT IS IT!

jerry hesch

6/11/09 7:18am

Any reason why the states should give considertion (or not) to including "chronic pain" in their hate crime legislation? Has anybody who has ever experienced severe chronic pain ever feel like you were a moving target, easily taken advantage of, for an inabilty to focus on the moment to moment vissitudes of life? Did you ever feel like you had a stamp on ypur forehead (perhaps in response to one's chronic pain affect) that says "vulnerable, please take advantage"? Is cognitive challenge a factor when pain is severe (yes, see the body of reserch)? I am so much better, but give a few nites of insomnia in response to residual pain and dysaesthesia, paraesthesia and I am there. Life is short, but art and memeory are long.

Nicoletti

6/11/09 9:50am

I too hate this remark from the people who really don't understand what chronic pain is all about!Do people really think that is what we really wish for.My profession was more than a job,it was my passion! I was a good provider,and worked hard,obviously too much! It has been 5 years before I actually had a diagnosis in hand. Social security disability kept denying over and over until an administrative judge came to my area to hear my case.The judge was a kind man who repeatedly apoligised for the over look on my case.After the judge identified my diagnosis as adhesive arachnoiditis,which is a incurable disease involving the scar tissue surrounding the nerve roots at lumbar levels 3-4,4-5 and S1.This disease is listed as a spinal cord injury under state and federal guidelines! Currently I have a spinal cord stim implant a.k.a a internal programable generator operated via a remote control I wear on my belt. I also take pain medications as well for this chronic problem.Have you been diagnosed with adhesive lumbar arachnoiditis?

Scooter

6/11/09 6:20pm

I haven't been diagnosed with what you have, but I do have scar tissue on the nerve roots in my lumbar area. I've had 5 lumbar surgeries and that is why I have the scar tissue. I have nerve damage along with this. I'm glad the nerve stimulator works for you. I was offered that, but I've declined so far. Good luck.

Scooter

one lass

6/20/09 7:12pm

oddly it is my best friend who is disabled and in a lot of pain herself, who gives me the hardest time. It makes me so sad, so furious sometimes that because she is obviously the worse off of the two of us, that she works me like a dog. I have a hard time saying no to her and end up pushing myself beyond my limits to care for her, her dogs and her children.even to the point of giving her, her twice monthy treatment for her auto immune disorder where I must hook her up for sub cu delivery of her meds, 8 needles in the poor girl's tummy and arms. It's dreadfully hard for me as I have an intense fear of needles. It's like she wants to compete for who feels the crappiest and she totally discounts my pain and fatigue telling me to suck it up, if she can handle her very complex and painful problems, I should be able to endure my pidlling issues with fibro, surgical adhesions, exhaustion and migraines. It really makes me sad and distresses me that I am starting to resent her so badly. We have been friends for over ten years. And my husband is in total denial there is anything wrong with me at all as are his parents. I quit working rather abruptly after 20 years and now everyone seems to loathe me. I seldom talk about it, no one cares to hear it, and I can't endure to blank looks in any event. If it weren't for my painting and writing, I'd be lost.

14. that's nothing, you've got it easy

meandbebe05

9/24/09 5:01pm

I totally understand where you are coming from, I too, have fibro and surgical adhesions from where I had a gastric bypass and ovarian removal and gallbladder surgery, the scar tissue has adhered itself to my intestines and its incredibly painful, but I got into trouble with my counties DHS services because of the meds I was prescribed, and lost custody of my daughter temporarily because my mom called them with "concerns." When the police showed up at my house, they saw all my pill bottles and took my daughter, now I am on no pills at all and I have to submit urine tests routinely to make sure I am not on pain meds. I have been diagnosed with all these things by a medical doctor, everyone pointed the finger at me and said I was "addicted." So now I get to suffer without any help at all. My mother turned me in, even though she herself is on heavy narcotic meds for degenerative arthritis. Her doctor just keeps upping her meds to "keep her comfortable." But for me, I was "abusing" them. Talk about frustration. Now I am forever going to be labeled a "drug addict".

SAyrea

6/21/09 5:31am

Yes, I've heard them all, too, and some of them have come from doctors! The one about "not looking sick" has actually been said to me by a few docs over the years. I've reached the point that I don't much care what others have to say. They don't feel what I feel; get only 1-1 1/2 hours of sleep at a time; they don't struggle to pay for their prescriptions because they "make too much money" so their opinions don't mean anything to me anymore.

Like you, I also worked over 20 years and had risen up the ranks, loved my career and hoped to work their until I retired. I was a systems analyst/programmer and had worked on the side developing software systems for a company that didn't have their own IT staff. Unlike you, I got laid off before I reached the point of going on long-term disability pending obtaining SSD; that would have made my life so much better. The company I worked for all those years had been laying off for so long that we went from 2,500 to perhaps 700 employees by the time I got the axe. It wasn't performance; it was sickness and, if you are already operating bare bones, who do you let go? The one most likely to miss time for any reason; be it their own sickness or illness in the family. On that subject (of laying off or not paying employees while they are sick), I heard a preacher once ask "If you oxen got sick, would you stop feeding them?" No, of course not. But we don't treat people as well as oxen in this country. You have to survive the hurdles of no income in order to get income through SSD. I didn't have to have a hearing but it still took about 20 months from beginning (filing the first time) until I was approved. It took another 3 months before I saw any money and, at that point, 5 months before my Medicare took effect. You have to go without coverage for 2 years and 5 months before SSD kicks in unless you qualify for Medicaid. The more money you made when you worked, the longer you have to go without medical coverage and the less prescription medication coverage you have. The downside for those folks is that anyone who receives only Medicaid (SSI) will have difficulty finding specialists who take Medicaid. Other than that, they gualify for more assistance than I do even if the number of diseases (one way to qualify for SSD) inhibits my ability to pay for the number of specialists I have to see (I have a total of 8 specialists) and a list of meds, most of which I can't afford to get for the better part of the year. Once I hit the gap, I can only get the most required of the medications I take and none of those are brand. I can't afford even one brand medication during the gap. The chances of my reaching the catastrophic coverage without becoming homeless first is unlikely so I do without necessary medications for more than 1/2 the year.

There is no ideal situation for anyone. People without chronic pain don't understand that one of the first things you lose is your ability to sleep. They think that, one of the benefits of being disabled, is that we can sleep as late as we want to every day. They also think that we can do whatever we want to all day like go to the beach (I live in Florida), go shopping, visit people, etc when the truth is that I'm so tired from being up most of the night again and the pain is too widespread today and I'm having a tougher month financially because the coverage gap covers very little of even the Tier 1 generics that what few scripts I get cost too much but caught me off guard so now I'm stuck and tight the rest of this month. It hurts too much to drive even if I could afford to go do something and felt well enough to do it. However, if that were the case, I wouldn't be on SSD. You have to go through a lot to get here and you continue to go through a lot; you just have money coming in every month and Medicare health insurance. The sick and the elderly understand the implications of that. While your at work plan costs more, more of you can afford to see your doctors and get your scripts when we can't.

Don't expect those who haven't walked in your shoes to not understand; how could they? Just be compassionate with yourself and others who are suffering and remember, there will always be someone who suffers more and somone who suffers less than us. We just don't know who they are so we must never judge another who suffers from chronic pain.

nodepositnoreturn

6/30/09 8:21am

Wow, you look great. I swear the next person that says that to me is going to get a black eye !

Diane

7/ 8/09 3:17pm

Those sure hit home for me, I have been fighting cluster headaches for almost 10 yrs now and am on SS Disability as well. It sounds horrible but I almost wish that I had lost a limb or something visible so that people wouldn't look at me and assume that I am faking pain. I am going back to college to try and finish my degree in school psychology. Its the only job I can find that might allow me some leeway with a schedule that I can work around my headaches. I don't know if I can do it but I damn sure am not giving up yet - but it really frustrates me to hear those statements. Especially #10, which I get all the time. "How would it be to be able to not have to work and just enjoy the summer - gee wouldn't that be nice." If I could have given my level 9 headache to that guy at that moment I would have. He might make it 5 minutes and he would hit the floor in tears! People don't seem to understand that when you live in pain all the time you learn to cope and for me I have learned to hide it very well, because I hate being disabled, it makes me feel weak. I had an amazing job in the computer industry for 15 years, I had to leave my job because of the headaches back in 2001 and been on disability since. I just hope that people can become a little more educated, and those who refuse to believe it...I think we should be able to transfer our pain to them for a little bit! :) Hang in there, and thx for the list. I am printing it out and posting it on my fridge as a gentle reminder.

JR55

7/17/09 2:38am

I know what you're saying! I also would rather be working than be on disability. Yes sometimes I do feel pretty good, but that isn't the norm.

Since 2001 I have been diagnosed with RSD, Rheumatoid Arthritis, Restless Legs Syndrome, Sleep Apnea and have had cervical disk replacement surgery, 2 shoulder surgeries, wrists surgeries, depression etc. Before all these health issues I was a very active person. I loved to play sports, ride my bike, swim etc. now there isn't much I can do that doesn't cause pain. So now when I hear anyone say one of those 13 remarks I would like to tell them that I'd trade places with them any day. It's been a long 8 years since my health problems started and hearing people say things such as these make me think that people just don't think or know what they are saying. Don't say these things until you have walked a mile in my shoes or anyone elses shoes who have health problems.

amymzj

7/25/09 4:50pm

I am with you on this one. The one that gets me the most is #1. Just because you don't see my pain doesn't mean I'm not in pain. I smile while in public (if I can) and do all that I can but people don't know what goes on at home when I can't make it out. My husband and kids are the only one that really knows how bad it is. It's them I feel bad for because they bear the burden everyday of missing my contributions to the family because I'm always laid up.

Oh well... complaining about it never helps so I'll stop whining

Amy

Bee

7/28/09 7:34pm

Thank you for sharing 13 Things You Don't Say to Someone With Chronic Pain. I have heard every one at one time or another. It is so true that people who are not experiencing chronic pain do not understand.

RS-M

8/ 5/09 5:31pm

I know I'm not the only person in pain but mine fm has flared up big time in the last few months after many years of just being discomfort and an annoyance. My calves ached, my neck and shoulders are always stresses; my forearms ache. I have Dequervain's tendonitis and a loose rib that is out of whack more than it's in recently. I'm always exhausted, my gut is acting up and I'm prone to cluster headaches. I get through my day and go home and curl up with ice packs and the dog. My Saturdays are doctors, physical therapy and errands. Sunday I sleep and read. I am better off than many, and worse than some. I don't expect people to pet my head and tell me how sorry they are for me, nor would I want that reaction. Still, it would be nice if some people would at least understand that my pain is real and if not as bad as their pain, it's still effecting my quality of life. I know a lot of people with R.A. Some are treated and doing alright, some are living with constant flare-ups. I am concerned about their pain and am understanding as to its impact on their lives. Some of them understand and appreciate my situation. Some do not and no matter what state I am in they always have to one-up me and pooh pooh my own discomfort and exhaustion. It is as if my pain is meaningless and trivial because it is not RA.

I have tried to let it roll off me but sometimes it is hard to take.

Anyone else experience this type of "my pain's worse that your pain" attitude?

Anonymous

8/28/09 12:04am

I get to stay home all day, all by myself and suffer, whoopee :), am I having fun yet? Yeah , I know bad attitude . But after almost twenty years of this fun I get to have because I don't work anymore, well, I tend to lose it when someone asks me a question like that. To me it implys, that I really could work, but I just was able to fool the disability commision etc. . Oh well.

But anyway, thanks for sharing those things off that tote bag./ It reminds me how people see people like us, who live with chronic conditions.

Mike O.

meg

9/12/09 10:01pm

I'm sure there are more than 13 things not to say, because I know another one. The statement I've heard that makes me the most disgruntled is "Well, you do everything else you want to do". If they only knew! Somedays it seems like being a prisoner in your own home. I believe that even my family thinks at times that I'm using this as an excuse not to do whatever it is they are asking of me.

Linda

10/11/09 11:12pm

1) none of us probably never met-yet we care.

2) none of us may not have anyone to talk to that understand, yet we care

3)none of us probably will never know one another, yet we care

4)none of us know exactly each others pain levels, but we care

5) none of us might not care who we talk to because, we care

6 none of us may not have the same exact symptoms, yet we care

7) none of us may have ANYONE who undersands our daily struggles, yet we care

8) none of us may not have friends OR family that will ever understand, yet we care

9) none of us have the same doctors, yet we care

10) none of us may not be all doctors, yet we care

11) All of us have to put up with ignorant people from what they dont see,, but guess what?

12) in this room we have each other, we have understanding, we have sympathy, we can cry, or laugh,, do you know why?

13) BECAUSE WE CARE!!!!

NOW THOSE ARE THE 13 THINGS TO SAY AND BELIEVE. BECAUSE,,,,,,,, WE DO CARE !!!!!!!!!!!!!!!!!!!!!!!!!!!!!! the hell with the others,,, its in this room, where WE ALL CARE......

LINDA

restmin

1/24/10 12:24am

The list looks familiar and may have been a form of mine for Invisible Illness Week. The shirt is here

There is also another one, "33 Ways to Encourage a Chronically Ill Friend."

Leslie

3/30/12 4:19pm

It is great to see this list and feel like I am not alone in this struggle. When I hear these statements, it hurts. My pain doctor will say I am not like "the other patients" because "I look nice." I want to look decent when I leave the house. I try to add humor to situation b/c if I don't I might burst into tears. It's part of my way of coping but they see it as Wow, she's doing fabulous. "Looks great, smiling. Etc." That same doc needs to see me AT HOME. I rarely leave the house. I had to quit my job, I don't drive anymore. I'm 35 and single. Don't date. This isn't what I pictured at all for myself. Yet my mom says "change it." "get up" and " do something." She doesn't understand how the chronic body feels. I try to do what I can but it's not the same. A few years ago, after a surgery everything changed for me. I have chronic nerve pain due to Neurofibromatosis and the pain after surgery didn't subside like normal and things never returned to "me." I became a chronic pain patient. I didn't know it then but I know it now. People can be harsh -- even the people who "love" us. I had an aunt say worse things than on this list to me because she has NO CLUE. She things because she calls and keeps up every so often that she "gets" it. At all. When I was low on funds, she told me, "get a part-time job." I don't want a 1/2 time job. I had a career in pr writing / communications at the university-level. I edited a faculty-staff newsletter. I was also taking grad classes in creative writing (my true love) and had to give that up too. That broke my heart. Still not well w/ that. I saw a job in the local paper recently perfect for me. PR writer/editor in a dept I would love at the local university. And I knew I could apply but realistically it couldn't happen. 40 hr/weeks I went to the doctor yesterday and took care of my dogs & my moms beforehand and was worn out when I got home. That's my new schedule. But people don't GET it. PEople will ask Are you well yet? Damn, sure wish I was. But chronic means what? Look it up I want to tell them. Apparently, you don't get the term. :)

13 Things You Don't Want To Say To Someone With Chronic Pain

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