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joprud 06-16-2003 09:51 PM

To All....Re: Living in Chronic Pain..................
Hi Guys,

Came across this on the back problems boards (Baxter from the BPB was sharing this with the folks there...Thanks Baxter...she didn't know the author)...thought I'd share it with you guys...Ain't it the truth!

Having chronic pain means many things change, and a lot of them are invisible. Unlike having cancer or being hurt in an accident, most people do not understand even a little about chronic pain and its effects, and of those that think they know, many are actually misinformed.
In the spirit of informing those who wish to understand ...
... These are the things that I would like you to understand about me before you judge me...
„„«« Please understand that being sick doesn't mean I'm not still a human being. I have to spend most of my day in considerable pain and exhaustion, and if you visit, sometimes I probably don't seem like much fun to be with, but I'm still me-- stuck inside this body. I still worry about school, my family, my friends, and most of the time - I'd still like to hear you talk about yours, too.
„„«« Please understand the difference between "happy" and "healthy". When you've got the flu, you probably feel miserable with it, but I've been sick for years. I can't be miserable all the time. In fact, I work hard at not being miserable. So, if you're talking to me and I sound happy, it means I'm happy. That's all. It doesn't mean that I'm not in a lot of pain, or extremely tired, or that I'm getting better, or any of those things. Please don't say, "Oh, you're sounding better!" or "But you look so healthy! ̈ I am merely coping. I am sounding happy and trying to look normal. If you want to comment on that, you're welcome.
„„«« Please understand that being able to stand up for ten minutes doesn't necessarily mean that I can stand up for twenty minutes, or an hour. Just because I managed to stand up for thirty minutes yesterday doesn't mean that I can do the same today. With a lot of diseases you're either paralyzed, or you can move. With this one, it gets more confusing everyday. It can be like a yo-yo. I never know from day to day, how I am going to feel when I wake up. In most cases, I never know from minute to minute. That is one of the hardest and most frustrating components of chronic pain.
„„«« Please repeat the above paragraph substituting, "sitting", "walking", "thinking", ˇˇ§§concentratingˇˇ ̈, "being sociable" and so on ... it applies to everything. That's what chronic pain does to you.
„„«« Please understand that chronic pain is variable. It's quite possible (for many, it's common) that one day I am able to walk to the park and back, while the next day I'll have trouble getting to the next room. Please don't attack me when I'm ill by saying, "But you did it before!" or Oh, come on, I know you can do this!ˇˇ ̈ If you want me to do something, then ask if I can. In a similar vein, I may need to cancel a previous commitment at the last minute. If this happens, please do not take it personally. If you are able, please try to always remember how very lucky you are--to be physically able to do all of the things that you can do.
„„«« Please understand that "getting out and doing things" does not make me feel better, and can often make me seriously worse. You don't know what I go through or how I suffer in my own private time. Telling me that I need to exercise, or do some things to get my mind off of it ̈ may frustrate me to tears, and is not correct if I was capable of doing some things any or all of the time, don't you know that I would? I am working with my doctor and I am doing what I am supposed to do. Another statement that hurts is, "You just need to push yourself more, try harder..." Obviously, chronic pain can deal with the whole body, or be localized to specific areas. Sometimes participating in a single activity for a short or a long period of time can cause more damage and physical pain than you could ever imagine. Not to mention the recovery time, which can be intense. You can't always read it on my face or in my body language. Also, chronic pain may cause secondary depression (wouldn't you get depressed and down if you were hurting constantly for months or years?), but it is not created by depression.

„„«« Please understand that if I say I have to sit down/lie down/stay in bed/or take these pills now, that probably means that I do have to do it right now - it can't be put off or forgotten just because I'm somewhere, or am right in the middle of doing something. Chronic pain does not forgive, nor does it wait for anyone.
„„«« If you want to suggest a cure to me, please don't. It's not because I don't appreciate the thought, and it's not because I don't want to get well. Lord knows that isn't true. In all likelihood, if you've heard of it or tried it, so have I. In some cases, I have been made sicker, not better. This can involve side effects or allergic reactions. It also includes failure, which in and of itself can make me feel even lower. If there were something that cured, or even helped people with my form of chronic pain, then we'd know about it. There is worldwide networking (both on and off the Internet) between people with chronic pain. If something worked, we would KNOW. It's definitely not for lack of trying. If, after reading this, you still feel the need to suggest a cure, then so be it. I may take what you said and discuss it with my doctor.
„„«« If I seem touchy, itˇˇ |s probably because I am. It's not how I try to be. As a matter of fact, I try very hard to be normal. I hope you will try to understand. I have been, and am still, going through a lot. Chronic pain is hard for you to understand unless you have had it. It wreaks havoc on the body and the mind. It is exhausting and exasperating. Almost all the time, I know that I am doing my best to cope with this, and live my life to the best of my ability. I ask you to bear with me, and accept me as I am. I know that you cannot literally understand my situation unless you have been in my shoes, but as much as is possible, I am asking you to try to be understanding in general.

In many ways I depend on you - people who are not sick. I need you to visit me when I am too sick to go out... Sometimes I need you help me with the shopping, cooking or cleaning. I may need you to take me to the doctor, or to the store. You are my link to the normalcy of life. You can help me to keep in touch with the parts of life that I miss and fully intend to undertake again, just as soon as I am able.
I know that I asked a lot from you, and I do thank you for listening. It really does mean a lot.
1. People with chronic pain seem unreliable (we can't count on ourselves). When feeling better we promise things (and mean it); when in serious pain, we may not even show up.
2. An action or situation may result in pain several hours later, or even the next day. Delayed pain is confusing to people who have never experienced it.
3. Pain can inhibit listening and other communication skills. It's like having someone shouting at you, or trying to talk with a fire alarm going off in the room. The effect of pain on the mind can seem like attention deficit disorder. So you may have to repeat a request, or write things down for a person with chronic pain. Don't take it personally, or think that they are stupid.
4. The senses can overload while in pain. For example, noises that wouldn't normally bother you, seem too much.
5. Patience may seem short. We can't wait in a long line; can't wait for a long drawn out conversation.
6. Don't always ask "how are you" unless you are genuinely prepared to listen it just points attention inward.
7. Pain can sometimes trigger psychological disabilities (usually very temporary). When in pain, a small task, like hanging out the laundry, can seem like a huge wall, too high to climb over. An hour later the same job may be quite OK. It is sane to be depressed occasionally when you hurt.
8. Pain can come on fairly quickly and unexpectedly. Pain sometimes abates after a short rest. Chronic pain people appear to arrive and fade unpredictably to others.
9. Knowing where a refuge is, such as a couch, a bed, or comfortable chair, is as important as knowing where a bathroom is. A visit is much more enjoyable if the chronic pain person knows there is a refuge if needed. A person with chronic pain may not want to go anywhere that has no refuge ( place to sit or lie down).
10. Small acts of kindness can seem like huge acts of mercy to a person in pain. Your offer of a pillow or a cup of tea can be a really big thing to a person who is feeling temporarily helpless in the face of encroaching pain.
11. Not all pain is easy to locate or describe. Sometimes there is a body-wide feeling of discomfort, with hard to describe pains in the entire back, or in both legs, but not in one particular spot you can point to. Our vocabulary for pain is very limited, compared to the body's ability to feel varieties of discomfort.
12. We may not have a good "reason" for the pain. Medical science is still limited in its understanding of pain. Many people have pain that is not yet classified by doctors as an officially recognized "disease". That does not reduce the pain, - it only reduces our ability to give it a label, and to have you believe us.

Joanne :wave:

------------------[list][*]Sept‘63,fall on back on stairs,compression fractures of T6 and T8[*]1993 X-ray Diagnosed DDD [*]Nov,2002 MRI C4-C5 posterior osteophytic bar effacing ventral thecal sac, stenosis of neural foramina.C5-C6 posterior disc protrusion effacing VTS. Stenosis of neural foramina.C6-C7 posterior disc herniation effacing VTS.stenosis of neural foramina.C7-T1perineural cysts in both neural foramina.left convex scoliosis mid thoracic spine.wedging of T7. wedging of T5.degen.end plate changes at T8-T9. L4-L5 diffuse disc bulge effacing VTS.hypertrophy of facet joints,central spinal stenosis.L5-S1 posterior disc protrusion with associated tear of annulus fibrosis. hypertrophy of facet joints.S1-S2 Perineural cysts involving S1-S2 nerve roots.[*]So far have tried: meds,physio,acupuncture all to no avail.[/list]

BAXTER 06-17-2003 06:31 AM

Hi Joanne, :wave:

Thanks for reposting this, I hope it helps people understand us better [img][/img] it was as if the words were coming out of my own mouth [img][/img]

I should have posted it here the same day, but it's been so crazy [img][/img] around here lately, I haven't had much time to pop in.

I hope all is well with you [img][/img]

Be Well,
Baxter [img][/img]

Two level laminectomy fusion L5-S1 & L2-3 done on 12/6/02.
I regret the day that I agreed to have this surgery.
Fifteen inch scar from the very top of butt crack (sorry), to the bra line.
BAK cages, rods & screws.(Titanium)
My pelvic bone was used for grafting.
Praying that the other two discs in between, won't have to be fused later, as I was told it was a possibility, due to the other two discs in between, not being in that great of shape.
Doc didn't want to fuse four levels, unless it is really necessary.
I would hate to repeat the surgery, as the recovery period, is so very painful.
I also have a free fragment in my T11-12 area, that I'm still refusing surgery for, at this point in time.
That surgery is way too dangerous for me to consider, until if affects my being able to walk.

cardinal 06-17-2003 07:23 AM

Thank you for posting what we all are trying to say! I wish everyone would read that, not just the ones affected by pain. I love to read this board but I am in so much pain sitting here. I wish there was a way to get in a comfortable position and be able to use the computer. I look great for my age, 47, even got carded this past year a couple times! Because of my outer appearance most people think I am making this up! I have always taken pride in my appearance and am a people pleaser... always say "hi" and smile. I hope I never stop just to make people believe me. I am a survivor been thru so much hell, divorces, jobs, financial trouble, lonlieness, depression and many illneses. I always bounce back. It is so much easier to explain when an illness shows itself... with mine the only visible sign is my 4" scar on my neck. Thanks again for that post! I finally feel someone knows and truly cares! cj

magtize 06-17-2003 09:32 AM

Thanks Joanne
My words exactly if I could have put it into words.
Sent this off to quit a few people in my life with a letter of my own
Thanks again
PS This could also be good for others not just ones in cronic pain

Midge130 06-17-2003 09:55 AM

So very well said! Everybody needs to read that. :D


-Born a premie in 1964-8 wks early
-C-section 1990, 1992, & 1995
-Shoulder pain since 2000
-C4-C5 bone spurs causing central canal stenosis. Annular tear.
-C5-C6 mild narrowing of canal.
-C6-C7 disc bone spur and annular tear.
-C7-T1 bone spur and annular tear.
-No surgery;I'm not bad enough yet! (STUPID)

melanie dawn 06-17-2003 11:05 AM

Hey Joanne,
You've done it again girl, you have found the perfect thing to put up here,of so much sense and benefit. Like the pain scale you posted, it is invauable to those of us with chonic pain.
Thanks girl, where would we be without on this board.
Lov ya Mel

Congenital Cervical Stenosis,complicated by:
Paracentral Disc herniations ,bone spurs C4/5,C5/6,C6/7
loss of lordotic curve
Advanced myelopathy inc. walking difficulty, loss of gag reflex with swallowing problems, neurogenic bladder, occipital neuralgia, spacticity

franjo 06-17-2003 03:11 PM

Joanne and Baxter~

I just wanted to add my thanks too. I kept choking up reading this, because it puts into words all those things I've experienced on a non-verbal level. To 'hear' your own unformed thoughts spoken back to you is so validating.

My husband WILL be reading this TONIGHT!

Again, thanks,


jdog 06-17-2003 07:19 PM

Dog gone it Teri -

Aren't there any single 30-something women on this board?

I'm debating whether or not to send this to my boss, but I'm going to send it to my friends.


DogGroomer 06-17-2003 09:19 PM


Great post! Makes alot of sense. In fact, makes so much sense that I should have brought it with me to my visit with the NS yesterday who looked & treated me like I was nuts & a complete liar.

I'm only 42 years old & was diagnoised with Degenerate Disc Desease. Never had a clue I had it until I had an accident at work in May.

Yep...I'm with you. Took a walk this evening with my son & tomorrow....well...we'll see what happens.

Thanks again for the inspiring & honest post.


Injured @ work on 5/29/03
6/5/03 MRI Cervical Spine Results
C2-3: Disc normal in height. Mild bulging posterior annulus. No central canal stenosis present.
C3-4: Intervertebral disc normal in height. Small posterior osteophyte/disc complex which causes effacement of the ventral surface of the thecal sac but no central canal stenosis. Mild to moderate right & mild left neural foraminal narrowing due to facet arthropathy & uncovertebral osteophytes.
C4-5: Moderate disc space narrowing. There's a posterior osteophyte/disc complex with possible superimposed posterior central/right paracentral disc extrusion which migrates minimally along the posterior aspect of L5. Results in mild acquired central canal stenosis. There's moderate bilateral neural foraminal narrowing due primarily to uncovertebral osteophytes & less so to facet arthropathy.
C5-6: There's moderate to severe discogenic disease. A broad based posterior osteophyte/disc complex causes effacement of the thecal sac resulting in mild acquried central canal stenosis. There's moderately severe bilateral neural foraminal narrowing due primarily to uncovertebral osteophytes.
C6-7: Mild disc space narrowing. There's moderate bilateral neural foraminal narrowing due primarily to unconvertebral osteophytes.
C7-T1: Intervertebral disc is normal in appearance.
6/16/03 MRI Results Lumbar Spine
1. Degenerative Lumbar disc disease L3-4 with a nearly 3mm broad based central disc protrusion mildly effacing the ventral aspect of the thecal sac at this level.
2. Mild annular bulge of the L4-5 disc seen in association with mild facet hypertrophy. Disc extends toward the inferior recesses of the exit foramina bilaterally but without direct neural compression.
L3-4: There's a central 2-3mm disc protrusion mildly effacing the ventral thecal sac & contributing to a mild degree of aquired central stenosis. No significant foraminal encroahment is identified.
L4-5: There's a slight flattening of the posterior disc contour. There's mild hypertrophic change of the facet joints. Slight extension of the disc toward the inferior recesses of the exit foramen but below the level of the exiting nerve roots. There's mild hypertrophy of the facet joints.
L5-S1: No discrete disc protrusion is indentified. No definite central foraminal stenosis noted.

joprud 06-18-2003 12:09 AM

I'm glad you guys liked Baxter's post...Thanks again Baxter...I pop in on the BPB whenever I can to check up on how they're doing...When I first found these boards I started on the BPB and Baxter along with Successtory and Bikerchick were the first to answer...they were very kind supportive and helpful...They will always be in my thoughts as well as a few others I got to know there...I just don't have time to post on both boards but I like to check in and see they're okay...Another great group of people.

I hope this helps some of us help those around us understand a little better what we go through.

Take Care, :wave:

BAXTER 06-18-2003 05:50 PM

Hi Joanne & All, :wave:

I hope this posting finds you all well today :angel:

I'm so glad that this was beneficial to you all, I just wish I had run across it years ago [img][/img]

I do pop in here to check in on you all, what a super group of people you are [img][/img]
I just wish I had time to post on both boards, but lately things are very busy for me [img][/img]

I also posted this on the pain management board, they all loved it as well.

Thank you Joanne, I'm so glad that we were both able to help out in some way [img][/img]

Be Well,
Baxter [img][/img]

Two level laminectomy fusion L5-S1 & L2-3 done on 12/6/02.
I regret the day that I agreed to have this surgery.
Fifteen inch scar from the very top of butt crack (sorry), to the bra line.
BAK cages, rods & screws.(Titanium)
My pelvic bone was used for grafting.
Praying that the other two discs in between, won't have to be fused later, as I was told it was a possibility, due to the other two discs in between, not being in that great of shape.
Doc didn't want to fuse four levels, unless it is really necessary.
I would hate to repeat the surgery, as the recovery period, is so very painful.
I also have a free fragment in my T11-12 area, that I'm still refusing surgery for, at this point in time.
That surgery is way too dangerous for me to consider, until if affects my being able to walk.

[This message has been edited by BAXTER (edited 06-18-2003).]

SORENECKMAN 06-20-2003 06:20 PM

Thanks for saying it all..... People don t seem to understand Hey Life does go on though... Thanks


j_f_2003 06-21-2003 03:33 PM

Well said. Thanks for sharing.

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