HealingWell
Search Close Search
☰

Need some help from those in the know

Support Forums
>
Chronic Pain
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 12/1/2014 2:30 AM (GMT 0)
I know I haven't posted here in quite a few months.  I don't hardly post in the Prostate Cancer forum much anymore.

I am looking for articles, stories, links, etc., that would help explain to the non-believers, that we, who live every day in severe chronic pain, despite our pain meds, can still experience so much pain anytime we are awake.

Got some close family members, that are having doubts (I believe its out of sincere ignorance on the subject), that I could possibly hurt as much as I say, after over 4 1/2 years on pain meds.

I know some of you have been dealing with CP way more years than me, but what you can say or do or prove, to someone that either doesn't understand CP, or can comprehend the life that those with severe CP live?

Could use some help.  Have done some on-line searching on my on, but can't seem to find anything concise or easy enough to share, want this to be something educational preferably, if possible.


Thank you in advance for any help.

David

PS   Nothing much has changed on my end, CP levels still the same, same meds as before, same cancer situation and same radiation damage.  Biggest change, underwent major dental surgery 2 months ago, took about 3 1/2 hours,  all teeth were removed, lots of bone removed, and they did work to the radiation damage in my left cheek.  According to the VA, who did the work, it will be at least 2-3 more months before my gums are healed enough to be fitted for false teeth.  Also, have unexplained weight loss of approx. 100 lbs since the first of this year.  I am 5'8", and down to 128 lbs, and falling. 

Posted 12/1/2014 4:12 AM (GMT 0)
Hello purgatory, pain managements only job is to give you some relief, not completely pain free. Here in floriduh I've been trying to fill my percs for 3 days with no luck. It's sort of like I can just sit and watch tv and have pains in my back and legs. Do a search on what pain management doctors do, they only want to take the edge off period, good luck..
Posted 12/1/2014 4:19 AM (GMT 0)
Family members will rarely get what it is to have chronic pain as it's not something that can be seen, if you could see chronic pain like when a person has a broken foot they are in a cast so you know they have pain but, without any type of medical device people, just are not sympathic to it.
What you could do is when your around them give them all an ice cube to hold and that they cannot let go or drop the ice cube but must hold onto it and once they know what it's like to feel this pain then have them get rid of the ice cube and explain that's how you feel every moment of every day. then they might be more understanding but still might hold it against you.
I really wish family members could get it, if they could just one day walk in my shoes...
Hope this makes sense and you do have my continued prayers, I'm worried about your weight loss and hope you can get seen by a doctor soon...
Many many well wishes...wish I had some better advise for you, you can lean on my shoulder anytime...
Posted 12/1/2014 4:24 AM (GMT 0)
thanks, chart

ice cube is great idea, but I don't think that would be enough, because CP is invisible, ice you can see and touch

will be seeing my oncologist this week, still waiting to see the VA doctor again on the weight loss, they are very difficult to work with, and to get appointments with, endless time on the phone getting no where, even though I am 100% disabled through the VA, as well as SSD.
Posted 12/1/2014 11:57 AM (GMT 0)
I really get that feeling that nobody understands. I spent about three hours convincing my husband that a trip to the ER would yield nothing but frustration for me, and I don't think he even got it in the end but was just tired of arguing with me about it.

I'm so sorry you're going through this, and I really wish there was just SOMETHING we could do to help them understand, but there really isn't. Nobody can just imagine what it's like to NOT remember what it feels like to have no pain. Because I highly doubt there are any of us who do remember what being pain-free feels like.
Posted 12/1/2014 12:35 PM (GMT 0)
Purgatory, web md has a good article on pain and I quote myth opiates will cure your chronic pain..
Posted 12/1/2014 12:36 PM (GMT 0)
Look under living with chronic pain on the web md website.
Posted 12/1/2014 1:43 PM (GMT 0)
thanks, so far
Posted 12/1/2014 8:45 PM (GMT 0)
It doesn't matter how good the article is, until someone has to live with severe chronic pain that limits their ability to function doing basic things like showering, dressing, etc, they have no clue. When you have good days and you can do things you ususally can't do, people say it was because it was something you wanted to do. Many people believe those with chronic pain use it as an excuse for not doing things they don't want to. Even family that you live with very rarely understands what it is like.
Posted Yesterday 1:23 AM (GMT 0)
Hey David...

I often read through the PC forum, as it's closest to the "male version" of Endometriosis, IMO. Don't misunderstand, as I realize that PC can be terminal.  My stage 4 Endometriosis has been "terminal" regarding quality of life.  In addition to the pain and surgeries, the Lupron has annihilated my bones, while doing nothing to slow the disease.  I compare the diseases based on the treatment, which is often castration for men and women.  To add insult to injury, you slay the dragon, only to reveal Medusa.

I SO admire YOU, Purgatory...You are indeed amongst the flames of HELL on earth, as I've read your experiences since I joined HW.

 

I was so sad when I read that your wife had to work, so you spent Thanksgiving alone.  I SO WANTED our table filled with folks who are grateful to be here...anywhere.  I've followed your dental issues, so I'm familiar with your eating difficulties.  I posted a rather lengthy communication to you a while back concerning protein intake by any means necessary.

I truly hope that you get some answers and plateau the weight loss.  You are a HERO to SO MANY.  I weep when I read the PC posts of love and support for one another.  Sure, with most guys...It's always a peeing contest. 

 

smhair  Forgive my ignorance, but are you gathering data for your writing project or just personal use?  I can't imagine you'd need to convince ANYONE that you are in pain. 

HUGS~~Dixie

Posted Yesterday 1:53 AM (GMT 0)
David,

How about a video for the family to watch...
http://www.painmattersfilm.com/
http://www.theacpa.org/video/veteransinpain

See also:
http://www.theacpa.org/videos
http://www.painmed.org/patientcenter/facts_on_pain.aspx
http://www.painmed.org/patientcenter/patient-education/
Posted Yesterday 2:16 AM (GMT 0)
thanks to all answering. checking out suggested links.

thanks, Dixie, for all those kind words, and gathering info for my own personal use, definitely not a writing project- least not this subject.

yes, I have a daughter now, who is convinced that I am not really in constant pain, and has been telling other family members, strongly at that, that there is no way I could be hurting after 4 years plus, and no way I could be hurting so bad being on pain meds, and that I was a coward when I complain or mention the pain. yes, was busy texting that I am a coward. don't think I ever felt so defeated and hurt, especially from my only daughter who was always a daddy's girl. she's 33 btw.

having fought 4 major cancers, having been through major radiation 2x - leaving me very damaged, having been through so many major ops, the recent oral surgery, all that hyperbaric treatment stuff, among other things - most wouldn't say I was cowardly. And gee, I flew on 5 combat missions in Viet-Nam while in the service, and was a fire fighter for 3 year, yep, all marks of a coward.

and yeah, when she was a little girl, perhaps 4, she was with me, when I jumped into an icy river during the snow melt in NH, to save the life of a careless teen aged boy that fell into the rapids, but yeah, I must be a coward.

sorry, vent over. very disappointed with her, not sure things will or can ever be the same. oh, and she's telling everyone that I am a drug abuser, though I have never ever, even taken a single extra pill, that I wasn't legally dosed to take, not even when I am going through the worse of days.

you might expect this from a stranger, but from my own daughter?
Posted Yesterday 5:55 AM (GMT 0)
David...There's truly no excuse for your daughter's cruelty.  Has she completely lost her mind?  I would blame "youth and ignorance", but @ 33, she should be a reasonably intelligent woman.  Perhaps she's in complete denial of the seriousness of PC and the harsh treatments to try to save your life.  Then there's the very real possibility, in view of her harassment, that she lacks the EMPATHY GENE entirely.  My mercy...How can a daughter say such things to her father, who has lost 100 lbs., had all teeth removed, endured HB treatments for radiation damage...and is actively engaged in the fight of his life, suffering from the pain of surgically impaired private parts.

I remember you had problems with jacking your car before a planned trip to family Thanksgiving.  You had to cancel, right?  Were you expected at this daughter's home?  Perhaps she just went bat poop crazy and lashed out, thinking you were using your illness as an excuse to "not" make the trip.

Nevertheless, one cannot un-ring a bell, or un-speak words that are daggers in the soul.  I'm so sorry.  I can't explain her thought process.  If I had my dad back, and he were suffering like you...I would be THERE WITH HIM...loving him through his pain and suffering, as I offered moral support for my mom.  I would also be fighting like a TIGER to get you the help you need.  Y'all would not be going through this without me (boots on the ground) as your daughter.  But I'm pushy, that way=)

Hey, if she INSISTS on proof, whip out that blue body suit w/ long red cape...We all know you are SUPERMAN!  You are NO coward, David.  Don't let that idiotic verbal spew get into your head...PLEASE!!

 

Rant all you want...You've earned it.  I don't know the specifics of your pain, but my pelvic/vaginal/rectal cannot be explained without explicit language.  I cramp horribly almost constantly, as I feel that residual endo/adhesions have yet again "webbed" my abdominal organs together AGAIN.  I feel my belly distend as though filled with an air compressor.  I can't have a BM or pee when the inflammation is at it's worst.  My vaginal cuff was damaged during LAVH (botched twice).  I live with constant severe pain in my vagina/rectum.  It feels as though I am being violated (raped) with a serrated edge knife twisting/scraping inside both canals.  Yes, if you're wincing and crossing your legs...YOU GET THE PICTURE!!!

I've told you that you're a phenomenal human being in the face of adversity.  I'll tell you often, if you are doubting yourself.  DON'T.

HUGS~~Dixie

Posted Yesterday 9:25 AM (GMT 0)
David,
If it is one thing I have learned it is that no one can truly appreciate your situation until they have lived it in some form. I have severe RLS and my wife was angry at me for a long time because I couldn't stay in bed and would toss and turn keeping her up at night. Now she is dealing with severe chronic pain with her back and I think she understands now. She is on pain meds, which only helps mildly and complains constantly of the pain. But nothing to the level of what you have been going through.

Your daughter sounds like my wife's mother. Her mother is more concerned about her getting hooked on pain meds. She thinks there are other solutions, although my wife has done everything possible short of having surgery. She honestly thinks my wife is a "druggie". I wish I had an answer to your daughter's behavior. It is so hard to understand how a family member can be so cruel and yet similar things have happened in my family as well. Maybe it is an emotion coping mechanism to hide what they really think and feel but no matter what it is, it has hurt you immensely and it were me I would feel the same. People can be so mean spirited and even if they later apologize it is difficult for it to ever be the same. My sister and I are estranged because of some things she said and did following the death of our mother. Our relationship will never be the same. It is so sad that people can't stop and think about what they are saying or doing before irreparable harm is done. With all that you have been going through, I truly hope things can be repaired between you and your daughter.
Jim
Posted Yesterday 9:41 AM (GMT 0)
I stopped long ago trying to convince anyone else I was in pain or to what extent. I was wasting precious breath!! Pain is like parenting in the way you can't imagine or know what it's like until you experience it you can't imagine it and there's a few but not many ppl I would wish that on.
Posted Yesterday 3:13 PM (GMT 0)
Well said, Vickie.

No way for any one outside living the CP life, could ever truly comprehend constant unending pain, even if it does last without reprieve for months and/or years. And that for many of us, perhaps most, the pain meds only make life somewhat bearable, but certainly for most, it does not eliminate all the pain, not even for a day.
-------

Thanks Jim and Dixie. Yes, she was upset that I wasn't able to come, but no excuse for what was said. Plus, we were unable to get out dog boarded in time, and had no where to leave dog, and couldn't take it or have it on the other end. So it was either that we both didn't go, or just my wife would go.

Due to the holiday traffic, the normal 3 1/2 trip (which is way too much for me on a normal day) turned into 4 1/2 hours getting there, and almost 6 hours coming back. With my back hurting so bad to begin with, never could have endured 10 1/2 hours of total car time, would have been utterly miserable.

My daughter is known to never apologize, no matter what, so I am not expecting anything. I am being told to "get over it", and the famous, "just suck it up". If one more person tells me that......aggghhh!
Posted Yesterday 7:40 PM (GMT 0)
Purgatory you speak for more people than you think.. Great wording !!
Posted Today 1:10 AM (GMT 0)
thank you. I learned a lot from a lot of the regular CP folks here when I use to be here more frequent, at least it makes you know that you are not alone, or wrong about your feelings.

Just like CP, and other ailments, are in the "invisible" class. So those on the outside, see nothing "wrong" with you, so assume its either not serious, or perhaps not even real.

A lot like my cancer. It's currently Stage III, and will be Stage IV as soon as any of the many micro-mets believe to be in my body are large enough to be picked up on scan. Yet, seen or not seen, the cancer is in my body, its no longer curable. My curable hope went out the door when the original surgery failed quickly, and then later, the radiation which went so terribly wrong, was my final curative hope, failed just as fast. The cancer is there, busy having a good time.

In my case the CP and CF is a direct result of treating the cancer, and with all the doctors I have seen, the only thing they will agree upon, is that the damage is permament in nature, and thus far, there has been zero improvement over the years.

With all my unplanned and unexpected weight loss, I thought perhaps that would help in the pain department, but now that much of my body is skin and bones, I no longer have that nice insulation the fat use to provide around my joints, so in some ways, certain parts of my body actually hurt worse from being so much lighter. Quite the opposite from what I would have guessed.

However, at age 62, in my heart of heart, I don't feel I have to prove myself or anything about my conditions to anyone, family-friend-or even foe. As I tell people, I do the very best I can each day, there's nothing more I can do than that, and despite it all, I haven't given up hope. I know in the next world for me, I won't have to suffer in the flesh anymore, so when its my time, it will be ok with me.

Meanwhile, I will continue, to keep on keeping on, and try to enjoy what I can out of life, while working through and around the limitations these ailments have caused me.

David

Appreciate the help and kindness, I know I am preaching to the choir here, and that helps. We are birds of a feather when it concerns living with CP.
Posted Today 2:56 AM (GMT 0)
I think many times when it comes to our adult children they feel we are immortal and denying the signs of aging and bad health can make it not so. My kids are always saying something like "Mom why do you have that heating pad on " or why are you limping like that? They're aware of every single surgery, every diagnosis I have ever been given yet feel the need to ask ridiculous questions?

I came in tonight from my neighbors and my 25 yr old son and his 19 yr old girlfriend were here and she was visibly upset so I asked what was up. My son says "Oh her grandmothers really old and sick and has a infection in her leg they haven't been able to clear up so they're talking about removing the leg and she has Copd and a bunch of other stuff old people get so they're worried about her "" I said I'm sorry to hear that how old is she? Oh she's old Mom 64. Bahaha!! I'm 62 and have copd as well and they questioned me using a heating pad!!!

I just smiled and turned the heating pad down so I didn't risk a burn getting infected!!
Posted 12/4/2014 7:51 AM (GMT 0)
David

Oh David I wish I could say your daughter's words surprise me. How awful ! And I am so sorry.

Something I've read about - here- numerous times.. I agrree with what other folks have written.

Since my injuries/ onset of chronic pain I have sent links to articles, requested each member to go to just One dr appoitment, encouraged them to ask questions, etc. (It appeared to. Be an imposition, not an opportunity so i never asked again). Did not make a bit of difference.. am still being told 'shake it off' / 'man up'.
In short, I no longer believe providing information is the answer : the person's attitude is - & they have to want to believe.

You remain in my Prayers David. You are indeed blessed to have your loving wife.
Posted 12/5/2014 12:45 AM (GMT 0)
I'm so very sorry for your daughter, seems like she has a lot of anger and that its directed more at your pc than you. I bet she's also afraid and people do and say things they don't mean when they are angry and afraid.

Sometimes those closest to us hurt us the most. I'm sorry your going thruogh this with your daughter...

Many prayer...
Posted 12/5/2014 1:00 AM (GMT 0)
All 3 of my brothers have hurt me that we rarely talk, even on the phone. I just can't have a descent conversation with them without me crying ... I hope your daughter gets it soon... The last time I went home was in 2009 late October and I had pneumonia going into 2010... They don 't understand how badly cold weather hurts me..I so wish they knew, just last night my husband had cold hands and he kinda understands now that it hurts me except I have that everyday...
If only pain could be seen...
Posted 12/10/2014 12:36 AM (GMT 0)
Hello - I haven't been on here much because this year has just been terrible for me, health wise. I am just doing some catch up reading now, and wanted to say that I can totally feel your pain in what your daughter said to you. If it hasn't already, I hope the shame of it dawns on her soon and that she will make restitution to become a positive influence in your life.

I am not as much of a hero as what you've described, but I have always been very strong and very active prior to almost five years ago when my CP got so bad. No need for lengthy details, but my daughter did the same thing to me in September.

I have always been there for her, and am still the one that both my young adult kids come to when they are sad or need advice. We've had a pretty close relationship, but for some reason she decided that I was taking too many drugs and that they were making me "sick" and that if I would stop taking pills and just walk back and forth in front of my house a few times every day for exercise then I would get better. She told me that she "researched" my conditions (TMJ, Fibro, Spinal Stenosis, bulging discs, MPS, osteoarthrities, CFS, sciatica...) and insisted they were caused by me being lazy and taking pills.

She does live two states away from me, so I know that she does NOT know what is really going on, and I don't try to make a big deal of it. She said many other things, including that I should feel like crap for doing this (MY pain) to her and making her life harder!

Anyway, we had something of a screaming match, because I was so hurt by what she was saying. I'm not in the habit of hurling names, and was really shocked at the rage I felt when she was attacking me. I ended up telling her that she was just a pissant little 23 year old who didn't really know anything, and that I wouldn't talk to her again until she apologized. Since then we just text, though that is friendly enough. We used to talk for a couple hours throughout each week. I just told my DH to keep in touch with her more routinely to take my place, and I am mostly at peace with taking myself out of her firing range.

While I am maintaining distance for my own good - I think that a lot of where this type of behavior comes from in our loved ones is a place of fear. They don't understand what we go through, and in the case of my daughter (maybe yours too!) - they can't ask/demand the same things of us anymore. Prior to CP becoming so bad, I could handle to stress of dealing with her dramas, trying to help her solve problems or do her taxes, or research things for her, etc. So suddenly they have to see us differently and adjust their expectations, and deal with the uncertainty of whatever the ailments are, and it's just too overwhelming for some people!
✚ New Topic ✚ Reply