do you let your loved ones know?

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Mochiah
Regular Member


Date Joined Dec 2007
Total Posts : 450
   Posted 12/17/2007 1:02 AM (GMT -7)   
First off, I am so glad I found this forum!  I've had chronic back pain for approximately 6 years and decided to go under the knife 2 years ago.  I have the cages, plates, and screws in my back and cadaver bone, plates, and screws in my neck.  I find that at home with my husband and kids I feel alone (I also work from home so there is no "go-to-work" escape).  It is the "what else is new" or "oh, again" comments they make if I say anything about hurting that make me feel so alone.  I've gotten to the point that I don't share information and actually try to hide that I am sitting with a heating pad on.  I get so depressed, which is why I am glad I found you guys/gals who understand all the emotions that come with chronic pain.  I know this isn't a rare circumstance, so I'm just wondering if anyone else has decided to just suffer as quietly as possible?  I decided long ago not to let my chronic pain define who I am, but you know that there are days when that feels impossible.
Mochiah/a.k.a. Sue
cervical fusion 2006, with great result
lumbar fusion 2005, with continued pain 


Chutz
Veteran Member


Date Joined Jan 2005
Total Posts : 9090
   Posted 12/17/2007 9:38 AM (GMT -7)   
Hi Sue,

And welcome to our family! Glad you found us too. Many of us don't share much with family. We either don't want to burden them, don't appreciate their unkind comments, or don't want the condemnation for taking narcotic pain medication. It is so much better if someone in your immediate family, like a hubby, is supportive. Stops the loneliness. But not everyone is so lucky. I have a hubby who's great but I don't tell him every time I hurt. That's all that would come out of my mouth if I did.

Maybe take hubby along on a doc appointment so he understand the amount of your pain. Also keep a pain journal for your doctor and let hubby read it so he understand what you live with.

Depression is very common in CP people. Please do talk to your doctor about this. Don't let the stigma of antidepressants stop you from having a much better life. The medications don't give you a 'high'...they let the real YOU come out is all. There are many to choose from so if one doesn't work well then try something else.

Good luck and please keep in touch,
Chutzie
Co-Mod Fibromyalgia & Chronic Pain Forums
~~~
Fibromyalgia, Ulcerative Colitis, Insulin dependent diabetic, collapsed disk, dermatitis herpetiformus, osteo arthritis in spine and other locations.
***************

The only difference between genius and stupidity is that genius has it's limits. Albert Einstein: (1879-1955)


Mochiah
Regular Member


Date Joined Dec 2007
Total Posts : 450
   Posted 12/17/2007 1:11 PM (GMT -7)   
Thanks for the response Chutzie. I have been taking an antidepressant for many years. I have begun to wonder lately if the dosage is enough since I seem to be afflicted with bad days more often than good ones. It may actually be nice to see my doctor for another reason than the monthly refills! Pretty bad when you start treating doctor visits like a social event.

I do have to say that hubby is very supportive, It's mostly the comments from our boys, and I know they don't really mean anything hurtful by them, I guess it is them pointing out the obvious that gets me down. My husband just gets that wounded look when "marital relations" just aren't gonna happen when he thought they were.

My boys are 18 and 15, and have seen at school that people take narcotics for the high. I know by seeing me that I have taught them that there are the right reasons to take the medication...but every now and again the younger one will ask "dang, mom, how many of them do you get a month?" or once jokingly said something along the lines of me being a "pill popper." I didn't take it jokingly, it's hurtful to me (and I definitely lit into him for it). So, I definitely live with that stigmata.
Mochiah/a.k.a. Sue
cervical fusion 2006, with great result
lumbar fusion 2005, with continued pain 


straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 13473
   Posted 12/17/2007 2:19 PM (GMT -7)   
Hi Sue,
 
I too wanted to welcome you to HW. I am so glad you found us, but hate to hear that you are having the trouble that you are.
 
Oh, I do believe many of us suffer in silence, I sure do. I am tired of hearing it, so I know they are too. Yes, I was confronted a couple of summers ago by my son and was told by my son that I was nothing but an addict according to his Dad. My son was very angry with me when he came to the house that day. He would not talk to me or even look my way. I was on the backporch and he came outside for something. I confronted him about his attitude towards me. I explained the difference between an addict and someone who is dependant on their meds. Before doing so, I made him bring his Dad out on the porch because I was going to say this one time and one time only. I should not have had to defend myself to my family in my book. After that, no more wars about Mom's drugs, but I decided right then & there the less they know the better and I have kept it that way.
 
Of course my husband is one these that its like pulling hens teeth trying to get him to take a tylenol. He is very old school and ignorant when it comes to medicine. You are always suppose to suck it up and keep going. I did that exactly and lasted almost 18 months until I cratered one day.
 
You are wondering if your chill pill is working. Since you have been on it for several years, it may be time to try something else, or like you said see if they can bump the doseage somewhat. I was on 300mg of Effexor for a long time and it just got to where it was not cutting the mustard. So, my dr switched me to  Lexapro and I have very well with it. I am a firm believer that after awhile our bodies do build up a tolerance to meds if we have been on them for quite awhile.
 
I do hope you will hang out with us. We have a really good group of peeps on this board. We learn so much from each other. No 2 cases are alike. Each person has his/her problems. It can be a lonely road thats for sure. Hugs, Susie


Mochiah
Regular Member


Date Joined Dec 2007
Total Posts : 450
   Posted 12/17/2007 2:35 PM (GMT -7)   
See this is EXACTLY why I am glad I found this place!! People understand exactly what I mean even if I don't state it succinctly. I'm am definitely hanging around here for the long haul. I hope that I can contribute half as much as I get back.

I have been a medical transcriptionist for 15 years, so, while I may not be a nurse or doctor, I do understand many disease processes and their treatments. However, it just isn't the same as actually living it. I know that with chronic pain comes the feeling of isolation, depression, and stigmata of narcotics....but until you actually are living it you have NO understanding.
Mochiah/a.k.a. Sue
cervical fusion 2006, with great result
lumbar fusion 2005, with continued pain 


crps
Regular Member


Date Joined Oct 2006
Total Posts : 174
   Posted 12/21/2007 2:38 PM (GMT -7)   

Hi Mochiah and everyone,

I have crps (nerve disorder) and under all day and night chronic pain. I have a very understanding wife and kids. (8and13) I am 42 years old male and always played every sport and rode motorcross all my life. The reason I tell this is because although I thought I was tough as nails my whole life, I find myself crying alone and hiding my pain as much as possible. I complain probably as much as anyone, but like others say, it would be the only thing I say if I talked about my problem all the time. So many nights I just read and listen to others in this forum because you will find that so many people have exactly the same feelings you do. Frustration,anxiety,helplessnes and every other feeling to hate the world. So many days I feel like I dont want to tollerate all these feelings anymore and well, you know what I'm trying to say. To say nobody can understand chronic pain unless they experience it for a lengthly time is so much an understatement. It took a long time before I would admit to crying to my wife but, If we hold it in all the time I think it makes it more difficult to deal with and may result to unwanted decisions. I no longer consider myself an iron man, but just another CP person with the desire for a normal family life and some pain relief.

I apologize for rambling on but to deal with our problems It's sometimes better to vent than to keep it in all the time.

              Good luck to all and a happy holiday season

                                                 mike 

 


PerlaRose
New Member


Date Joined Jun 2007
Total Posts : 16
   Posted 12/28/2007 10:24 AM (GMT -7)   

This is my first post...I have been reading for quite awhile and I have to add that I, too have pain in my lower back and especially in my left leg all the time.  I have been on alot of the meds that have been discussed...right now I am not working and am trying to control my pain with just hydrocodone and amitriptyline.  I also don't say much about this to anyone, even my husband...they act like they don't care anyway.  Pain has changed my life considerably over the last 17 or so years.  I have days that I am SO angry and my husband doesn't get it...he makes it worse and throws it back at me.  I was working a second job (after he QUIT his job) and that was when I got hurt...permanently.  What I wouldn't give to be pain-free!  I had a doctor tell me, too that I will never be without pain...encouraging, isn't it? 

 

 


mrsm123
Veteran Member


Date Joined Dec 2007
Total Posts : 1228
   Posted 12/28/2007 7:08 PM (GMT -7)   
It's hard for our families to really understand what we are going through. My family tends to think that I am invincible, which is partly my fault because I tend to keep going, even when I really should just spend the day in bed.
After my first surgery, my husband became very concerned because I was in tears trying to move, the pain was so intense that I couldn't take a breath at times. He saw it. He was right there with me at doctor's appointments telling them that in all the time we've been married, he never saw me cry from pain and that he knew that if I did, I was in tremendous pain. I had RSD in my right shoulder, arm and hand after a shoulder reconstruction surgery and he was involved in my care for that as well, so he knew what I am normally like when dealing with pain...
My kids on the other hand, think that mom should just drop everything and do whatever it is that they want me to do.....they have gotten better about it, but there are moments when I'm in pain and I just can't do what I would normally. It's been a battle at times but I tried to educate them , and took them with me to doctor's appointments at times so that they could understand a bit better. My PM talked to them and explained things to them as well.
It's frustrating not being able to stand or sit for long, or do household chores that I did for years.....and I have moments of being depressed by the whole situation but it is what it is and now we all have to find a way to live with my new limitations.
Sandi
PLIF/TLIF Fusion w/Instrumentation L4-5 Spondololysthesis L4-5.Laminectomies L4-5, foraminal stenosis L3-4, L4-5, L5-S1, herniations L3-4, L4-5, L5-S1, central canal stenosis L3-4, L4-5 and L5-S1
POST OP CES 3/30-06
Neurogenic Bladder and Bowel, bilateral numbness legs and feet
Revision for failed Back surgery, pseudoarthrosis L4-5, hemilaminectomies L3-4, L4-5, L5-S1, bmp added to revision fusion, replaced two bent screws that were reversing out of vertebrae - August 2, 2007
On going back pain and neuropathic pain, failed back surgery, consult for scs, decided not to do that at this point.
Adhesive Arachnoiditis also......just what I didn't need..


mama2654
Regular Member


Date Joined Dec 2007
Total Posts : 43
   Posted 1/1/2008 9:24 AM (GMT -7)   
Sue, I am the same as you. I work from home 3 days a week, 2 in the office. I have two small kids who need me all the time. My son is in Kindergarten and my daughter is in Preschool. There is never a time to chill out a relax. I feel depressed as well. I actually just came off all my meds for that a few months back. I have been on this since I was about 18 and just felt they didnt work anymore. So far so good, but my anxiety has been high. I have legit reasons for my pain, yet I feel weird going to my dr. about getting meds for my pain. There was a time I think I was abusing the meds only becasue I had to take more then reccomended to get rid of the pain. It was a bad time in my life. My husband doesnt know I am on meds anymore becasue of that, even though I have been following the dr.s directions, well sometimes I have to take 3 oxycodone and not the just 1. 1 doesnt do a thing, how do I explain that to him without sounding like a "druggie".
Anyways I am too thankful for this board. To share my opionions and to have people listen to me vent, when everone else in my life just doesnt get it!
Hugs!

Mochiah
Regular Member


Date Joined Dec 2007
Total Posts : 450
   Posted 1/1/2008 2:53 PM (GMT -7)   
Mama- I don't hide the fact that I take pain medicine from my family, I do downplay my pain around them now because, as I say to them, "It doesn't matter, there isn't anything anyone else can do for me anyway so why bother." I also lock up/hide my medicines because my boys are 18 and 15 and I don't want that temptation there. Years ago, my husband had an addiction (progressed from alcohol, then weed, then to meth in a 1-2 year time), so I know he has an addictive personality, so it is another good reason to lock up medicine. He went through inpatient rehab and has been clean and sober for years, but why tempt someone, plus, I would be the one paying in pain if I were to allow him to get into them.

You said "1 doesn't do a thing, how do I explain that to him withoug sounding like a "druggie." Explain it to who, your husband or your doctor? If it is your doctor, all you can do is be as specific as possible. If it is your husband, try having him go to one of your doctor appointments with you so he hears it directly from the doctor.
Mochiah/a.k.a. Sue
cervical fusion 2006, with great result
L4-5 surgery with cages, plates, and screws in 2005, I have continued pain 
MEDS:  Fentanyl patch, Norco, Celexa, and trazodone
 
Im going to smile like nothing is wrong, act like everything is perfect, and pretend its not hurting me. (quote used with permission from "Tennis").

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