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Old 12-10-2006, 08:58 AM   #1
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I am SO sick of the "stigma"

I have had so many insensitive and ignorant remarks about my pain and mostly about the meds I take. "You take that? Oh...do you REALLY need all that medication? That's not good for you? and of course.."You will get addicted".......I know I shouldn't let it bother me but I am not thrilled with being physically dependent on narcotics...it has been the only way I can function. I am on about 90 mgs. oxycodone a day, and from what I read, folks are on a lot more than me. Between failed spinal fusion surgery, another herniated disk and neuropathy in my legs and feet....Geez!!!! Even the nurse at the hospital clinic said the dumbest thing to me...."I don't think the Dr. wants you on this every day........HELLO! I have been on daily pain meds for 6 months. I guess she never heard of withdrawal. Even if I didn't need it anymore, you just can't stop it. Thanks for letting me vent. Unless you suffer chronic pain...you really don't get it. And to suggest I exercise or try other methods...of course I have. I can barely walk some days and she suggested an aerobics class. LOL. Sharonn

 
Old 12-10-2006, 10:18 AM   #2
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Re: I am SO sick of the "stigma"

Hi Sharonn...... I hade a ER nurse say about the same thing to me then turn around and give me a shot of morhine..... go figure [ lol ] . I'm not on any pain meds now and if I were it is nobody's business. So don't let what others may say bother you if you need them, take them I know what pain feels like. Dee
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Old 12-10-2006, 10:37 AM   #3
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Re: I am SO sick of the "stigma"

Sharonn-
Oh, there are so many of us here who know exactly how you are feeling. I actually found out that some of my family members had been discussing this issue about my pain management behind my back. Some of the things that were being said really hurt me to the core because I had no idea they were even entertaining those kinds of thoughts about me. I also thought that surely they would come to me and ask questions if they had any.

At that time, I made a really poor choice of quitting pain management because I was so hurt by what was being thought of and said about me. That was well over a year ago, and recently, I discussed it with my husband and kids and then my doctor and she has referred me back to pain management. I saw a couple of PM doctors that just were not right for me and have now found a wonderful new PM doctor that I adore. He is great, and he explained to me what to say to people who make those comments. He said to tell them this:

When you have a headache, you take a Motrin, Tyloenol, etc. If you fell and broke a bone, you would go to the ER and they would put you on pain meds. Certainly you wouldn't not take the pain meds. Well, I have chronic, long term pain and I am being treated for it.

When I re-entered pain management, I told my family members, and also told them that if they have any questions to please talk to me about it before they form any kind of opinions that just are not accurate. I will never again give up pain management just because of what others think or say. Like you said, anyone who doesn't have long term, chronic pain will never understand what we go through. Some of the pain we deal with on a daily basis would have other people crawling the walls.

It's ok that you vented. We are here to support each other, and listening to a "vent" session is a part of that support. You have to take care of you- regardless of what other people think or say.

Last edited by ozzybug; 12-10-2006 at 10:41 AM.

 
Old 12-10-2006, 11:33 AM   #4
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Re: I am SO sick of the "stigma"

THANK YOU!!!!!!!!!! I feel the same way and also suffer chronic pain along with a long list of health problems. I just spent 1 month in the hospital. I had to have most of my stomach removed due to ulcers and now have a feeding tube. I have to infuse Peptamen through it every night. I am now on methadone and came home on dilaudid to deal with the abdominal pain the feeding tube creates. I have alot of questions on how the 2 meds will mix. I was taking them in the hospital and doing okay. I have been home for 3 days now and feel awful. I have no energy. I also found out while in there that my thyroid is bad. They called it hypothyroid and had me taking synthroid. I am not taking it now though. I am only on the methadone (75mg every 8 hours) and dilaudid (12mg every 3 hours as needed). Is taking both of these meds together possibly making me feel like that? I feel stupid and I know I need to learn more about hypothyroid. But after all is said and done, I also get real tired of doctors and nurses asking why I need the pain meds and make all the alternative suggestions. It sounds like all this just started, but I have been dealing with feeding tube and all the other issues for about 5 years now. That is why I feel so stupid in not knowing more than I do now. Thanks for listening. Lynn

 
Old 12-10-2006, 11:39 AM   #5
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Re: I am SO sick of the "stigma"

Sorry you have to go through all that....do what you need to do for yourself...God bless you...you've been through a lot. Thank you all for responding..Sharonn

 
Old 12-10-2006, 08:41 PM   #6
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Re: I am SO sick of the "stigma"

Amen and Amen!!

There are so many stupid, stupid people in the medical establishment that should know better concerning pain management.

I, personally, have posted many times on what I call my personal "soapbox." This subject, of course, is the difference between 'dependence' and 'addiction'.

Seriously, I want to beat people who use those terms interchangeably. Dependence is what we all develop by using opiates on a long-term basis. It is just part of the beast. Addiction is the term used when a person drug-seeks, misuses pain medicine, and/or compulsively obtains these drugs for euphoric reasons. And, when I say "euphoria", I am referring to getting high.

I think we all experience euphoria in the sense that we finally obtain relief.

As one of the others said, it's no one else's business. I don't even discuss my pain medicine with anyone else but you all--especially after a family member decided to help himself to my opiates. Even though I have forgiven him, I still hide this medication--generic Duragesic (Sandoz), generic Actiq (Barr), and generic Dilaudid (Watson). In fact, I don't like people knowing that I have this stuff because it, apparently, has a VERY HIGH street value. (I don't typically brag repetitively, but I have to express my thrill over the recent availability of generic Actiq. My co-pay went from approximately $950.00 down to $10.00. Yes, you read that correctly. What ticks me off retroactively is that the box is practically identical and made by the same company. It just no longer says "Actiq" on it. Now it says "Oral Transmucosal Fentanyl Citrate [OTFC]".)

In order to try to stay on topic, I'll end by saying that I'm sick of the stigma, too!

Jon (Conductor)

 
Old 12-11-2006, 04:55 AM   #7
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Re: I am SO sick of the "stigma"

Hi Lynn, The biggest symptom of hypothyrodism is fatigue. If not for the incrediable fatigue people would never go to the doc. One of my friends was coming home and falling asleep by 6:30 every night and was down for the night. This went on for several weeks and his wife new this wasn't normal for the 35 year old man she had known for a decade. It was the only symptom he experienced and if hadn't continued for weeks he never would have sought medical attn. Extreme fatigue is the major symptom of hypothyroidism.
Good luck , Dave

 
Old 12-11-2006, 04:50 PM   #8
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Re: I am SO sick of the "stigma"

Well said Conductor....... My beliefs also..... Dee
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Last edited by Deeraysmom; 12-11-2006 at 04:52 PM.

 
Old 12-13-2006, 11:36 PM   #9
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Re: I am SO sick of the "stigma"

I know what you all mean. I was just about to start a new thread about this when i saw this one. Like some of the other post I found out that my husbands family had been talking about it behind my back. And If thats not bad enough I have to deal with my mother-in-law who almost everytime I see finds a way to ask me when I am going to go to rehab. She will even tell others that I am on way to many meds and I am addicted to them and need rehab. My husband also walked in on her and his grandfather discussing a medical report from my psychologist had sent to me. She opened it and found not only the need to read it but to discuss it with others. When my husband walked in and asked why they were talking about me, she said well have you seen this? Of course he had't because it was in the mail that day. She said well you need to read it. This was a report from my psych eval for disability. So I had pretty much told him my life story. I told him things that I had never told anyone. Not even my husband. I was so betrayed.

So I had to switch PM and found a wonderful man who is willing to listen and try to help. So, the first thing my MIL says the next time I see her was "well what did they say" I said they just changed my meds around stopped some and started some new ones. and again she was like oh well did he talk about sending you to rehab yet? I even tried explaining to him what the PM told me about addiction vs. dependence, and what happens when someone is living with chronic pain. I am just sick of this. I HURT and I HURT EVERYDAY who are people to judge what we do in our personal lives. Even the pharmacys judge us.

I would never wish this pain on anyone but I wonder what they would do if they had to live in our shoes for just one day, or even an hour. Would it changed their minds, would they take the meds. ect. ect.

Sorry I got long winded about this, I have had this bottled up for a while so it was nice to hear that others have similar problems.

Hope everyone has had a good day.
Jenn

 
Old 12-14-2006, 05:42 AM   #10
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Re: I am SO sick of the "stigma"

Believe me...I understand. I am actually trying to taper down(very slowly) and it is difficult. I have weird nightmares every time I lower the dose.S

 
Old 12-14-2006, 11:35 AM   #11
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Re: I am SO sick of the "stigma"

Ya know , the crazy thing is, we spend so much energy trying to put on a happy face and not let the world see what we experience behind closed doors. This just makes people feel the meds are even less needed.

I guess people would understand beter if we propped up a sick bed in the middle of the living room and only allowed 15 minute vists between 7 and 9 pm.

The ability to smile through thanksgiving dinner or a trip to a friends doesn't allow them to see what life is really like.

The funny thing is, they really don't want to see it. I was fed up last year after 4 hours at my MIL and told my wife we had to go. She understood but her sister was in town so she invited her to our place. I had always felt I had a decent friensdship with my sister in law, so when we got home I layed on the floor, she watched me have a few spasms. I paced around from chair to sofa to computer, not able to get comfortable and she asked me what was wrong.

I told her this is what my life is like every hour of every day. I can fake it/ hide it, for a while so I'm not the center of attn and my problems aren't the center of atttn at a dinner parrty or a visit. But this is my life behind closed doors.

She actually said she couldn't live that way. If her husband was injured she didn't think she could stay with someone that lived like that either. Her husband is in IRAQ and I just thought, how completely shallow. You would leave you husband if he was injured and came home without a limb or disabled? As faras living that way herself, it's not something you choose, it just is.

Basically if her lifestyle was effected and they couldn't just run to the beach and hop on a jet ski or drive 4 hours to the mountains to go camping and rock climbing, she would have to move on, or what, kill herself ? I lost most respect I had for her that day. I know there is no way you can take someone like that and make them appreciate the ability to walk and do their own grocery shopping or work 6 hours without sweat dripping from your nose from standing too long. I've given up on educating people, I want to let loose and say if you haven't figured it out, what you see is not always what you get.

The harder I try to hide disabilities, the more people expect and the less they understand. I've had several huge blowouts with my friend that gave me the part time job. He wants to keep adding hours and adding hours because I'm good at what I do and I can fake it for a while. I can get through an 8 hour shift but I pay for it for 2 days. It's gotten to the point where it just isn't worth it. The more I do, the more he wants.

Sound familiar?

He probably thinks he's doing me a favor by scheduling me more. I can see this isn't going to last long. I told him today if you need a 40 hour person than you need to hire one. I didn't sign on for what he's asking and He knew this from the get-go.I was to fill in on saturdays and one day a week to give 2 different managers the abilty to take a saturday off or a weekday off and still be covered. I think he figured if I just got moving that would solve all my problems and I would somehow get used to being on my feeet 40 hours with a failed fusion and bucket of broken hardware in my back.

I'm still in the work trial period so it's not effecting SSD, but that comes to an end in may, then I have to choose to stay below the amount allowed or give up SSD and go full time. I know going full time is just taking a step closer to surgery where I will do anything to relieve pain that just can't be relieved by meds. If that failed I would have to start the aplication process over and likely spend another 2 years without any income or insurance because of my age.

Thanks for allowing my rant.
Take care, Dave

Last edited by Shoreline; 12-14-2006 at 11:52 AM.

 
Old 12-14-2006, 02:33 PM   #12
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Re: I am SO sick of the "stigma"

Rant anytime you want Dave that's why we're here.... Right ? For support.....Hope it helped, it does for me when I get it out..... Dee
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Old 12-14-2006, 05:51 PM   #13
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Re: I am SO sick of the "stigma"

Quote:
Originally Posted by sharonn
I have had so many insensitive and ignorant remarks about my pain and mostly about the meds I take. "You take that? Oh...do you REALLY need all that medication? That's not good for you? and of course.."You will get addicted".......I know I shouldn't let it bother me but I am not thrilled with being physically dependent on narcotics...it has been the only way I can function. I am on about 90 mgs. oxycodone a day, and from what I read, folks are on a lot more than me. Between failed spinal fusion surgery, another herniated disk and neuropathy in my legs and feet....Geez!!!! Even the nurse at the hospital clinic said the dumbest thing to me...."I don't think the Dr. wants you on this every day........HELLO! I have been on daily pain meds for 6 months. I guess she never heard of withdrawal. Even if I didn't need it anymore, you just can't stop it. Thanks for letting me vent. Unless you suffer chronic pain...you really don't get it. And to suggest I exercise or try other methods...of course I have. I can barely walk some days and she suggested an aerobics class. LOL. Sharonn


i know exactly how you feel sharron and everybody else its simply just ignorance run amuk. nobody except you and people with the same pain as you is ever going to understand what you go through. they can only comprehend the pain that they experience and if they havent experienced it they dont think it exists. i learned over time that if other people have a problem with youre problems well just say tough deal with it because its none of their business anyway. like you said unless you suffer chronic pain you just dont get it. but hang in there sharron and just do what you need to do to live a comfortable life and forget everybody else ,because believe me nobody is stopping them from living a cofortable life they just want to be nosey.

 
Old 12-14-2006, 07:04 PM   #14
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Re: I am SO sick of the "stigma"

I have been posting on the "addiction" board about my situation. Having had a failed cervical spinal fusion surgery 2 years ago, I live in a state of very bad chronic neck and thoracic pain. I take hydrocodone and darvocet as well as soma on a daily basis. I am always getting "looks" from my boss at work who has told others I have a "pharmacy and pop pills all day". I find myself sneaking into the office behind a closed door to take my medication unseen so that I don't have to deal with the comments.
I know that I am addicted (dependent??) to the medication after two years of taking opiates. My body has definitely built up a tolerance which, in recent months is resulting in me waking in the middle of the night with breakthru withdrawl symptoms when it has been more than 8 hours since the last dose. This has me scared and convinced that I am an addict.
I DO have legitimate pain management issues. The triple cervical spinal fusion surgery did not resolve the pain/ electric shock/ numbness symptoms I was dealing with that made me go to the doctor in the first place.
Now I am in the middle of having spinal epidural injections and just completed a radiofrequency procedure to 7 vertebrae in my cervical and upper thoracic area. All of this has failed to produce the results of pain relief I have desperately strived for.
Which is why I continue to take the pain meds. My family makes comments about me "needing" to take drugs all day long to function (insinuating I am an addict).
It is a very demeaning and embarassing situation. I am especially stressed out when I go to the pharmacy to pick up the prescriptions. I have this idea that the pharmacist is convinced I am an addict looking for a fix, since I get 3-4 scripts per month (all legit and by just one doctor). I just feel so guilty like I am doing something wrong picking up these pills. Does anyone else experience this??

Sorry for rambling on...I am just looking for answers..

Lou

 
Old 12-14-2006, 09:11 PM   #15
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Re: I am SO sick of the "stigma"

We had a disscussion here long while back about telling not telling and disscussing very little with those outside the household we live in. For all kinds of reasons. But to fight for correct care to get to the point when we get care to the guilts and all that entails.
I got so frustrated with one of my favorite tv shows House doing an ongoing story arch about house being in pain doing adictive then doing all kinds of crap and soon to be trial in jan.
I think fox is doing a mega dis service to all of us seriously.
While clearly it is just a tv show the fact is the proper course would of him being sent to a pain managment speciliast and allow the pain management specialist to take over his case.
Fox did not do their homework and it hurts all of us.
While clearly it is entertainment purposes only it continues to add to the stigma of functioning through serious pain issues not being treated properly and how it affects everyone..
So not just family members, the media addicts and reporters do a dis service by not reporting the other side of the story.
Then when folks find out about normal folks on morphine and anti despresants they go nuts, all because of lack of information.
As we are faced with up coming holidays and the old folks are talking bout who had what surgeries who takes what
just smile nod be conserned but not divulge anything about where you are at currently.
Trying to explain the ins and outs of this that isnt your doc is just not worth the effort or time
much luck to all of us in the on goings of this and i hope we all have some level of relief and peace over the holidays

 
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