Chronic Pain Support Group

Physicians and professionalsdefine pain as chronic if it lasts longer than three to six months and is persistent. It's distinct from acute pain that is a direct result of injury or trauma. This support group is dedicated to those suffering from chronic pain. Discuss treatments that have worked for you, find advice for your specific experience, and find support. You're not...

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meganK08 10/17/2008

Ok I talked to my second mom today i havent spoken ot her in years. but appearantly my family is talking to me behind my back. All i ever want is support you know all i ever need sometimes is a hug. but they cannot understand that. my dr does not know if my nerves will ever heal or how long i will be on the medication but you know for now that is what i am on the lyrica, lidoderm, phenergan, cymbalta, and oxycodone. the oxy is the one they have problems with because they keep yelling at me and they put me down. they call me an addict behind my back and how they are all scared about me and what will happen. but they all live over a 1000 miles away from me. we call each other. i spoke to my mother in law tonight she has been the one who has been there for me through out all this and she yelled at me and said i was attention seeking. ok my family members asked me what i was taking and how i was doing. and yes i might call my sisters some nights in tears because the pain is so bad. but like i said all i want is support. and it is sad that i have a family who cannot and will not understand that. im very sad and depressed tonight i feel like i am an outcast in my family because of this pain. i hate it and the dr who did this to me. I dont think I can handle going through this by myself. crying and journaling help me get through this but right now i have never felt so alone in my family or with my friends. im scared because they really dont talk to me like im me anymore all they care about is my pain and the pain meds. Then they tell me "we just want the old meagan back" Well i do too but i have some limitations in my life right now an i still am my bubbly self but some days are worse than others. thank you guys for listening i dont know if anyone elses family is like this but mine is messed up. i hate that they talk about me about stuff they dont know. They told me im on "hardcore" meds and i will feel better if i stop all my meds. so not true if i stop the nerve meds i would be curled up in the fetal position screaming. trust me ive tried it. this is just so hard families are supposed to help loved ones not turn there back on them because they think they are addicts. im so sad and lonely going to try to sleep. no sleep from my pain the last few nights my period is making it hard too i get up every 2 hours or hour. im just plain exhausted-night

deleted_user 10/17/2008

im sorry to hear that your family has made you feel so terrible....being told you are attention seeking or inappropriately using your meds is like the a doctor telling you your pain is not real...a real slap in the face. emotional pain only adds to the physical pain...its hard to get your head straight when so much is going on in it--i really do think though that you need to just let your family (with or without a confrontation) think whatever they may...you really cant fix ingnorance and i think its obvious that you have certainly tried. as far as being on 'hardcore' meds--well, let me just say there are things out there far more 'hardcore' than oxycodone...it will be their loss if they cannot ultimately accept that they cannot have the 'old megan back'...at least not right now...you cant just snap your fingers and be free of this monkey on your back...if we could, the world would be a much different place. sadly, having a lack of familial support is all too common when it comes to chronic pain...also here is an old saying i was told growing up--'if someone calls you a son-of-a-bitch you either are or you arent: if you are, than fix it, if you arent then let it go and move on' YOU cannot change a closed minded persons mind...the family sounds as if they have already made an assumption of your life so quit wasting your energy...its sad but true...please dont give into the stress and upset that your family is putting out there...its just not worth it. i wish i could tell you it will get better but some things are just a lost cause. seriously, focus on being a good partner, student, employee, whatever you are doing with YOUR life at the moment and just hope in the future your family sees that you need their support...if you cant get it from them, reach out to us here at DS or if you can, call around to local hospitals or clinics and see if there are any chronic pain support groups-even if you can only make a group meeting occasionally, at least you will get and be able to give support. hope at least some of this helped...just know lots of us have been right where you are--take care, krissy

hmyers512 10/17/2008

I believe you Megan. I've lived it. I had intense pain for 12 years destroy my life. I still have no support - but it's not as important now as it would have been 2 years ago. I found a procedure that relieved my pain after all those years, and i found stopping pain meds easy. thats the difference between addict and real need, the addict just has a psychological craving, your need is real and simply the lesser of two evils if that helps. Pain programs should involve family for leaving us to make these claims they can't and don't understand without any way to prove it - well, I'm just saying - this should be a consideration in chronic pain treatment. It's not and leaves us to suffer this horrible rejection based on misunderstanding. I've dealt with this so long.. i just wanted to post that in support of you. hang in there.

deleted_user 10/17/2008

I am so sorry to hear about your family, But you have to worry about you and not what they are saying. It is hard to do but in the long run it will be better for you, your first priority should be getting better, then after you are better you can try and mend fences with the family.

I don't know why family thinks meds given to you by a doctor is so bad, what if you were diabetic, would they say don't take insulin.
My family is ok with my meds so i cant give lots of advice, and i don't know maybe they do talk behind my back and if they do oh well i cant change their mind, i just don't have the energy to do that.

Maybe you should have a affair so they can talk about something else LOL, no just kidding i think some family's just like the drama it gives them something to talk about.

I would go to the ones that mean the most to you and have a talk with them and if you already did and they are still being negative to you, stop talking to them for awhile and maybe they will get the hint, that you are not going to accept that behavior.

take care,
becky

deleted_user 10/17/2008

i don't know about you, but no matter what i've done my whole life, my family said it was wrong, never supported anything i did, so i stopped looking for their approval, i said hell with it, i figured it out, when the last thing i did, i thought my family would all come back to me, and be like, a family again to me, and they didn;t so maybe you are just the one they are going to seek out to be the punching bag..so what i did is just stopped looking for their approval..and except that i will never get it..i hope that is not true for you, but that is what i had to accept.

Lynr 10/17/2008

Dear Megan,
I hope that you were able to get some sleep. Lack of sleep on top of the the pain and emotional turmoil that you are going through is only making matters worse. HMyers said some very wise things in his post. Pain management clinics/doctors should also provide information for the family members. In your case it probably wouldn't help because they all seem to be a great distance from you? I have lupus in addition to a bad back. My husband and I both are patients at a Pain Management Clinic but I also have a live Lupus support group that is open for myself, family, and friends. I've had both, support and crap, for what I go through on a daily basis. I generally don't talk about my medications to anyone except my husband anymore (he's on the same meds) because those who don't live in the pain that we do are ignorant to these things and it scares them. Most likely it is their fear that is talking. In any event, stop listening to them and get your support elsewhere, maybe there is a neuropathy support group at the hospital near you- call and ask. Krissy is right, it their loss. Some day they will realize that they should have been there for you. God forbid they ever have to deal with the pain that you are dealing with. Honey, you can't buy gas at a grocery store, you are asking these people for something that they can't give and you are just going to have to accept that and let it go. We are here for you. Call your insurance company and the local hospital and ask about the support groups for people who are dealing with chronic pain, neuopathy, etc. Until then,stick with us and we'll help you through this, you aren't alone. xoxoLyn

deleted_user 10/17/2008

i'm sorry to hear that your family doesnt support you.
My family is like that espcially my mum saying i was only in pain to get attention and painkillers.So when i went to the pain scpeaclist i took her along and after that her attitude towards me changed.She helps out and take the kids if i go to the doctors and now is on my back about why cant i sleep and falling asleep is easy.
So when she started this i took her to my doctors appointment and got the doctor to explain it to her.
I dont really lsiten has to say and only have the interest of my family.

lladyfairhair 10/18/2008

Agree with Krissy here- save your energy for the people that CAN support you- and try not to worry about this kind of stuff.

Maybe in the future you can get back to them... but in the mean itme its most important to take care of you- and what YOU need and YOUR feelings. Sometimes it really IS OK to be a little selfish when it comes to takeing care fo yourself. Look at it as a MUST> you must do it for you.
Might be helpful to just look at this as a few different-- all of which I have done myself. Not saying its easy now, okay :)... but it CAN be done.

1)It isnt to likely, that they can "GET IT" because they are not going "thru it" so its almost impossible to get anywhere... kinda reminds me of a dog chasing its tail, round and round. Going in circles and getting NO WHERE. Stupid wasted energy. **Ignorance- not their fault- **Not putting forth the effort to learn and understand IS their fault...you most certainly cant FORCE them to read or use their energy for something positive.

2) Sometimes, it makes people feel superior or better about themselves to think of something/anything to put someone down about...

3)And to remember that even though you miss them now... there may be a very real possibility, that they will encounter something just like what you are dealing with right now, and you wont get the opportunity to reconnect with them as a family until then.

4)It helped me in the past to write a letter to the person- I did this with a very close family member - it helped alot.
Just being able to get everything out... with out being interrupted was really helpful to begin with. It felt great just to mail it, and even if they didnt even read it...at least I felt like it was "ALL OUT THERE."

Im so sorry to hear this is happening to you.
When family members show that much disrespect to people that they are supposed to love-it sometimes makes you question how you feel about them... it can be very confusing.
Makes you wonder WHY ARE THEY DOING THIS??

PLEASE, can you take care of yourself for awhile?

It will all be ok...:)

deleted_user 10/18/2008

Hi Megan,
I know that having those of us who live through the same thing just isn't all you need. I have a family just like yours. the emotional pain I've been through with them sometimes is almost as bad as the physical pain. If I can't put a big smile on my face and be all about how wonderful life is I don't have a place in my family.

It's taken 8 years, but I now realize that I just need to let go. I will never have their approval and concern, so I need to concentrate on me and accept that. Just because they are your family doesn't mean that they can give you what you need.

I find having very little contact with my family helps. I used to talk to my Mom every day , bu the pressure to be all smily got too hard. Without all the phoney interaction I'm much better.
I don't know if this helps, but you have lots of friends here who do understand and WANT to be your support system. Remember that. Lots of hugs!!

deleted_user 10/20/2008

Hi Megan, you got some really good advice here and I hope you understand that we're all here for you. We know what it's like cause we're all living it as well. It's really difficult for family members to understand what pain does to a person, especially if they've never lived with chronic pain. Since your family lives far away from you it may not be possible to have them come with you to the doctor. I've been on a lot stronger medications than you just so I can make it through another day. Only people who've experienced what you're going through can fully understand the extent that pain controls your life. Don't let them get to you. Maybe your family doesn't know how to cope with the new Megan, not being able to do anything to relieve some of that pain for you. We're all here for you anytime you need someone who understands what you're going through. Good luck and hang in there.

deleted_user 10/21/2008

MAn have we all been there. My family never understood and they still dont how hard these diseases are. People dont seem to believe what they cant see. I had to learn to ignore it and depend on myself and myself alone. It's hard to swallow and I've been called an addict more than I can count. In th music biz I had a lot of chances to be an addict which is funny since I never did and now I have to take what I take and they forget nothing like that happened over the last 20 years.You know you're not so hang onto that and a journal is a GREAT thing as well as venting here. Trust me, it's all good and so are you. You've done nothing wrong. People deflect whenever they can so my guess is they want to ignore their issues and you're an easy target all things considered. Just because they are family doesnt mean they are good people. I learned that a long time ago. Try and find some through this site or anywhere else. A lot of hospitals have CP support groups if you're able to check into that. Good luck.

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