Wednesday, February 15, 2012

would like to chat with people with chrionic back pain

Hello to all Iam a new user and look forward to getting to know this site as it seems it can be very helpful I really have no clue how to use it as of yet if anyone can help please let me know also Iam looking to chat with people that are disabled as for me I live alone and dont have anyone that understands thank you wish all the best God Bless You today and Always angel07

5/20/08 1:24am

Hello Angel

It's really nice to meet you and Welcome to the Chronic Pain Connection!

We are all really happy that you've found us and I hope that you feel comfortable to join in any where you'd like or find interesting.

We have the sharepost section here and we also have a regular forum group that you can locate by clicking on the blue button above and then click on the Chronic Pain Forums line and it will take you over there too.  If you decide to post in the forums you have to just resign up on that section too, most of us use the same user & pass words for both sections to make it a bit more simple & make it easy for those of us who post in both area's to recognize you on both sides.  But your welcome to do what ever works best for you.

I'd like to invite you to our daily grind support group in the forum area, you can locate it by clicking on this link and read some of our ongoing daily conversations to see if it's something your interested in.  http://forums.healthcentral.com/discussion/chronic-pain/forums?a=tpc&s=1611041&f=1361017&m=26510772&r=21210582#21210582

We are all disabled in the group so far and we drop in as many times a day or week as anyone wants.  It's not a section for any heavy topics like politics, but we each share our daily struggles, successes and loneliness with one another and it's a very nice group, small but we have occaisional new comers that drop in and we welcome everyone and all who are interested.  Your welcome to read through our conversations and see if you'd like to join and we would be pleased to welcome you in our little forum family/ group, so your welcome if or when you'd like.

If you have any questions on how to navigate the site or are looking for any additional information, you welcome to send me a private message by clicking on my name by my picture and it will take you to my home page and you'll see the link to send me a private message too.  So let me know if you have any questions or concerns.

Welcome & Take Care

Gentle Hugs

Betty

5/20/08 10:21am

Hello to you and Thank You so much! Iam very happy to be here and blessed, Iam really not sure how to go about this site as I said hopefully I will learn as it seems so comforting already! its nice to know you are not alone all though I know Iam not .I just dont get out to meet people homebound, so it makes things a little tuffer. May I say that was so kind of you for stopping in. looking forward to getting to know you and all.well I sure hope you have a great day as Iam a little nervous OK alot- have a doctors appointment shortly pain pump talk about it .it was eighter that or rods and swerws so i will see about this frist. its been a very long road for me .......... sure hope we can stay in touch as I do need the support No I dont have any family and live by myself I dont focose .on the pain but when its there 247 how can you not ? it is and is very frustring as I lost alot over the yrs But I have my Faith thats what keeps me going God bless please let me know if you get this. and . I really look forward to join you all and appreciate your help so thank you again as for the links I dont know how to use them it seems when I click on them nothing happens so Iam not good with that 1 yet If you give me it I can type it in then should be ready to go THANKS A BUNCHSurprised

5/20/08 9:06pm

Hello Again Angel Dear!

I was really tickled to find you had replied so quickly to me.  You must be figuring some of the site out, as you've been talking with us.Smile

It's almost time for my evening prayers, but I thought I'd get a note back to you and see if your around.

How did your apt go?  I hope you were able to get all your questions & concerns discussed, so you can make a well informed decision as to what is best for you & your pain.

We also have an ongoing discussion over in the forum area on "Pain Pumps" where many others with the pumps or considering them are talking about their own experiences & sharing with one another.  The gentleman (Bob) who runs that discussion is quite knowledgeable about the pumps and has one himself, so he has been a wonderful benefit for many.

I am nearly homebound myself and have a difficult time riding or driving, but I try and force myself, even though the drive to town will ramp pain up rediculously and sometimes I either feel like racing back home or I do race back home.  So your now alone in that respect either hon.  I don't really have any friends in real life anymore, just my elderly friend and the home ministry lady who comes from my parish each Sunday afternoon.  Nearly all of my best friends are right here online and I've really been blessed with meeting some wonderful people here & a couple other pain sites. 

I've found it so much easier to visit with other pain patients, as they understand what this is like and your able to talk and relate much better with their pain conditions too.

I'm very thankful that you have your faith, as I rely on mine very much to get myself through each day.  Do you belong to a church & do they have a homebound ministry?  Ours is really nice and I wish all that would like one to have someone come to pray with you and bring communion or read scripture with you.  I am very grateful for my lady friend and look so forward to her weekly visits.

I better not jabber at you too much and interfere with your checking out the whole site.  Just remember I'm here and you can contact me any time you want or have any questions. 

I don't know why the link did not work for you, but I'm wondering if your security software is set a tad too high and that's why the page won't open?  Just a thought, but I'll try and send you some other links to your private message box and that way you'll see how that works too.  Otherwise, you can click on the Blue connect button at the top of the page and a drop down box comes down and you can click on the Pain forum line and it will take you over there to look around first and see if you are interested in that area.

Well, Take Care of yourself and I'll talk to you after bit.

Gentle Hugs hon

Betty

5/20/08 8:41am

Hi! Angel07

 

I am intrested in hearing your words about the path you have been on in this journey with chronic pain. I have know this age old friend for 30 years now and am here for you when you need to share.  I hope in time you will share a bit more when you are comfortable about it.  It is always the most important first step in bein honest to yourself about the hurt you feel and how not to bottle it up inside and I belive this Forum is a great help for those to know they are not alone and never were. 

Growin up Physically challanged since childhood  I fought a good fight and only unitl 1995 did I give into disability assistance, but not the physical aspect of it. Everyday I fought to make a new ability of what I truly am capable of and know everyone has a God given talent and this alone sometimes can be the best medicine to help cope with chronic suffering. Even if it just gives you a moment in the day to escape from the pain.  Many walk around wearing a mask hiding the hurt and it is easy to learn to have a concreate smile as I once did, but a support group is integral to the healing process.  I hope you have a support system to reach out to outside of this Forum.

Safe days and Blessings ahead Angel07

Okie fella!

Mb

 

5/20/08 10:01am

Hello and Thank You so much for the lovely note, I just have to learn how to use this site so please bare with me/ I would love to join all of you out there just have to find my way. Well I really try to take the pain of my mind and Iam a firm beliver in the lord! I have alot of faith and trust in the lord. after having brain surgury in 2004 Iam very lucky and blessed to be here! I can tell you that I have tryed everything from A -Z not A-B, everything out there I tryed and did it just bothers me because I dont really know what happened to me as every time I turned around it was one thing if not anorther I was in a car accientin 2004 didnt have any pain pain till about 6 months after I have a mixture of things with me.I would be more than happy to share with you. not being a crey baby its been extremely hard on me as it keeps alot away from me as for doing much of anything simple things tieing shoes getting in tub washing dishs enen going to the bathroom SORRY but true and after all for so long......... its been really hard to deal with, I dont like when I cant find an answer to help what ever it maybe or someone else Iam a very caring loving funny out going person with a heart of gold and would like to share it with people how when you are homebound and in a contion like this?  if you read my post it tells you brain surgury 2004 neck 2005 and back 2006/now Iam looking at rods and swrews or a pain pump they are both scary I go talk with the doctor today very shorlty! it just seems as its never going to end I gusse because its been a on going problem all these yrs and still at it! you get sick of the pain 247 and the trips to the doctors and so on Yes I can see if there was some relive but its been a long long road for me. you take care hope you get this!!!! may god blesss you today and always have a great day please let me know if you recieve this. I would also love to get into the groups support means alot and I have no family its just me as I lost my mom last yr and my only brother  and dad when I was younger so I really have no support which is really inporant!THANK YOU FOR THIS SITE!!!

5/20/08 10:20am

Thought I would share a few words of encouragement.  These things I speak of are from my own personal journey and please remember to seek professional help if needed or to check on advice you read online!  i have know this age old friend chronic pain since childhood and have to be honest it took me most of my life to this present state I am currently at; one free of those narrcotics and other meds they (docs) had  convinced me that it was "my" solution to my circumstances. I know others do require them to manage through there days though.

  I have to say I belived that lil bottle was my personal savior and all!  I have always been a realist and figured this is what was safe and right for me?  I know we all need help with the transition through the differnet stages of our disability so I recommend all to be patient  "first and foremost with themselves" then your "family and doctor".  These medicines may help depending on your circumstances and I know some folks eventually have only that choice alone, but I assure you their are tools to help with finding peace of mind.  One must find the minimum of narrcotics needed to have Quality of life; and this should be done with a family physician to do this safely 'Not Cold Turkey' that is dangerous and could lead to more depression. The thing is friends depression and pain can go hand in hand!  I myself have felt the frustrations with those around me and the doctors. i realize the doctors are just as frustrated because their job is to heal and cure not cause harm and for some reason I think they know that alot of us left with that choice of a lifetime of medications will eventually wear and tear down our health.  I personally did not get to the stage of needing meds until i was around 25 years old and unfortunately sacraficed alot of childhood life by bein angry and depressed about my future looking bleak and full of suffering.  I know now that this had alot to do with how one character develops and it took some time seein a physcitrist about my self hate not towards others but myself; these are physcological battles I never settled and found that they haunted me later in life at 25 years. old.  I hope if anyone finds their situation to lead to that stage to do as I and find professional help. i can say honestly at the time maybe that pain managemnt helped me make that step outside the box I kept myself in my whole life.  When I found myself in real trouble that is one of a physical and emotional downward spiral;I voluntarily checked in to the hospital to have those able to help me phsycologicaly get back on my feet.  The one important thing is to do this before you give into the fear.  I found myself looking to numb my suffering and at the same time one tends to escape from the world; this is hte abyss that is tough to climb out of alone. Today and it took three years to get here I am narrcottic free and with my family physcians to do this safely.  The idea is to make things and living everyday as comfortable as possible; be it the shoes you wear the chair you sit in the car you drive' I have to say these things are something one will have to figure as you go along in life. i am sorry I cannot give the solution, only what helped me!  Quality is to me the postive people around my life and those that never dwell on my problem but treat me as an equal and know i may have a disability , but the abilty to do so many other things in life.  Contribute to somthing and make it yours and cherish the good days you have a postive memory is very healing and to remember those times; not all the hurt.  I know the pain tends to be constant and for me  it takes my breath away at times. I personally take a moment and remember its a sign to ease up or slow down a bit; but never give in or allow it to dicatate your attitude towrds "your day" " especially yourself" and "others around you".  If one can find a place to escape in creativity' be it Arts, Cultural activities, Church activities or really anything you find that brings comfort iin your life you will discover this is your God given gift to share with other and this is the TOOL no physician could have perscribed!  Remeber friend that sometimes people that suffer chronic pain tend to give more of themselves to others and be cautious with this because it does bring joy and these feel good endorphines tend to be addictive and you may wear yourself out by sacraficing your need to accomplish your short term Goals for wanting to satisfy others to feel good.  Their may never be "forever feel good" but their is and I promise the state in which you are starting to live evryday rather than just existing everyday.  

Myself the meds were too toxic and I found other means to redirect my pain postively into my silversmithing these last 13 years and at 38 years old am trying to earn back those 7 years I lost due to 280mg of Oxycontin evryday and those fentnyl duragisic patches; tahnkfuly after 28 days in the hospital I got off 'em all and liver and kindey recovered. 

It has been 3 years and everyday i find new ways of gettn through the day and am sorry for those that have to make that long journey to find the right TOOLS but if you stay the course and know their are those here in this forum that care and are here always to help you can do it. If you find the need to have someone hold your hand to help guide you in this journey like I did; take comfort in knowing you are not alone in your plight! you were never alone!

communicate with your physicain on how you want to better your future and not just one of bein content with your current situation.  It is a yearning a hunger to want to better your days ahead and to know this may be a life sentance that we have to acknowledge and face bravely everyday and with Gods grace you will find peace.

Hope your Physican provides you help today!

Okie Fella!

MB

5/20/08 6:11pm

well it wasnot easy thats forsure!! Hontesly Faith And the Lord thats what I think what would you like to know? its been extreamly very hard to do and deal with. I dont know what you would like to know so let me know if I can help I will thanks have a great nite where you from?Angel

5/23/08 6:44am

Hello! Angel07

 

It is good to hear your words and know their is so much strength in 'em.  Knowing we were never alone and God has always held us closer on the worst of days.  I belive His Grace is sufficient enough for my suffering and truly this sustains me and I find Peace in my everyday now. I volutarily gave up all my meds three years ago and it is truly an awakening of the mind and spirit.  I spent 7 years in group pain management therapy putting all my faith in those lil' bottles and it was me all along who had the anwsers to my problem.  It seems like you have had a long journey down that path of suffering and it is something every individual has to go through a self discovery of what is a pain free day?  One can build walls around like a defense mechanisim but in the end it will come crashing all around us. The structure of pain is a fortress which can only be chisled away; with much patience! I found over the last thirty years I was only pushing at the wall and never truly found its achiles heel "its weak point" thus I never managed my life according to my limitations.  I can say long term suffering can and will alter our psycological profile, it is tough not allowing others to enter our saftey bubble.  The fear of having more hurt in our life is hardly tolerable. This is the only challange I think I face and am trying to resolve.  All them years since childhood I guess I built up sum defenses to protect me and it does affect relationships..   not my business.   I found alot help with therapist an all, but it is a Hard Wired in my brain and just can't seem to set myself free of this natural reaction.  I am content though and have never been happier!    I just know their is so much more out there for my life.

 

Well' I wish you a Blessed Holiday weekend!

Okie Fella'

from Oklahoma City

MB

5/24/08 5:12pm

Hello and thank you for your reply!! As I am really sick of this have been pushing on 5yrs now and they just keep sending me from one doctor to the next, well after to pain doctors all these tests should have been perform and looked into Its like Iam at the start and always was, the pain so so intense it keeps me bedbound cant cook clean nothing and the tears that I cry from the pain is something else. its not just my back Well thats the worse its my shoulders neck headaches I get the whole package. and its really super hard to deal with I have missed out on so much you would think that these doctors would get it by now. well yes Faith is a big thing for me as for moving I really dont know how it is happening the lord its a struggle to do anything like I said hope you had a nice weekend as well take care please if you have time read the fathers love letter I posted take are Angedl

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