Dear Annee,

I am a 56 year old woman who lives with similar type pain 24/7.  You came to the right web site.  There are a wonderful group of people with similar pain who support each other via this site and a forum called the Daily Grind.  It is under managing chronic pain, Off topics.  I was at the end of my endurance mostly because of feeling so alone.  Non of my friends or family understand the constant pain and as you say........I look ok.  Sure, I do the grocery shopping.  I have to survive. They don't realize that I can't shop in a large grocery store because the extra walking puts me in bed for several days.

Your writing was beautiful.  I am so sorry for your pain.  You have been through so much more than I have and your information about all your surgeries has helped me to be more confident in the NON surgeries (although I have had many in my life) for the futur.  Bless you for writing.

This group of about 10 people are so wonderfully supportive.  They have changed my life.  I found them in September and I write almost everyday.  I hope you will take a look at us.  We don't always right about our medical situations.  It is more a way of getting things out on a daily basis and supporting others with their issues of the day.

I wish you relief.  If you want to write to me directly, just click on my picture and send a private message.

Gentle hugs,

Dockside (Deb)

Anonymous

2/20/09 1:38pm

i wont go into my troubles,they are however much the same of all of you..we are an elite group of people. not every one is like us? think how different we are compared to all those who jog,power walk qand ride bikes for fitnes. i get my fitness going doctor to doctor,10years now failed fussions,shoulder replacements and much more,bowel difficulty,you know the routine...i take 90mg of morphine, and 400mcg of aqtiq,it helps,make it a little more tolerable. i was already to "jump" then i found out i was to be a grandfather!now i live for her,makes things a bit better,so keep on goint through the hell we are in and sometimes a beutiful thing rears its head and makes things a little better for a little while?

I just wanted to write and say isn't it a pretty picture the world thinks of us.We do all the things we have to but only because we have to.Some people have children and some have other obligations.But we look just fine don't we.I am so p----d at the world.They take their mri's and cat scans but you cannot see nerve damage in that.So we are labeled drug addicts.People who are too lazy to do things.Not knowing that what ever we did do that day was a miracle in itself.I suffer from Fibro Myofascail pain syndrome,spinal stenosis,8 herniated disc,tmj.29 oral surgeries.I have gone without teeth for almost 2 years because of infection.I am too tired to go to these doctors office and tell them what fakes they are.We all on this site have so much in common.Most of the time the doctors rep is above reproach.But somehow people like us do not fit into that square peg.We are the round holes.No matter how many times I tell a doctor something will not work with me.They seem to think I am just stupid or uninformed.I do so much research I think I could better be a doctor to people in chronic pain.I have severe sleep apnea.So the only relief is from taking enough meds to knock myself out which is a bunch since I have a very high tolerance to pain meds.I also have a high tolerance to pain or I would have killed myself by now.I have a daughter who thinks I am a drug addict.Once that got around my family I was ostrasized.No one wants to be around us.Our life long friends suddenly are too busy with their lives to realize we are on the brink of not being here any more.I am glad that the American Pain Foundation does so much work in Congress to pass bills on the under treatment of pain in America.I am so tired of it all.I just want to feel normal.And if narcotic medications help just a little to let me do a load of clothes or go out and work in the yard a little why is it any skin of anyone's nose.They would be the first to scream for something if they lived like us.My work ended at 47.I am now about to turn 58.11 years of nothing but pain.I am so frustrated I could just go postal on some of these people.My doctors never get my calls,even when I go there in person and write notes to be given to them.The gate keepers.(people you have to go through to see the doc's) I think do this to make themselves feel important.Well I am at the point to where I am about to explode.I too am tired of being judged for just wanting to feel a little more normal.I know that all the pain will never go away.But what ever Helps the most then it is my decision which side effects I want to live with.I have spent 3 days in bed because of an antibiotic that has eaten my stomach up.So you are not alone.I am sorry for your pain.I acknowledge and validate your pain.I hope you can find an answer.People just are not kind.But every once in a while you will find commpassionate people here atleast.We help each other with our past experiences.I also have been told I need back surgery.And then he informed me after that he was going to put me in detox.My husband got so mad.He said did you even read her medical history.She has other medical problems for which she needs pain meds.And he doesn't take anything but tylenol or a b.c. powder.But he lives with me and he knows how hard I try to do the good sport syndrome.I was unable to sleep.And I thought I would come in here and just talk to anyone who feels alone.You are not.And I decided not to have back surgery.He told me I would have to have one right after another.There just isn't any way to know what the right decision is to make.Please know that we all wish we could go back in time and change decisions we thought were right.I am in prayer for you always....Jo

Cathy

11/26/08 1:00pm

Hi Jo,

My heart actually aches to read about your severe emotional and physical pain....and Annee's pain as well. I am on this website because I have suffered with chronic pain for years as well, but nothing compared to what you and Annee write about. I have seen people suffer with horrible pain having worked in oncology as a nurse and then the last 14 years as a licensed massage therapist. I've worked on people suffering with fibromyalgia pain, neuropathy, spinal disk fusions that turned out bad, and one patient had a metal reaction from the rods in her back that caused a low grade electrical shock 24/7 that nearly drove her to suicide. Like you, no one believed she was being tortured since she looked normal from the outside. There are so many people who suffer in silence because the outside world, including family members, can not relate to what you are experiencing. I think all we are wanting is some validation. I think that is all anyone wants...to be validated. Having unbearable pain to endure is bad in itself,  but then to be ostrasized and shunned as if you had a contagious disease is like kicking a man when he's already down. I just want you and Annee to know that there are no easy answers for the "why" of suffering and people's response to it. Probably because people don't know how to react to it when they see it in you...so they avoid you as a way of coping. It makes people uncomfortable. The medical community's response to pain is drugs...it has always been like that. There are few options out there other than drugs and costly therapies such as massage, biofeedback, psychotherapy etc...many of which insurance won't pay for. I recently read that the best pain medication in the world is distraction. As you wrote...if you get your mind off of your own pain and frustrations, and place them on others that are in the same situation or even worse...it helps you cope. Another thing that has helped me cope with my own pain or situations I have no control over is prayer...knowing that Jesus actual hears and understands what I am going through. He suffered and certainly understands my suffering. I might not be able to figure out why I have to suffer...but I know I can cope because He did. I won't give up on myself. Don't you ever give up on yourself! God Bless you. Cathy

annee mchughes

11/26/08 2:10pm

Thanks for your words of encouragement. Without Jesus, I'd be dead. He is my hope, my everything.

 

I wrote a whole recovery blog about prayer and the distraction of helping others.

 

I often wonder if going to Massage Therapy School would be a good option for me. The therapists I know are able to pretty much set their own hours. Something to pray about. I love the idea of giving others relief from pain and stress.

 

God bless you,

anne

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I just wanted to say thank you for every bodies comment.My husband is helping me to get dressed and I will be thankful to God for this day.So many poeple do not know when they are blessed until they lose everything.And then I think God gets your attention in a big way,He becomes #1 in your life.Maybe he wants to know if HE is still #1 although we are in so much pain.Blessed are those who are in pain for they shall be comforted.I truly cannot condemn people who committ suicide which often is caused by nerve damage that can drive a person insane.I try not to think that way.But neither will I condemn someone for taking their own life because the pain was too much.I will not believe that God forgives rapist of children,murderers,thiefs,unholy people.And would condemn someone to eternal hell when that is just where they came from.I hope everybody can enjoy this day as much as possible.I am going to see my 6 week old grandson today.I am so worried he has breathing problems.Please pray for Micah 6 weeks old....Jo

Hi Anne,

I cried reading your story.  I,too have been suffering from chronic pain daily.  I used to be a very active person.  I was in a car accident in 2004.  I was prescribed pain medicines for years for pain(back,neck,shoulders).  I started experiencing more and more pain.  A year ago, I went on a medical leave because I could no longer function well at work due to pain & fatigue.  I could not get good night sleep at night so I was always very tired the next day.  My former employer finally terminated my employment(I was employed there for 9 years) since I couldn't go back to work full time.  

There are times that I just want to cry all day because of pain.  I get very frustrated  because at times no matter what I do, the pain would not go away at all.  I feel I'm no longer in control of my body and that really frustrates me.  I'm currently seeing 2 chiropractors and a physical therapist.  I know they are also frustrated with me.  I no longer keep in touch with most of my friends because I feel guilty having to complain to them about my pain every time I talk to them.  

Like most chronic pain patients, I too may look fine on the outside.  I'm trying to understand what's happening to my body and still wanting to live.  I pray to God that I could achieve a happier, no-pain life in the future.  For now, I have to deal with my pain one day at a time.