Hi, it was a shocker to me when I started to notice specialists were talking to me in ways of managing the pain in day to day life. Nothing being said about cures or fixes. It took a long time for me to accept this. Maybe it has been recent that i have finally accepted my role in life. Loss of job, loss of anything physical, loss of friends, loss of life as what I knew. I still can't really believe it and I do try to do things but most often i end up feeling disappointed with my limitations. Day by day, hour by hour, my condition changes leaving me guessing as to what I can do. I wish it was more cut and dry. More definite. Give me the rule book and at least I know how to play the game. What I have is just too strange. Thanks for listening.

I have had chronic pain most of my life so I almost consider myself lucky that I didn't have a before and after.

For me, I've always had IBS, arthritis, loose joints, NF2 and other things. A doctor once told me to focus on what DIDN'T hurt and that actually helps a lot.

For me, it's been about mourning not having a "normal" body but it's also been about feeling incredibly blessed to have a lot of doctors and healers who listen to me, respect me and are compassionate. I've had a few duds, but for the most part I've been really blessed.

Humor has helped a lot too. When I can, I try to joke around.

I still struggle with not being able to be as productive if I want to be. On great days, I feel I could work full time. But the next day I can't move. I laugh with my PT person about this because I'll go in all messed up and she'll ask what I did and inevitably, I tried to do some yoga or I stood too long or whatever. And we shake our heads together.

It's also frustrating to me to be at the doctor so much. I have PT twice a week, the chiropractor, the acupuncturist, the MD, the massage therapist and so forth. I feel like a lot of my social life is medicine.

I have found a ton of alternative options that really seem to help a lot but I will always have good days and bad ones. Today I'm not able to walk much so it's brain work today. Hopefully tomorrow will be better.

I went through a lot of trauma all at once it felt like, getting an injury at work, getting assaulted...it took a couple of years to realize my health was permanently damaged and some of the symptoms would recur- especially if I do too much. Then it took me a while to get used to my limitations. Fortunately we sold our family home so I had money when I couldn't work, or I don't know what would have happened.

My PCP dr is coming 'round now she's starting to realize how crappy my insurance is ( they even tried to blame her for me not getting a claim paid! ) and now she understands I'm not going to request narcotics from her ( I have a very bad umbilical hernia and I am not taking anything which causes constipation for one thing- but if I need stronger meds down the line I will request access to a pain specialist )

I think doctors like her are being exploited as much as patients to be honest- when I was self-pay she got $100 for seeing me, now she gets $45...and because the insurance covers virtually nothing she has to act as a specialist a lot of the time- when specialists get $320 for the same appointment.

The biggest shock and change to my life from becoming ill has been the reaction of most of my friends- if you'd asked me before all this I'd have said oh I have lots of support. Not so- it all melted away immediately. I was housebound for 8 weeks @ 3 years ago and one friend dropped in some laundry detergent. I have received no other help that I haven't paid for.

Changes your whole outlook....

This is a great topic.

..I think you described the realization period so perfectly.
.. I've never quite been able to express that.
I might use your post to tell my family
What I tried to tell them at the time.

.. I'd had CP for years before I had the pain that
Altered my life so completely.
.. and mine was such a non event
( was walking across a room fine one moment..
Struck with intense pain
It never left.
Explanations later ranged from PHN from shingles without rash
To thoracic RSD....
In any event.. some form of neuralgia.
..Of which I also had and got
Occipital and trigeminal..
Bla bla bla
... but.. yes. HELL YES..
To your description of what the realization
That this was now my life was like.

Again..
Really good post
That I'm sure everyone can relate to on some level

Hugs
jc

Jordan
Very accurate descriptions of feelings. I know you have disbelief in there but a big one for me was also denial. I think that went on for about a year or so.

i kept believing that, no I will be fixed, I will not stay like this, keep searching for the answer.

It's like searching for the end of a rainbow. Never gonna happen. So what am I left with - learn to deal with it. So I am.

But still a rough ride to go through isn't it.

Jen I am so very sorry that you experienced life this way. I hope you were able to get some justice in some way for all the harm they did to you. Your management of CP is something of a miracle. You could write the text book!

I wish you didn't need to have more surgery. But I do hope they find better drug options for you.

Thinking of you with pain free days forever because you deserve nothing but happiness and joy in life.

And I wish that everyone with CP is able to have at the least pain free moments.

In reading comments from others, I wanted to bring up a couple of things.

On the topic of friends, I have found that my non-pain friends respond best when I have told them clearly what I can/can't do and when I tell them I may need to cancel at the last minute depending on how I feel. Get-aways, expensive concerts, once in a lifetime things - I don't sign up for those. And if we make plans and my friend is REALLY excited about it, I tell them to please have a back up as I may not be able to go.

The most support I've found is from others who have chronic pain. We sort of tag team with each other - taking each other to surgeries, helping with meals, keeping each other company. Apart from brainstorming and occasional venting, we try not to focus on the subject of our illnesses. Too depressing.

On the topic of medicine, if people are looking just at prescriptions, that's about 10% of the answer. I use a home ultrasound machine (about $100) for my arthritis. I use it 4 minutes on each bad joint several times each week. I'm also looking into the thing you wear on your head for migraines. http://www.cefaly.us/?gclid=CP6Rm6q648YCFQQHaQodJdIAPQ

Chiropractors have a number of solutions - kinesio taping, cranial adjustments, cranial sacral work, traditional adjustments, massage, etc.

There's also acupuncture, acupressure, acutonics, dry needling, electric stim, reiki, rolfing, etc.

There are herbal remedies. People often feel these can't possibly be strong enough, but if you live somewhere it's legal, cannabis oil has amazing healing properties. People with cancer swear it's the only thing that helps with nausea and it's been known to actually cure some cancers and help tremendously with epilepsy. It's very strong medicine. And there's evidence that it helps with chronic pain.

Please don't give up if you've only explored traditional medicine. There are a TON of other alternatives that could help.

51Percent,

Holy hell, my heart broke reading your reply. I know I have zero power to change the past, but I want you to know how truly sorry I am that you had to experience those things as a child. No body should ever have to go through anything like what you did...regardless the permanent physical effects -- and mental and emotional, because you did NOTHING to ever deserve anything like that. You were a child for f*ck's sake. I don't know your parents or grandparents or family, and I can't speak to them or why/how they justify their behaviors, but you are an amazing survivor that we can all admire. Thanks you for your honesty and bravery...you really are incredible and I just didn't want you to forget!!!

I remember all to well when I didn't have pain, and then got hit from behind in a work vehicle while at a dead stop. The company made me continue my route and not wait for the police to come! That is when my Fibromyalgia really started but it was still mild. I ran a half marathon and all hell broke loose. I had a lot of pain in my back and fortunately had a great doctor at Kaiser. I had to move from San Diego to this small drug filled town but once again I was blessed with a great doctor. He not only believed in Fibromayalgia and chronic pain, but his mother also suffers with both. As for my Psychiatrist, who I only see for about 10-15 minutes once every 3 months, is there to support me and help any way she can. My profile pretty much covers what I have to go through with my different health problems but I know one thing for sure, having good doctors is what will get us through this hell. I'm not saying I didn't have crappy doctors because I did, but they didn't last very long. Hugs GB

@51percent
no wonder you know what so many of us have been through- you've been there.
So sorry, your mother must have been an evil woman, who hurts a child...?and so wonderful you stopped the cycle of abuse with your own family! That takes a certain strength.

I keep hoping I have done enough with my own son but I won't know for a while, he's still immature and acting out. All my husband's family were child abusers, believed it was 'discipline' and my father in law once told me I should have beaten my son more and allowed his father to beat him. He blamed any bad behavior of my son's on that- not on my son's father abandoning him of course...my father in law abandoned his own kids around the same age.

Earlier this week my son had a tantrum and said he wanted to punch me in the face. He stormed out. When he came back I told him in no uncertain terms that I will never be hit again, and that our relationship is over if he hits me. It breaks my heart- but I'm too old to go through all that again. He apologized and said he didn't mean it and wouldn't do it, but I've told him over and over a man who hits a woman ( or anyone who hurts a child ) is scum- it's totally unacceptable.

Unfortunately too many people around the world still think it's okay- instead of setting a boundary it's blurred.

I think my sister in law's hatred of me came from when I spoke up and said she was abusing her child- to her, I never reported her, but I told her she was being abusive and she needed to stop lashing out. She never forgave me. Her daughter is a very neurotic high achiever now- so their whole family laugh at me for not hurting my child. I don't care- I have a conscience and I can live with it.

But it does seem unfair...

@51percent
sending you all praise and love and honor- it's humbling what some people have to endure. And overcome.

@51percent
I don't think my son ever saw my husband ( ex ) hit me- he has seen him ranting and threatening and being verbally abusive, and the night my ex attacked me and I was afraid the neighbors would call the police I threw him out. No way was I letting my son go into foster care because of his father's unacceptable behavior. I could deal with my own problems.

But by not reporting my ex to the police it backfired on me too...no one believed he was 'really that abusive'...or I'd have reported him. And he can be very convincing and charming- though I doubt his anger issues would stay hidden from anyone in close proximity for long. But he's learned to hide it- hides behind work and travel, and abandoning our son etc.

My ex always said he was abusive because his mother beat him as a child, not his father beating his mother...my father in law always said it wasn't abuse 'just discipline- he was a naughty child'.

When we look at how women are treated in other cultures, it's even worse than here but I remember feeling shocked by reading Texas Republican Party Platform where a parent shouldn't be charged with murder for 'disciplining a child to death'...so it's here too.

I think most parents have lost their temper with a child- it happens- but then we pull back, apologize, put things right, etc. Not continue and justify it as the child's fault. We're the grown-up.

When did I know...

Well the sexual molestation from my father was from 8 - 13;
The physical and mental abuse from my mother was from 5 to 17;
The cutting/self injury was from 12 to current at times.

The Cronic Pain started at 17 when Degenerative Diseases I was born with started their march into life altering destruction of my body. The Surgeries stated when I was 19. The pain has been there ever present and never stopping since I was 17, the day I was on the field practicing a band march for Friday night and I went to turn my left knee one way and my knee cap turned 18 degrees in the other direction because there was no longer any cartilage or muscle tone holding it in place. I knew at that point that the active life that I knew and enjoyed was over and a very painful one started. I've been in pain everyday of my life sense. We've added several other diseases, 30+ surgeries, more physical therapy that any person should have to endure, a loss of every organ in my body to the point that I'm down to a lung, I guess I could live with 1 of those. A diagnosis of BiPolar disorder at 20 and just something else to manage and battle and get under control so that I could live somewhat of the life I'd planned at one time. These days the new medical issues come in almost monthly, if it wasn't so scary, it's be funny. My body is crap, it always has been. Right now I'm dealing with a renal system that is falling apart and not working, and a new diagnosis of Peripheral Neuropothy. So, yeah my whole adult life has been about pain and tests and surgery and more pain. The pain from my childhood was a whole different kind of pain and I don't combine nor compare the two, that pain just gets put in it's box and stashed in the back of my head where it belongs.

As for the chronic pain that I deal with day after day, hour after hour, it will take me to my grave in time. For now I don't let it win, I work part time and I struggle with a couple small hobbies and do a few charity jobs...those actually make me feel as good as the people I work with.

51Percent, was just wondering if you've tried methadone for your pain. It's a synthetic opiate so I'm wondering if you would have the same allergies to that as you would the medicines that are real opiates. I've been on methadone for 4 years. I started at a small dose to be cautious, and I haven't had any of the loopy feeling that I did when I tried oxycodone.

@51 percent:

Sorry to throw your theory off a bit, but:

Neither of my parents were abused in any way as children. My "fathers" parents adopted him when they already had 5 mouths to feed and back then that was a lot. Both of my parents were raised in good, christian homes......

They were just psycho, evil, pedophilic, cruel people who like to beat, molest, and do whatever awful things they could to their kids to show their authority and keep the kids scared. Nobody taught them that. Some people just shouldn't be allowed to be parents.

I've taught my boys very well that hitting and being physical is never the right thing to do and it doesn't solve anything. They both know that there is no reason to ever hit a woman.

Jordansmamma, you asked what it was like from being relatively pain free to knowing the pain would change our lives forever...

Well, about 25 years ago I kept coming down with one infection after another...strep throat, ear infections, bronchitis...over and over. Then in the springtime I got knocked flat with fever and infections to the point I couldn't get out of bed except to go to the bathroom. My hubby had to rush me to the emergency room three times in one week because I couldn't function, and I was delirious.

Then for a month I was stuck at home with pain from head to toe. I particularly remember the pain in my rib cage, which I now know is costocondritis. And then I couldn't work due to the pain, so I lost my job. I managed to crawl through the last few classes I needed to get my degree in accounting. And then I decided to take the CPA exam, which is a 16 hour exam spread out over two days...yes, it's grueling.

I did ok on the exam, I didn't pass, but considering I couldn't function hardly due to pain, I did ok. Well, I took this CPA exam twice and didn't pass due to having to leave early from the pain.

During this time I was seeing a rheumatologist who was knowledgeable in Fibromyalgia. He knew I had taken the CPA exam twice. I still remember what he said to me. He looked at me kindly and said, "you are putting yourself through this grueling exam, but you have failed to realize that you will never be able to work again". He told me to stop putting myself through all that stress.

I sat there absolutely crushed. It had been my dream to be a CPA. I wanted to believe I would get well, and have a career I totally enjoyed and have money to spend. My dreams that day were destroyed.

But life went on. Things changed. I have never been able to work at a paying job. But I have some very good, happy times. I have found some new, good friends who are understanding of this illness. I volunteer my time at church and around the community. Before volunteering for a position, though, I explain that there are times I can't show up due to the illness. People have been understanding. My volunteer jobs are very short time wise...an hour here, maybe two hours there. But they make me happy and I am able to help others.

So that's my story. My BIG moment of understanding came when that doctor sat me down and told me my future would be vastly different than my dreams. And I've accepted, and I've grown.