I find it hard to complain. Don't get me wrong, I do complain, just not all the time.

When someone asks me "Hey - how are you?" my reply is usually "I'm well, thanks for asking! You?"

Going to pain management is kind of like that for me...

When I am sick (bad cold, flu, etc) I call and make an appointment because I am sick for goodness sake! Although I am in pain, it's a chronic issue, so it kind of goes on the back burner, where as the more acute problems are brought to the front.

What seems to work for alot of people is keeping a pain journal. Even if it's just a pocket calendar to put little notes like "pain spike today" or "reached pain level of ____" just a one or 2 liner should suffice. I don't do that myself. For me, it's an inner/mental issue. If I ignore my pain, maybe it won't be so severe... Like I said - Mental, baby, mental!

I hope you are able to figure out something that works for you soon. It's imperative your doctor know just exactly where you are in your treatment. Is it working? Things like that. Remember, he can only provide treatment based on the information he is given; if you say you are ok, he thinks the treatment is working, when in essence it could use a little bit tweaking.

Good luck!

I don't have any suggestions for you but I know what you mean. I'm bad to minimize my pain when talking to the doctor. I'll say things like it's just laziness or old age or something. Then I end up asking about him and his family and discussing his problems more than mine. I have been doing better since I have this unending pain though because when I went to him the last time I was so aggravated that I didn't care. I always feel like the doctor listens to people complain all the time so he doesn't need to hear me but hey, that's his job. I hope you can bring yourself to discuss all of your symptoms. If we don't tell them they don't know. Advice for myself as well as you. lol. I wasn't much help was I?
Good luck,
Debbie

I think what you describe is fairly common. It is difficult to say "I really hurt." We feel like we are whining, etc. I have a suggestion. Rather than thinking about how much you hurt, write down how the pain impacts your life. Think about it in terms of what the pain keeps you from doing, specifically HOW it has impacted your life, etc. This is what needs to be communicated to the doctor so he/she has a clearer understanding of what you are going through.

Why don't you keep a journal between now and then. Use the pain rating scale, (the 1-10 thing that doctors ask the patient to use) to rate each day. Jot down the activity and what you would rate your pain. example: Lying in bed -- 3. after shaving, showering and dressing -- 4 Going for walk -- 5. Pain at end of walk -- 8.

You can also add activities you might have normally done if it hadn't been for the pain.

You can also tell the doctor something that you cannot do now that you did do 3 months ago...like a year ago I was playing tennis and now I never leave the house because my leg will buckle.

The important thing is to provide relevant details, not just say "I really hurt." You don't like to say that and it is not very meaningful to the doctor, either.

Hope this helps. I'm sure others will have some ideas for you too.

Good luck.
Gwennie

but over time I grew more confident and comfortable with my doctors. Sometimes I get worried thinking that I'll come across as exaggerating or I wouldn't be believed flat out. But I know this isn't so because of all the tests and surgeries I've had. And of course I don't want to be known as a cry baby LOL. I don't know, it's just me and there is a lot of emotions involved when you suffer with chronic pain. I have learned how to communicate and express myself a little better by seeing what others have been through here. What also helps is using descriptive words about your pain such as sharp, burning, constant, intermittent, stinging, aching, crushing, throbbing, etc.

This is exactly what most people do. Some years ago I had to start going to the doc with my husband. He was undergoing some treatment that made no improvement in his condition. Every time that he would go to the doc I would ask him what the doc said. He would say nothing really just to keep taking the same meds. When I finally went to the doc with him (after about 1 year) the doc was shocked at the fact that there was no improvement in my husband. He said that every time he would ask my husband how things were going my husband would say fine. Anyway to this day I always go to the doc with my husband. Partly because he does not communicate what is going on very well and partly because he has short term memory issues. Is there maybe another member of your family that you may be able to take along that may be better at communicating what the real situation is? You must find a way to get this info to your doc or he will have no idea what is going on with you and therefore will not be able to treat you. Good luck and let us know if you find a solution.

Thanks for the advice and comiseration. I am going to take the advice and go in with a list of activities and aspects of my life that this has changed.
I have a real problem with the d*mn 1-10 pain scale because it is SO subjective. I mean if 10= "requires hospitalization" then how could I honestly say that I am an 8-9 if I am not curled in a ball crying? And my 4 might be someone else's 8? It's like grade inflation in our schools. A "C" is average, but most teachers don't grade like that these days... parents would go through the roof!
What I need to do when I go in there is start talking about what I can't do with my kids anymore. That will make me break down and cry and maybe open the floodgates to me telling my real story. It is just so hard to let myself be so vulnerable around someone I don't know really at all.

is that you write it all down, kind of like a daily journal and bring it with you to show the doctor. This might better allow him/her to get a sense of what your daily pain is.
I think it's normal to clam up, especially with a new doctor. Like everyone has said, it's sometimes hard to express that "I really really hurt, everyday."
For me, it was just a matter of getting comfortable with my doctor and making sure that I could trust him and really talk to him about what I struggle with everyday. He was also good at asking the right questions to pin point what he could do to help me.
My best advice is to record it somehow and bring it to show him/her.

everyone else here. i'm not even sure why I'm writing, because everyone has covered everything so well, but just wanted to lend some support. I, too, went through that as well. I was afraid that they would think I was exaggerating, or making it up, or that I was crazy. I have amazing doctors, though, and in fact every single one of them, it seemed, read my mind, and made an affirmation that I was not crazy, and that my pain is real, so not to worry about that, before I even mentioned anything of that sort.
My best advice would be to write it all down, whether in a journal, or even a letter to your doctor expressing the amount of pain you're in and how your quality of life has decreased. That is one of the big things that they take into consideration. If you're in pain, but can still function normally, it seems (in my opinion) that they think you have everything under control and it isn't affecting you negatively. But once you express how much it has affected your quality of life, they tend to be more reactive. Bringing your wife to your appointments is an excellent idea, as she notices the changes in you, more than you would guess, and she could be more open and honest with your doctor than you. If the doctor hears that from someone other than you, they will have a better understanding of your situation and where you are at with your pain.
Anyways, I hope your appointment goes well, and you are able to get the support, answers and plan of action that you need. Keep us posted on how it goes!!

Thank you everyone for the help. It really made a difference at my appointment today!

The thing that helped me the most was making and taking a list of activities that I used to do and enjoy that I can't anymore. Everything from work to gardening to sex. I purposely included plenty about my kids and sure enough, the tears came.

I can't say it was cathartic, but it did help me paint a more complete picture of my life for the doc.

The result: we are going to try gabapentin (in addition to my other meds), get a new MRI (Friday) and possibly a new consult with a surgeon.

THANK YOU SPINEYS!!!

I am so glad that it all worked out for you. Hopefully now you are on the road to reduced pain and being able to do at least some of the things that you love. Definitely seems like you are on the right track. Keep us posted.

Being positive through adversity is a quality and it may well be that that through our childhood we are encouraged or nurtured to be that way.

For the most part we do not want to show any weakness, even to ourselves and when asked for our opinion we see some weakness in divulging our reality. That is Ok for a while and we need some balance in expressing our secret difficulty, we may think others would judge us and some surely would, without that understanding of our attempt to keep our reality hidden. Some of that may be bravado in not wanting to feel needy or different or face up to the challenge ahead, if we do not admit it how could it be a problem. At least in hiding the real us we are trying not to live within the pain and develop a persona that attempts to encourage and support us.

It is always a balance of divulging sufficient to infer necessary assistance and not an opportunity for those who have knowledge of our need to metaphorically beat us with that knowledge. It was interesting to see driven patients at our PM to be so competitive, to address every physical challenge as an opportunity to show normality. Stoicism was seen as mandatory for self improvement in PM and credited with the success of most clinics, it was suggested that success was in identifying those more stoic than techniques used. “Our fate more often depends on the opinions of others rather than the facts, it is a good idea to create impression that things are going well ” it does get us through.

In not letting anyone in, we build up that internal pressure wishing for some recognition while simultaneously hiding those indicators of need from those best placed to help us. Any good doctor knows we are living through our own game face behind that outward presentation lay more masks of illusion.

My doctor would say how are you !!!! that for the most part that was sufficient to set me off, I had lived with that guilty build up between visits and here at last I could present the real hidden me. Perhaps it is easier to learn openness than stoicism, we all live on that knife edge of reality, the precipice of “what if” “maybe” or “wishes”

In reality I asked my pm team for the truth, not an expectant prognosis or conformation of my own developed fantasy. He was not saying the words I expected or encouraging false hope, I may well not have wished to hear what he was saying, should he have continued to tell me what I wanted to hear, even in the knowledge that it may not be true.

Embrace stoicism it is a gift, develop a balance of how to divulge your needs and be assertive, that emotional loss of all the things we can no longer do is difficult, regret is not in what we have lost, but what we now do and how we develop in the future. My own children are living through my chronic pain existence, many things we can do and it is in those, the good memories that will be measured, that even through adversity, we made a positive impact. Even with pain and more probably because of it, we have many gifts to share, tell us your concerns, here you can be yourself. Use this as a platform and sounding place to let go of that constraint, it will help you move forward, better out than in.

Sometime the measure and ferocity of what we keep inside is measured in how we describe our pain to others, making a drama of everything may be the opposite end of the spectrum and finding a harmony of balance may help us all. In the knowledge of how we are behaving we do then have some responsibility to seek out all those who can help us change if required.

I do have realism in my own stoical existence and learning when to ask for help and how, we all feel guilty in not being able to endure chronic pain, we should not, we are doing a fantastic job that goes sometimes unseen and unacknowledged, not many could cope as well as we do as a sector, I am proud of all things I try to do now.

take care and keep posting.

John

Thanks John. I appreciate your post and it has given me some good things to think about. This is quite a journey we are on and I really value every one of these posts from you folks who have spent more time on the "pain train" than I have. Your wisdom and perspective really help.

As a very introspective (and maybe even contemplative person) I struggle to wrap my mind and heart around what is happening to me. Yes, I think too much. It is just how I am. But that is why every day, I begin to value this community more and more. You all make me realize I am NOT alone and your posts and experiences help me direct my incessant thinking in a more productive and realistic direction instead of focusing on, as you put it, "my own developed fantasy."

As my doctors are trying to help my body, this community is really helping my heart and mind. Thank you.

Within that guise of my own 20 year journey I am mandated to ease the plight of any individual following my path on the basis that the more knowledge and skills we have the better prepared we are to cope with the future. I am not saying my way is the best way, only that we have to travel the optimum route for a more equitable existence, we have to find what works for us as individuals.

We must never think that is some way we are to blame for our floundering search for help and finding those sufficiently able and giving to support our individual plight never easy. It is hard not to think of the pain that consumes us and the trick is to find some balance of recognition, in thinking too intensely we are living “ in ” the pain and it can if we let it become who we are, rather than the difficult mode of progressing simultaneously in parallel.

You will learn more about yourself than you ever imagined and hone those inherent skills you are blessed with. In being introspective you have your own finger on the pulse, the important thing is what you do then with the knowledge, it takes time patience and understanding, to be kind to yourself.

Your family want to help and are learning also, I do try to enable them in developing the life they have in conjunction with my own needs, nobody asks for this situation and we are all doing well.

It is not easy looking as to why we are in this situation and for the most part that information does not help with us coping in the long term with the pain, many know the origin and complexity of the pain they endure and still with that knowledge find it hard to live a life and progression existence.

Always grasp that inquiring self assessment, it enable us to keep the continual improvement going, however immaterial they may seem at the time, those collective successes give us confidence and will swell into a better mental outlook.

Those girls are looking to follow your leadership and together we can all improve a little.

John