Coping with Constant Pain

[chefathome]

Hi! I have herniated discs L4,5-S1 and have not had a pain-free day in over 13 months. How do you cope with immobility and pain? The only times I get out are for medical treatment - I just so wish I could go out for meals or shop or get groceries. How do you handle it? Do you go through phases of grieving for what you do not have? Normally I am pretty good with that but this past week things have gotten to me and I am really missing things I can no longer do. We are relatively new to town so I do not know anyone to visit with. My family is now about six hours away as well. If I coud I would love to get out into the community and volunteer somewhere but I am unable to sit or stand for more than about ten minutes.

There is only so much TV to watch! Thank goodness I LOVE to read - have read over 200 books in 13 months so am feeling a little more knowledgeable about some things. You can never have too many books!

Thankfully I am still able to find pleasure and joy in things - I have tons of hobbies. I realize there is always hope - it just seems distant when pain has not improved in so long.

[Mark N]

It sounds as if you are handling things just fine. We often go through a grieving period as we have lost a big part of our life. I went through being angry about it, discouraged about it, hopeful that it would get better, and then finally accepting that my life has changed for good unless I have a miracle cure.

I have found that finally I have to deal with each day and only that day. If I think about how things used to be I get depressed. If I think about how many years I am going to deal with this pain it gets to be overwhelming. But if I think about getting through today I can handle it. On really bad days I just get through the moments as they come - I get very much into the NOW. This is what has worked for me. When I have a good day, I do all that I can. When I have bad days or a bad spell then I do what I can to control my pain and don't worry about what I can't do.

It isn't an easy adjustment dealing with constant pain with no end in sight.

[slipnslide]

Chefathome,

I don't want to say that you DO eventually get used to it, because you don't:(. For me, that would be accepting it and accepting defeat;). I don't think I'll ever get used to it, but I have become "accustomed" to dealing with it, but I still keep fighting for some sense of normalcy in my life.:) I forget what it's like to not have pain, so days where my pain levels stay on the lower end of the spectrum are now my "good days".

Finding things you used to enjoy and still can do, like reading books, is good. It takes your mind away from the pain and reminds you of your life before pain, even if for just a brief moment.

Best wishes,

Kim

[cindybear]

I have a pretty bad back also, but they will not even do a MRI or a cat scan..So I do not know how bad it is, Just know I have Artritis in all areas of my spine..I take morphine for it..It is the only thing that has helped..My pain Doc says the only reason for a mri is for surgery and no one is going to do surgery on me...Which I am OK with...I have a inoperable brain aneurysm..(have had this monster for 8 years..) and along with it , horrible pain..So after many years of denial and trying to get help any where..Had 1 stent surgery and allmost died of a stroke..Had no coils..was suppose too..No one will even attempt it..Way to dangerous..I would probobly die..So it is best to just live with the pain they say..So I do..So I have acceppted my fate..because I have done every thing possible in this life , unless modern medicine comes up with a miracle...and I am still hoping for that to happen..But I doupt it..So ever since I was 38, I have known pain, had to stop my Nursing job that I loved with a passion..And now it seems my back and hips are getting worse and worse with arthritis..with every year..Just by getting X-rays..So I just live day by day, Do not worry about tomorrow,,We are not promised it..And make do , with what I got,,I love to read to, I have prism glasses for my double vision..Costly, But What would I do if I could not read, or if I seen double all the time,,. Hugs, Cindy

[Diandra]

Hi Chefathome,
Welcome to the forum.

You did not mention what you do for pain mgmt but I assume you are seeing a doctor who is giving you meds or treatment for your pain. That is obviously the first thing to do to cope with pain and immobility, finding a good pain mgmt doctor that is truly helping to manage the pain. I don't know how it works in Canada but I found a huge difference between my regular doc(Rheumatologist) treating my pain and a pain mgmt. doctor treating my pain. The pain mgmt. doctor gave me as high a dose of opiates as necessary to make me functional and my regular doc was afraid to give me that much yet was sharp enough to refer me to the pain mgmt doc. It sounds like that is what you need to do if the only time you go out is for medical treatments. It sounds so obvious but so many times people come to this forum and they are being woefully undermedicated and are just absolutely miserable(and understandably so). I will be honest with you that just before I was referred to the pain mgmt. doc, I was suicidal because I could not deal with living in such pain daily. I did not know that there were meds to treat the pain and make me functional again, I was able to drive again and actually be social which I had not been for a very long time.

You talked about volunteering which is a great idea and there are opportunities to volunteer when you cannot leave the house. . There are phone reassurance programs where you can call to check daily on elderly or ill people who are homebound and live alone and have no one. One program I did was to call the same person at the same time every day to check on them. There are lots of websites where you can find out about volunteer opportunites.

I also found when I had to stop working and was homebound with pain, it was a time to re-visit my spiritual side which had gone under examined for too long. It was very helpful.

I wish you the best. I know it is hard and I do find that it is like a roller coaster of health issues and emotions and no one is more important than family and friends and that includes having a great pet around. It is amazing what a pet can do to fill the void.

Take care,
Diandra

[alex45]

Hang in there and good luck.
Peace
Alex

[Kandra]

There is only so much TV to watch! Thank goodness I LOVE to read - have read over 200 books in 13 months so am feeling a little more knowledgeable about some things. You can never have too many books!

Thankfully I am still able to find pleasure and joy in things - I have tons of hobbies. I realize there is always hope - it just seems distant when pain has not improved in so long.

Welcome to the forum :) I'm sorry though that the issues you're experiencing have brought you to us!

I think the others have given you wonderful advice..I just wanted to add my voice and support. Do your docs give you a reason why they don't want to do any type of surgery or other procedures?

[Boxerlover]

Chef, for me it took a couple of years to acknowledge that I wasn't going to ever be the person I was before, that this was real. My husband got transferred right at the same time my disease was escalating so we ended up moving to a new state, far away from friends and family and support. So that made it very hard for me to adapt to being ill.

He got transferred again and although we were able to move back to our home state, it was still not too close to family. Although I had now realized that this was real and my new reality, the next two years were very hopeless for me. My husband and I almost split up and again my disese progressed to the final stage.

Then very slowly we began to adapt and learn to live this new way of life. It never gets easier as some new thing happens that we have to learn how to handle as I am now, but we are building new memories and new routines that are enabling some joy and happiness to come back into our lives.

It sounds like you have a great attitude and have adapted well. There are ups and downs as in life in general but it never ceases to amaze me the courage of the human spirit.

Welcome
Melissa

[911]

welcome to the forum , cronic pain affects everyone diffrently some very diffrently and alot of docs dont stop to think about the afecct this condition has on us , it pretty much ruined my being a man a father to my son because back in the late 80's i was seen as a drug ADDICT. fortunatly things have changed a bit with the exception of those who were around when i was thought to be a drug addict with psoriatic arthritis ( like rhuamatiod) namely my family , i think the biggest loss for me was my family and for a while i lived in a rooming house coz none of them would take me in ?? go figure i felt so abandoned no where to run , no where to hide , i hop this doesnt happen to you in any way shape or form and i am sorry for venting i could hae gone on and on ,,,911,,,,aka ,,,,dave

[Peter B]

Chef,
First off, Welcome. You'll find a treasure trove of valuable clinical info plus myriad amounts of personal opinions here. All you have to do is pick what applies to your own life. I think Mark gave you the best possible answer. Take his word for it, he went a long time in his condition to reach the conclusions he arrived at. You'll find him the most responsive listener here.

I wish you luck dealing with the various negatives associated with chronic pain. To call it a roller coaster ride is putting it mildly as you already probably know. Anyway, welcome again and good luck finding your own "comfort" level.

Pain free days,
Pete