ongoing pain two years after acdf

Oceanfish:
Your posts clearly articulate the emotional frustration that accompanies your pain. A frustration that grows and encompasses more of the forefront of your thinking as the pain fails to resolve.

I read an article in this week’s New York Times science section that there are estimated to be 40 million Americans who endure the misery of chronic pain.

That’s a sizeable estimate.

Medicine often has the ability to “fix” what is ailing a person with limited degrees of success. Less than full recovery is true for many people, a simple reality that speaks to the limits of medicine to replicate the inherent anatomical and functional perfection that is a healthy body. Aging and wear and tear are also at play as to why we hurt - more evident as lifespan expectations lengthen.

Living with pain myself, a key aspect has come in working with a counselor/psychologist on being able to express appropriate grieving along with acknowledging my pain and tactfully placing it to the side so not to encompass my every wakful moment. This is constant work in process. Cerrainly not everyday is rainbows and unicorns. But my continued “work” with a pain counselor/psychologist has lessened the weighty burdens that pain imposes on me. A lot of the work with a pain counselor/psychologist filters down to making the best of a less than ideal situation.

I have an ileostomy and wear an ostomy pouch that collects fecal material. I never foresaw that an ostomy pouch would be on my life’s trajectory. Never. Accepting and adjusting to sharing space on my abdomen with a pouch of poop has been a more lengthy process than the physical healing from the surgery and scars.

I think the same is true of persistent pain. Psychologically coping to pain is a lengthy and undulating process. Pain permeates every aspect of a person’s sense of being. It is an unwanted companion. Seeking the help of a trusted pain psychologist/counselor might be a beneficial step in understanding the nature of your pain, how pain affects you and your nuclear family, finding appropriate expression for grief and loss, and finding the whereforeall to live your best life in spite of pain.
Karen

DMO, it is not uncommon for people to have surgery & end up with chronic pain. The drs can fix the mechanical issues but there is always a potential for a patient to have pain later.

Looking at your list of things you are doing to help alleviate some of it seems to be ok. I do have a question, on the days when it's really bad, have you ever thought about what your activities were the day before? Was that a day when the stress level was in high gear, did you do more than usual that day. The other day I had to go to the store, we were out of everything, lol. Normally my husband helps unload the groceries. He is down with his back & walking to the bathroom is sketchy right now. There was no way I would have wanted him trying to help me. I carried in 2 gallons of milk, 4 gallons of tea & close to 20 sacks of groceries. I have my groceries sacked light, the weight does me in. I make numerous trips back & forth getting groceries in the house. The gallon jugs did a number on me. I had the horrible burning in my left shoulder & across my shoulder blades. I take a low dose of Gabapentin, it does help, however, I aggravated things with this activity.

I have probably mentioned this before, I have been in pain mgt since 1994! I live in the DFW area, a very large area. Pain mgt was just starting up here at the time. We had 2 facilities at the time that handled chronic pain patients. My goal with pain mgt was to continue to function so I could have a life & keep working. This is a long time to be a pain mgt patient, lol. But, it was nice having everything done inhouse & not having to go here & there for different things. When I first started water therapy it was with this dr. They had a physical therapy center on the first floor complete with a large pool. Warm water is wonderful. I went to PT after work 3 days a week. I had long days & got home at 8:30 at night. They had extended hours, most places closed at 5:00. None of it was perfect, but it kept me going.


DMO, I have a question for you. What do you do for enjoyment for you, not your family either. Once before, I remember you talking about you wished you could be on an island fishing. Do you like to fish? If you like to fish, go to an area lake or pond if that is possible I love to fish, it is so relaxing to me. I can sit there in the sun & I honestly do not care if I catch a fish or not. It is a place I can be happy & relaxed & I am not thinking about anything! Keeping our minds occupied with things other than pain or how bad we feel goes a long way. We have a place at a lake about 90 miles from here. We go there when we can, but I still like fishing on a bank better than the boat. My grandson is quite the fisherman, he & I go to ponds around here & fish. Both of us love being outdoors. I start my day outside drinking coffee, most of the time it isn't daylight. It is quiet & peaceful & helps me start my day in a better mood. I love to watch the birds & squirrels in the mornings, it has a calming effect on me. I also put out peanuts for the squirrels & I have a couple of regulars, lol. I do this every day, year round, even in the winter. Distraction really does help. I do a lot of different things to help distract myself. Sometimes, it's as simple as going to Star Bucks to get a coffee. I make sure I have "me time".

I understand the fear factor that comes with chronic pain or any condition. I remember the never ending days of worrying about tomorrow out of fear of the present moment. What I did not realize was the fear was robbing me of life. I wasn't in the present moment, I was too busy worrying about the next day. That is no way to live, a great psychologist that understood chronic health issues helped me with this. She was right when she said do not let worrying about tomorrow rob you of today. The unknown fears can cloud reality. I cannot get back what I missed out on when I was in this state of mind, however, I now know how destructive that thought process was. I don't have everything down perfect but, it's not about being perfect.

Just a quick thought, keep in mind when sitting you need to be sitting in a chair that supports your shoulders & neck. Sitting on a couch may not be giving you the firm support you need, unless it is reclining type couch. If you don't have a recliner, you may want to consider getting one. Shopping for a recliner is something to take your time by sitting in one to find the right fit. Some recliners can be too tall & cause the head to lean forward somewhat & that is not a good fit. What about your mattresses on your bed, what is the age of them? Do you swap out your shoes & not wear the same pair every day? I know you walk every day, are you wearing a good walking shoe?

Enough of my rambling!

Hi dmo. I just wanted to say hello. This is all a frustrating business. Pain isn't just something we have to tolerate we also have to function in relationships, daily life tasks like carrying groceries...all of it along with the personal disappointment of realizing it might not get better. I am just realizing how little Drs can do about much of this. Sorry to be Debbie Downer I actually was writing out of friendship! Have a good weekend.

DMO, if you will google "psychologist for chronic pain" you should be able to find several in your area. If that doesn't turn up many, try "psychologist for chronic health conditions" & you will find many. I just did this before posting to see if it would still work & it does. I would call any of them that catches your eye & ask if they treat people that suffer with chronic pain & if they accept your insurance. I was extremely lucky that mine was a fit for me. You may have to try a couple until you get that fit, but do not get discouraged.

I have always been very high strung. I never really knew how to relax. In all honesty, the only time I could relax was when we went on vacation somewhere. We spent weekends with friends camped out in rv's which was great. But at the same time I always felt like I was trying to cram in so much in a short frame of time. If we were home, I was always in high gear. I think you will find this so true with a lot of people. At the same time we were in what we felt like control of things. Chronic illnesses can often take that control away from us & cause more harm than what we started out with. I only wish I had gotten help much sooner, it would have saved me a lot of grief.

You are into the salt water fishing I see, lol. Oh, there is no way I could handle a rod that size, lol. I have a small open face rod & reel that is probably 25 years old. The grip looks terrible but it still works for me. A couple of years ago my husband stopped at a garage sale & came home with several rod & reels & 4 looked brand new. One caught my eye as it was almost identical to my old one & so now I can use either one of them, lol. We generally go after the bass. My grandson went to Camp Bass again this year & caught almost a 7lb small mouth. That was the icing on the cake for him. He fishes with a pole almost 8 ft long, way too long for me. I don't think I could get one that size in the boat, lol. We catch & release.

I remember you had mentioned going back on Gabapentin, are you still taking it? It seemed to offer you some relief. Also, do you feel like your muscle relaxer is doing it's job? I forgot to ask this earlier.

We had horrible storms last night but the sun is out this morning & I am happy about that.

Hi Darla,
I have been taking Gabapentin daily. I initially went back on it because off label it is used as an anxiety med. I was hoping it would help slow me down. lol. Strange thing to say isn't it? Usually we are hurting and it takes hours to do anything. Really it isn't physically I am talking about. Its the mental game. I am so wound up I can hardly sit still. This has been my problem for the last year. I just cant stop and smell the roses!! When I try to relax and enjoy myself, I just cant do it. I jump from one thing to the next and on and on. I believe may be time to increase my dosage as it worked for a month or so. I am at a very low level now. As others have suggested seeing a psychologist -- I should pursue this as well.

Sue you sound so much like me maybe we are related. Do you have a long lost brother somewhere? It could be me. I love fishing, the beach and the sun. I started young as my grandfather used to take me all the time. Even though I like to surf fish in the ocean I use a very light tackle rod. I use a spinning reel. My rod is maybe five feet long but light weight. The part that's hard for me is casting over and over. It just makes my shoulders and neck ache after about ten minutes. I try to leave the bottom rig out in the water as long as possible before recasting.

I am really trying to do better. As we grow older its funny what is important to us. I know what I used to think was important seems really stupid to me now. The simple things in life turn out to be the most enjoyable. When you are in pain a new car or a gold watch hardly seem delightful. On the other hand just a few hours without pain are worth a whole handful of diamonds.

My best wishes and prayers are with you all.
dmo

Good morning Darla,

You are not prying at all. You or anyone can ask me anything you wish. I am supposed to wait from 3 to 6 months after my biopsy before having an mri. I was told this was so all the blood and swelling would go down thus providing a more accurate picture. I am due for PSA blood work sometime this week to see if this is rising. As my father died from this exact same thing I am of course worried as is my dr. I really am not so worried about having cancer as I am about my chronic pain. I am however worried about whatever I have to do for this cancer creating more or new pain for me now. I hope you can understand what I mean.

How are you feeling today?

I hope everyone is doing well and feeling little to no pain.
dmo

How wonderful and delightful you are Miss Darla. You make my day with your caring attitude. I am a Christian and thank God for you this day. I am sorry you suffer so with your issues also. I look for the day we no longer live like this. I know you take Gabapentin. Do the opiates you take help you with your pain? I am hoping so.

My cancer does dwell on my mind but I am not sure how much it contributes to my pain. I do have pelvic pain but its not like my spine pain. My pelvic pain seems to come and go. My spine pain stays consistent everyday. I must say I love my drs as they are so kind and caring. I would be lost without them. How is your pain today? I hope not bad at all.

Well my dear one I will say a prayer for you.
dmo

Hi Miss Sherry,

Thank you for taking the time to help. I felt really great after my surgery for the first six months. Then after that no matter what I did or how much I exercised I was still in pain. I don't know if its scar tissue or my misalignment of c4 to my new fusion or what. my neck and upper back just hurts and aches. It been two years and nothing has changed. I hope and pray you get full relief. You are quite the ambitious one going to the gym three times per week. I walk everyday and use light free weights to help me keep my strength up. My neck also catches when turning my head. That along with a sharp jolt of pain at times.

Hi dmo, it is always good to hear from you but sorry you have so much pain. Yes, the opiates are really the only pain med that makes a difference and I think it makes it easier to take the pain but it is still there. The gaba definitely helps tolerate the discomfort as well, at least for me. As do muscle relaxers. Unfortunate to have to take so much and work at feeling OK enough to keep things going but that is the way it is. Many of us were dealt a bad hand I guess but there is a lot of good as well in all of our lives. I have a radial nerve surgery Thursday so hopefully I don't post too much for a bit! Hard to rest and recover but I am going to try. Have a good day, dmo!

Thanks, dmo. I will still be on here I am sure just hopefully I don't type too much. Have a good day! Not likely to be pain free but can be a good day nonetheless.

Oceanfish:
I can apreciate that you feel “like garbage” . . . No one is here on this forum because they feel exuberant strength and vitality.

I think it is important for anyone with a health challenge to maintain an orientation that looks at what they are still able to do and what their body is doing well rather than being caught in a daily web of illness and limitations.

I have worked extensively with individuals with severe head and spinal cord injuries, injuries that have left individuals with permanent paralysis, tracheostomies, unable to roll over or sit up, dependent on caregivers for all aspects of self care.

Only you can begin to piece together a life for yourself. Maybe you could volunteer at a local elementary school or library, assisting children with reading and writing skills. Or volunteering at a local animal shelter. Or volunteering with a local Meals on Wheels program. A few hours a week. Begin to stretch yourself as a means of reclaiming a life with meaning and purpose.

I continue to encourage you to find a psychologist or social worker to work with. Talking and giving expression to your feelings. Developing cognitive tools to cope with loss of health.

Behind every person’s face is a personal story. Truth be told, almost every person faces significant hurdles and obstacles in life. How you reapond to what life throws at you is a variable that you can modify and change in your favor. Begin to take stock of what you can do as opposed to how pain limits you. Begin to take stock in all that your body is doing well and how you can leverage that to making the best of today.

We each have but this one life. There is no Second Act.

For myself, I remain committed to finding ways to make the best of a less than ideal situation. No one can do this for me. It is “work” that I have to do for myself. It is a constant work in progress. Unfortunately, there is no “Dummies Guide” to refinding well-being. No step-by-step book. But it is worth the effort and struggle to not let fragile health define me.

Tap into your inner strengths. You are stronger than you think you are.
Karen

Hi Everyone,

Its about 2am and I am up with my back screaming at me. It is so strangely quiet this time of night. Time to take a pill and try to get back to sleep. When my back hurts like this I usually take my meds and then lie down on the sofa with the tv on low. Then I turn on my heating pad and over the next hour I will drift off to sleep. My heating pad on stays on 20 minutes at the time. A nice safety feature. I hope everyone is sleeping soundly and having a good night

dmo