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Nothing more they can do...

Well, my pain management doctor was brutally honest with me at my appt this week. He said, "You've had 2 neck surgeries, multiple ESI's, nerve blocks, RFA's (or RFL's), physical therapy, etc, with no pain relief. It looks like you will be on pain medication for the rest of your life."
I had often wondered if I ever was going to wake up one day pain-free & this pretty much confirms the answer. NO. I hate taking medication, but I hate being in pain even more. At least he was honest with me.
Junipurrwind

ACDF C5-C6 01/2002
ACDF C6-C7 12/2011
Prognosis: Permanent nerve damage in hands/arms, all treatment options exhausted-- lifetime CPP
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Comments

  • Many of us have heard those words too and can remember their sting/mixed with relief at finally knowing it was as good as it was going to get....but the reality is , since I heard those words some 7 years ago and while pain medication will also always be part of my life, I have been able to go up and down in dosages at various times , and while a life on pain meds is not the option that we would choose if we could, doesn't mean that it is all that bad either. You will get to a point where you can manage to live with a certain amount of pain that your body and mind can adjust to, learn to cope with, and keep the meds for those times when it rises above that level.
    Our bodies will continue to make adjustments, and will guide us on this journey we are on, and we will adapt, and the meds are just one small part of learning to live with our new normals.......
  • Sorry you got that news today. It is tough to swallow, but at least you know where you stand and don't have to wonder and wait. I was told similiar news, cried for a bit, then bucked up and decided to be grateful pain medication exists and I don't have to live life in horrible pain. Sometimes it is difficult but I always try to find the positive in the pile of cow feces.
    Candace
    DDD & spinal stenosis L4-S1 since 2001
    30+ injections, PT, massage therapy, accupuncture, TENS unit, meds, etc but no surgical intervention
    I am not a surgical candidate
  • I heard the same thing recently, nearly sent me over the edge. I am pursuing other options, other Drs, pain psych help, PT/ massage, nutritional help, aromatherapy. I have to try to improve my quality of life any way I can, or the desperation and hopelessness will get the best of me. I take pills and just would be happy to take less, so I am not so tired. Wishing the best for you.
  • I am so sorry to hear the news you got today, I think it is natural when living with chronic pain to think there must be something they can do. It kinda bursts our bubble to hear "well there is nothing more we can do for you". I hope you have got over the initial shock and can find a way forward.
    Kirsty
  • junipurrwindjjunipurrwind Posts: 53
    edited 10/03/2013 - 8:04 AM
    Thanks for the kind words everyone. It is nice to know I am not alone.

    Sandi, it's encouraging to hear you say that your medication dosages go down sometimes. I have been fighting this chronic pain for several years & not once have I been able to take LESS medicine than before. Perhaps I will get there someday!

    Candace, a positive outlook is crucial, isn't it!! I like that. Occasionally I get caught up in feeling sorry for myself & I get depressed, but what good does that do??
    I am very grateful for pain medication, but I hate the stigma attached to it. I don't want people thinking I'm weak, a drug addict, etc. A lot of people actually think that about me & they just don't understand. Pain medication gets nothing but bad press these days. I had a long discussion with my parents about this not too long ago. They don't understand why I have to take so much medication. They are just worried about me is all.

    necksoup, I would like to pursue some of those other temporary options that you mentioned, but my problem is I just don't have the finances. My husband lost a great paying job a few months ago because his heart is failing (only at 30%) so this is quite an adjustment!! Our doctor bills keep piling up. I barely have the money to pay for my medication every month, & that is WITH health insurance. I am looking into prescription assistance programs.

    If anyone has advice for me, I will surely take it. Hearing about other people's experiences really helps. Keep them coming! Thanks again!
    Junipurrwind

    ACDF C5-C6 01/2002
    ACDF C6-C7 12/2011
    Prognosis: Permanent nerve damage in hands/arms, all treatment options exhausted-- lifetime CPP
  • A lot of my info comes from the internet, but then I check out books from the library to find more info, especially on eating a diet that causes less inflammation. I know that is important because I ate at an Indian buffet that used MSG and had a bad reaction, swell up and hurt bad.
    Another thing that I use that doesn't cost a lot but I find it works it a arthritis alcohol rub they have at the dollar stores. It has camphor, menthol, capsaicin and rubbing alcohol. I rub it on after a shower in the am, and at night. It dulls the pain & I can't believe it works at well as it does.
    With me, it is adding up all the little things just to try to have a good day. I have permanent nerve damage L arm and have had an ACDF that now they are worried did not fuse because of recurring pain numbness in both arms. I am sorry you are having the stress of financial problems, that is definitely not helpful. You are in my thoughts.
  • I'll tell you what I have done over the years, I periodically go to my doctor and talk about wanting to try to reduce my dosage of a medication.......they know me well enough to know that if I say that I need to go back up, then I really do, and it is not for any other reason other than the pain levels so they allow me to 'experiment' with the dosages a bit from time to time.This last time ( a few months ago) I was on 150 mcg. of fentanyl per hour and I wanted to see if I could reduce the dosage by even a little bit......so we were supposed to cut the dose by 25 mcg and see how I did, but for some reason , mistake on the doctors part, when he wrote the dosage change, he wrote the 100 mcg patches and forgot the 25 mcg ones, so I filled it and figured oh well let's see what happens.....so I did. It was fine, no withdrawal symptoms and I barely noticed any change in pain relief....so after a month, I went back and wanted to reduce again, and we did, since I handled the reduction of 50 mcg so well the first time, I opted to go with another 50 mcg reduction and did exactly as I did the first time. Put on the new patch and waited to see how I would do........while the pain increased a bit for a few days, no withdrawal symptoms and honestly the escalation in pain was not nearly what I expected considering that I dropped 100 mcg of fentanyl in a short time..
    I had my breakthrough meds in the event that I really needed them but tried very hard not to use them......and didn't. I did rely on ice, heat, hot showers for the muscle tension, but it really wasn't much more than what I normally experience and since I am on two muscle relaxers , those also played a part in dealing with that.
    My doctor and I both were surprised at how well I did with the med reduction and so far, some months later, I am still at the 50 mcg dose patches, which also eased some of the opiate induced problems that come with taking these type of meds long term.
    I am still getting decent pain relief, but feel better mentally and less drained than I did at the higher doses. I still have the use of breakthrough meds if I need them but I seldom use them, and try all of the other modalities first, before I reach for that bottle....
    We both know that the meds aren't going to disappear from my life completely, but ideally I would love to get to a point where I can manage with the occassional use of pain meds when I absolutely need them and not have to rely on long acting ones but for now, it is what it is, but it won't stop me from trying to reduce it again , maybe in the spring when the weather is warmer ........it is a goal to shoot for.
    Part of it I think is realizing that no amount of meds is ever going to make all of the pain go away, and knowing what the bottom line is as far as what amount of pain you can handle on your own, without the meds......the body does adjust fairly quickly as your own endorphins help to ease the pain somewhat, and then sticking to within those limits of activity that we all have, or at least knowing how far you can push past them.......making adaptations to how and when we do things, all help in learning to live with chronic pain and being able to manage the amount of meds we take to help manage it...
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