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Old 05-18-2008, 04:50 AM   #1
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My Turn To ask for Prayers! Unrealistic Expectations and SO Sad! :(

Hi all:

It's time for me to take my own advice and ask for your prayers and support.

I've been on a posting hiatus mostly due to a terrible increase in pain since backing down to Kadian 20mg from the Avinza 30mg. I have been reading, however, and have kept up for the most part with everyone's stories and situations. I'm sorry I haven't been posting, but I just haven't been able to focus enough to post to you guys in your threads, and I wanted you all to know that.

I've been a stubborn fool, and thought that I could get used to the increased pain. I finally broke down and called my doc and asked why was I experiencing so much pain. He told me that I basically had gone through a 30% med cut when I went from the Avinza to the Kadian. I'm terrible with math and numbers, but I only know my body hurts like hell.

His advice to me was to up my BT meds (Percocet 10/325) from twice per day to 3X per day. I was crushed. I still am, because, as you all know, I've been trying to get off of all of the meds.

My problem is I think I may have hit a "pain wall". I don't know whether I'm at my "best" and if I am, it just totally sucks. I have been in a "blue period" of a couple of weeks where, I just haven't wanted to accept that this could perhaps be where my pain level is at IF I don't go back up on the meds. I don't know what to do, or where to turn. I've done a lot of soul searching, and frankly, haven't gotten a lot of results.

The really sucky part is that I get out for Summer on May 31st, and I wanted so bad to be in a much better place. GRRRRR & GAAAAH!! Why do I always put such unrealistic limitations and expectations on myself.

Please pray for me, and that I will come around to acceptance. I'm really struggling with this. I don't know why it is so hard for me. I'm at a point right now where it just pisses me off so bad!!

Gotta stop for now. Pain staying around 7-8 most days, so can't do a lot of sitting! So gotta go!! Just please keep me in your prayers. Thanks guys!!!

~!~ Becky ~!~
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Old 05-18-2008, 06:28 AM   #2
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skych HB Userskych HB User
Re: My Turn To ask for Prayers! Unrealistic Expectations and SO Sad! :(

Hey there!

Becky,

A while back I got to feeling a little better and I asked my PM if we could go down in the meds. Everyone warned me to be careful about doing so.

I really was hoping it would be a good outcome to be on the decreased meds. I to put high expectations on myself. I think it is somewhat normal to do so. The important part is what we do when we dont meet the expectations.

Acceptance of situations is a tough one! Some days I really am there and other days I want to just scream out in utter agony and defeat!
Please be kind to yourself! I know it is tough and it feels like a set back or something...but it honestly only means it is not time yet.
I too had a hard time wrapping my thoughts around that to.
You can do this thing! We all can...together. I just know for myself if I did not have this family of people who understand the Chronic Pain cycle, I would have lost my sanity by now.
Please hang in there and try not to forget that there is always Hope still out there for all of us.
(((((((((((((((hugs))))))))))))))))
God Bless
Chrissy

 
Old 05-18-2008, 07:12 AM   #3
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Re: My Turn To ask for Prayers! Unrealistic Expectations and SO Sad! :(

I am so sorry. I had hoped you were not posting because you were doing so much better and out there tearing up the roads. Sorry to hear that I was way off.

I think we all dream to be off meds and dream that one morning we will wake up and no longer need meds because there is no pain. I know I do at least. It is called HOPE.

You need to give yourself credit. Your tried to lower your meds and well it just did not work unfortunately. The best of all this it is clear that you have a wonderful pm who is standing by you and being very supportive.

As hard as you are working to get off these meds I suspect you have tried all the non-medication stuff: accupuncture, relaxation tapes, tens unit, massage therapy, pool therapy, biofeedback, etc.

You may need to face reality that it won't get any better than this at least for now. Ughhhhhh there is that acceptance word . I just want you to know that I am proud of you for giving it go. Now you have to decide whether it is time to go back up on the meds in order to be comfortable and 1/2 way enjoy the summer.

From one spinney to another, I have said a prayer for you and will continue to pray until you are feeling better my friend.

Pepper

 
Old 05-18-2008, 09:44 AM   #4
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Re: My Turn To ask for Prayers! Unrealistic Expectations and SO Sad! :(

Hey Becky, I'm so sorry you are going through this. I remember how it feels to be in this crazy confusing limbo, of not knowing what is next. Not that I would ever want anyone to be told what I was, so many years ago, but I have to say that even though it was a total shock to me, when I was told that this was it....this was my life.....there was a sense of relief that I felt.

As much as I hated hearing that there was nothing that they could do, to "fix" me, it was the first time that I could actually say to myself, "OK, I need to make a plan."

I hope and pray that there will be an end to your pain. I hope that this is only temporary for you. But in the meantime, if the meds can help, why not let them. When and if the time comes that you no longer need them, all the better. But for now, I hate to see my friends here, suffering and struggling.

I am not trying to tell you what to do. I would never do that. It is not my place to do so. It is completely your decision. This is just my humble opinion. In any case, I'll be here with the others to give you the support and prayers that you need. Any time. Hang in there, hon. I know you'll get through this. You are so entitled to your anger. Just try not to let it get the better of you.

Sending you gentle hugs, CMP/MM (((((Becky)))))

 
Old 05-18-2008, 09:48 AM   #5
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Re: My Turn To ask for Prayers! Unrealistic Expectations and SO Sad! :(

Becky,

I am so sorry to hear you are suffering so much, both physically and emotionally. I empathize with you so much--medications have been a part of my life for over 15 years and have really wreaked havoc on my health, but without them, I'd probably be in worse shape than I am now.

I really applaud your efforts to reduce your pain medications, but, sweetie, you have to keep your pain at a manageable level. Just because you need a certain level of pain medication does not make you weak, or a bad person, etc. You've got to stop being so hard on yourself. Your health/pain does not define who you are as a person. You have wonderful gifts, which are displayed in the encouraging and informative posts you make here...helping others in so many ways! You are much loved and appreciated! Cut yourself some slack and exorcise those demons that are telling you that you must cut back meds. You have every right to do whatever is necessary to get your pain under control. Then, figure out what your body is capable of doing and find something that you enjoy. It will be all right!

I am praying for you and hope that you can quickly get to a better place. You definitely deserve it!

((Hugs))
TexMom

 
Old 05-18-2008, 10:12 AM   #6
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forginon HB User
Re: My Turn To ask for Prayers! Unrealistic Expectations and SO Sad! :(

Becky,

I am so sorry for the added pain. I know how hard this is. I had such high hopes that you would be successful. You have my prayers for sure.

Now, here's some "gentle" persuasion as I call it. Please take it that way because I care for you so much and how you feel is of primary import.

I just can't understand the notion of "OK, now that I'm feeling better, let's titrate downwards and get off this stuff, or at least take less." I realize this could easily sound "hard," and unfeeling, and that's not at all my intent. I really admire your desire to take less meds. I also totally understand the struggle with the "a" word, as Diet put so well.

Nevertheless, I still find myself looking crosseyed every time this is attempted. It's usually the docs that try this cut back, but sometimes we can even be found attempting it. The reason I struggle with this is because it seems to me to directly fly in the face of sound therapy.

Let's say you're a diabetic. And let's say your daily blood sugar average is around 400. That's an awful number, considering normal is under 100. So the doc puts you on a strict diet and meds. You succeed and get the number down to, say, an average of 110. That would be wonderful. A number of months pass and now the doc approaches you and says, "well, now that we know what works, let's cut back on the meds and see how it goes." The next day you go into a diabetic coma... You get my drift. This would never happen, of course, in real life. It would be absurd. Yet, in PM, we find this being foisted on patients regularly.

Sometimes we even do it to ourselves. Some might say, "OK, I get the point, but PM is different." I say, "how so?" After using the right pain meds, the new acceptable pain level is due to one thing and one thing only, the meds. The math is cut and dried - take away the meds and the pain level skyrockets. Reduce the meds and the pain level rises accordingly. Renew the meds at previous level and the relief is back, usually.

Now, if one's condition changes, like successful surgery, it's more than logical to test the waters, so to speak. If one loses a decent amount of weight, maybe that's a good reason to give a lower dose a try, since it may contribute to less pain. If anything about the condition changes for the better, then that's a good trigger to consider titrating downward as a test. But if the pain has been relieved, and the only change has been the meds, then the notion of trying to cut back just makes my head spin around. I don't know why we do this to ourselves. And I'm not immune to similar thinking any more than the next guy/gal. Even of we cannot accept that our condition is permanent, we do need to understand that CP is a disease. It's the result of a fundamental shift in the way our body's electromechanical system responds to painful stimulus. We simply react to pain differently than others. Treating CP successfully with meds is therapeutic, and good medicine, given that failure to do so is also harmful to our bodies.

The longer CP is allowed to reign untreated, the more harm we do to our body. Once we successfully treat CP, the order of the day is to continue treatment. Just like with other incurable diseases. That's right. There is no known cure for CP. If one's neurology has been altered by CP, there's no known medical treatment to reverse the damage. Painful stimuli will always result in more discomfort for the CP patient than for those not suffering with CP. We can detox and train our bodies to once again produce endorphins, but that doesn't change the underlying disease. Renewed production of endorphins is not a cure for CP. It is a cure for the temporary state of reduced production of endorphins due to chronic use of opioids, but not CP.

Even if we refuse to believe that our pain is permanent, if we truly have CP as defined by the medical community, we need our meds.

steve

Last edited by forginon; 05-18-2008 at 10:17 AM.

 
Old 05-18-2008, 11:40 AM   #7
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Re: My Turn To ask for Prayers! Unrealistic Expectations and SO Sad! :(

Steve....You said exactly what I couldn't get out of my head and on the page. Very well put.

 
Old 05-19-2008, 06:07 PM   #8
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Re: My Turn To ask for Prayers! Unrealistic Expectations and SO Sad! :(

Dear Spinal Malady.

I'm keeping you in my prayers and thoughts. That soul searching is hard I'm finding.

I wish you less pain and I wish we didn't need to take PM. From reading the boards, the qualilty of life versus living depressed and in pain has sealed my fate. Now I hope to reconcile this.

Sending prayers.

 
Old 05-19-2008, 06:10 PM   #9
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Re: My Turn To ask for Prayers! Unrealistic Expectations and SO Sad! :(

Steve,
Excellend post. I've saved it.
Thanks.

 
Old 05-19-2008, 09:42 PM   #10
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Re: My Turn To ask for Prayers! Unrealistic Expectations and SO Sad! :(

Becky, I pray that you are doing better today. Remember we are here for you and care. (((Gentle Hugs))

 
Old 05-20-2008, 04:42 AM   #11
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Re: My Turn To ask for Prayers! Unrealistic Expectations and SO Sad! :(

Thanks to all who replied. I'm just not in a very good place right now so this will be short! I know , right, so not like me!!

Steve, I hear you loud and clear, and I will be talking with my PM next Tuesday, the 27th, as I just can't take this any more. I have hit a wall, so to speak, and will have to say, "please do something".

To everyone else, thanks for the thoughts and prayers.

Life just sucks right now. I hurt so bad, I can't for the life of me figure out if I have done something to "earn" this pain (meaning physically), or if it is from the med reduction. Either way, I'm in a funk, and hurting really bad.

I have pretty much come to the conclusion that I'm where I am with the meds, and so be it. I can't keep living like this. I'm far too intelligent, and too beautiful of a person to lay around all day, just because I won't take a pill or two that could help "capture" my pain! Damn, why do I have to be so stubborn!! Anyway, the realization has set in hard core.

Again, thanks to all who have responded. I will continue to pray for you all, and please do likewise for me. Miss chatting with y'all!

~!~ Becky ~!~
__________________
\lm/ = "I Love You" in Sign Language

12/10/04 MicroD & Hemi Lami 100% Success
09/05 Re-injured post Katrina
06-07 In Pain Mgmt. trying to deal
3/9/07 2 Level PLIF due to CES

 
Old 05-20-2008, 06:19 AM   #12
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Re: My Turn To ask for Prayers! Unrealistic Expectations and SO Sad! :(

Becky,

I know how tough this is! A while back I did the decrease on the meds and some on the boards warned me to be careful and before I knew it the pain had become unbarable and I was really kncked down from it. I eventually asked the PM if I could go back up and thats what we did.

I made it through the tough time and I hope that you will to and be back to feeling better.
The constant ups and downs gets to be old. I too am on a down right now and am working through it the best I can. I know your doing the same.

(((((((((((((((hugs)))))))))))))))))
Hang in there!!
Chrissyo

 
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