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-   -   Roller Coaster Ride (https://www.neurotalk.org/chronic-pain/172091-roller-coaster-ride.html)

pebblebeach2 06-23-2012 04:30 PM

Roller Coaster Ride
 
Hi all. I have been on pain meds now for about 7 or 8 months now. Originally on Oxycodone and Baclofen then switched to Hydrocodone and Tizanidine.

I was to ld to take upto 6 tablets of the hydrocodone 7.5-750 mg and 3 tablets a day of the Tizanidine 2mg tablets. The hydrocodone I was told to sort of play around with and take what I felt was needed but certainly not more then the prescribed amount. Some days I think I may have taken 2 tablets of the hydrocodone and maybe 4 at the maximum of the hydrocodone.

There are days I feel like I am on a roller coaster road. Feeling ok and in a good mood. Then without warning the pain sets in and I come crashing down because of the pain and thus goes my mood. The pain level varies as to intensity. Like this morning I was sitting for a little over an hour and thus had difficulty getting up and had to get home to take the meds and then fell asleep because of the medication. I never know how to judge my day. I don't want to just take the medication if I am feeling ok. But then if I dont I pay for it big time later on.

I feel like the ups and downs are frequent and never know when it will hit me. Guess I am just tired that it varies so widely from day to day. there is no consistency anymore.

How does everyone handle the pain when it is there everyday? How do you ever plan your days? I find I can't..

Thanks for any input. Guess I just needed some support

ginnie 06-23-2012 05:03 PM

Hi Pebble
 
I am a pain patient too. I have been on meds. for about 8 years, before and after spinal fusions, DDD, DJD, ankle trouble. Planning a day is hard. If I know I am going to be more active, I plan accordingly with my meds. I take
oxycodone, and one other. I am allow 4 per day, and never do this if I can help it. I will take one before I go to say a fairground or event of some kind, and then see how it is when I get home. On an add needed basis. There are no easy ways to deal with pain Pebble, just try to work your life in a way where you have quality of life, without being sleepy etc. It is a balancing act. I am blessed to have a good pain doctor who allows me some degree of being flexable. The ups and downs you experience can be leveled out a bit. Keep a pain journal, write down what makes the pain worse, times, duration, and any thing you can think of to help your doctor help you. I have a calander, where each day I write down pain levels and what meds I take. I do wish you all the best. ginnie

Dr. Smith 06-23-2012 06:01 PM

Hi Allan,
Quote:

Originally Posted by pebblebeach2 (Post 891244)
How does everyone handle the pain when it is there everyday?

We adapt. We do what we have to do. A lot revolves around distraction -- keeping the mind occupied and focused on things other than pain. It can be exhausting. A lot also has to do with attitude (even faked/forced). Not allowing myself to become a victim, reducing stress, setting reasonable goals and prioritizing (and when things go to pot, reassessing and reprioritizing), making sure I seek out and do things that create joy, socialize (but leave pain-talk for here or very special people who understand, because most normies don't), laugh as much as I can -- at least 20 minutes a day or 10 minutes twice a day, partake in some kind of hobby or creative outlet whenever I can, modify/accommodate as necessary, get on with life as best I can, and another important one -- forgive myself.

Everything Ginnie said too.

Something I've been doing lately that helps is always having and working on some kind of project/task. Currently I'm working on a creative writing project, but recently I've done some personal productivity projects, and thinking about what to try to tackle next. I wouldn't exactly call them "chores" though that certainly works for some... whatever works! I try to pick something fun or interesting; the more absorbed I can get, the more distracting it is from the pain, so the less difficult (I never said "easy") it is for me to handle/cope.

Quote:

How do you ever plan your days?
Pretty much all of my plans, by necessity, are tentative. Like you say, some days are ok (for me), or start ok, and I never know for sure. Some parts of that I've gotten used to; others I probably won't ever get used to. One tyhing I have been able to accept, to some extent, is that I can't do a lot of things that I used to be able to do. Some of that is from pain, and some is from normal aging (the aging is harder for me to accept and cope with than the pain sometimes, but that's me).

So I guess, again, adapt, and do what I have to do.

Sorry if it's not what you wanted to hear. I don't know that there are any easy/simple answers for painees. :o

Doc

pebblebeach2 06-24-2012 01:31 AM

I know there are no simple answers. Most times when people ask me how I am doing I say I'm fine when I'm not.

I never overdo it. but I get frustrated when I start out on a journey and I am feeling fine and within a 1/2 hour my plans are destroyed thus I turn around and go home or they are cut dramatically short. Sometimes I find if I take some medication before doing something then I am faced with the fact that I need sleep so that hampers my plans.

Sorry if I can't describe things better just frustrated.

Dr. Smith 06-24-2012 08:29 AM

We get/understand all that -- believe me. You're not alone.

Quote:

Most times when people ask me how I am doing I say I'm fine when I'm not.
Then you may be ahead of the curve (or I was slow). That's one of the "games" we play -- there are several threads on different forums about just that. Those of us who actually told people the truth found it alienates a lot of folks who either don't understand or don't really want to know, and since socializing is so important, telling that little fib is a forgivable hypocrisy (though not everyone views it that way) I can live with. That's why I save pain-talk for here, etc.

Doc

pebblebeach2 06-24-2012 10:08 AM

There are those that are the closest to me that I feel I can be totally open and honest about the way I feel physically or generally what is going on in my life. They understand me. They don't judge me. They are totally accepting of me and who I am.

It's like 2 years ago I reconnected with someone from high school. She and I really didn't know each other well but she was someone I liked. So 39 years later we reconnected. Little did I know how much we would reconnect.

While we live thousands of miles apart, we are ever so close. She has become my best of friends. If I am hurting in the middle of the night or in tears from frustration, I can e-mail her and she will understand. I can't even tell you how many e-mails there have been and phone calls. We have developed this sacred bond between us and I can tell her my pains.

But can I tell this to everyone? NO. I may at times give an honest answer to someone who is a "friend" But I find I don't reveal the inner most feelings about the pain.

Those that I can share my pain with; my concerns; my frustrations with are yes the people on the board, Karen from my past. Yes I am in therapy to deal with my frustrations as well and the clergy from my temple.

But beyond that my answers may vary from person to person and the moment depending on whether I really feel like opening up. Really opening up I save for those that I trust and love the most.

And yes telling some people the truth about if something is wrong does alienate people. so you have to learn who to talk to and who to trust your inner most feelings to. And just be grateful when you found that support group.

ginnie 06-24-2012 11:35 AM

Hi Pebble
 
You are right. We only share our pain with those that we trust. I do the same thing. I have learned very fast, on who your friends really are. It is those that stay in your corner, and offer help and encouragement when you are at your worst. Sometimes family members don't do that at all. I have a family member removed themselves from my life all together. You can't control how another feels about you. We do have friendships here Pebble. I keep coming back for the same compassion we all need. Take care of yourself. ginnie

pebblebeach2 06-24-2012 02:58 PM

Ginnie:

Thank you. For some reason I am distant from my family as well. Many issues I guess, not just my health issues.

I can't tell you how often I feel like I am screaming and no one hears the pain. The physical or the emotional pain. Oh how loud the Sounds of Silence can be.

So we find someone that we really connect with, then treasure that person. The one person from my path as I mentioned before we have reconnected at such a high level. Yes it is a two way street. I am there for her and she is there for me. It gets me through the difficult days.

You are lucky if you can count on 1 hand those people that truly are your friends. Those that are in the inner circle of your life to share yes the good days but the bad days as well.

Having that inner circle makes life somewhat easier and ever so worthwhile.

Allan

Chris1972 06-25-2012 08:12 PM

Hi Pebble

I have been on pain medication for 7 years now and it is definately a roller coaster ride.

i suffer from lower back chronic pain and thanks to a botched operation i now have a left leg that has reduced sensation and buckles without warning, i have to use 2 crutches to get about.

i find i have pushed all my family and friends away, they mean well but they can not really understand what it is like to live day by day in constant chronic pain.

i try and little victories when i can, even it its something as simple as coming on here to search for a sympathetic ear from someone going through the same thing.

i have been trying to cope on my own for some time, and i havent been doing a very good job of it to be honest.

im awaiting a SCS implant trial so there maybe some chance of me getting of the morphine, fingers crossed !!

I hope you are having a good day today, if not try for a little victory.

kind regards

Chris ( a UK limey :) )


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