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Chronic Pain
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Posted 12/18/2019 9:25 PM (GMT -5)
I need advice guys....

I'm in pain all the time. It takes away even more of my dwindling supply of energy. I have pain meds, which take the edge off, if I don't do too much. But there's always things to do right? But increasing my meds to be 'able' to get things done doesnt seem smart long term tolerance wise.

So I put things off. And feel useless. And beat myself up. And when one starts thinking about how this is my whole life with Cerebral Palsy, well...there goes the last of my motivation.

I'm not an unhappy person, I'm not depressed beyond what my situation sometimes calls for, but I'm so physically tired...I might as well be. (If that makes any sense)

Anyway....so what do you guys do for energy? How do you push past everything, knowing that anything you do WILL be painful and continue the wicked cycle.
Posted 12/19/2019 2:28 AM (GMT -5)
Yep energy and pain, hear ya. B vitamins are good for energy production.
Water, ya body needs it, and we don't smash it enough. I task orientate, do small stuff each day. Stop being so hard on yaself, we all do it, but a saying I use now is what is done is done, regardless if finished or not. I push pass everything by breaking up the day tasks etc, like now playing me music to calm the cha o tic mind and a post or three.

We have with pain we have better days than others, I make it my realisation and no longer berate myself for my lack of intensity in getting stuff done. I recently asked for some cleaning assistance, esp after the recent carpal tunnel cut job.

Keep strong. HT
Posted 12/19/2019 2:43 PM (GMT -5)
Hi Lexi,

It would seem you have plenty to deal with being in pain all the time. I am also a chronic pain patient. I take both long acting and short acting pain meds daily. I used to beat myself up about how many pain pills I took per day. I do take the least amount possible but sometimes you just need more. I am not sure of your medical condition but I have spine issues and cancer.

I am in pain management and its the best thing I ever did. I rotate taking meds so tolerance is not to bad of an issue. As far as getting things done--I do what I can when I can and let the rest go.

I also am not a depressed person but sometimes I get down about everything. When that happens I just get back up again and keep trying. I can say one thing, without my meds I just sit on the sofa with the heating pad and never move. As my dr tells me--its all about quality of life. As for energy, I can say when I am in pain I have no energy. At least with my pain meds I can do a few things and maybe have some fun.

Let me know if I can help you. I am happy to talk with other chronic pain patients.

dmo
Posted 12/19/2019 11:18 PM (GMT -5)
I have spastic cerebral palsy which has given me post impairment syndrome. My muscles are always tight and I'm always burning extra calories just doing normal tasks because everything takes more effort.

All my joints are put under more stress and because I walk differently, my back and hips and legs can be excruciating at times. But since the problem is created by brain damage when I was born, I'm really careful with muscle relaxants and pain meds etc because I've been told I'll always need some sort of that type of 'help' to have any quality of life and I'm only 32.

It just gets really hard feeling so...inadequate I guess is maybe the word. I've worked so hard to walk and to have a normal life. Dog, boyfriend (of 11 years) my own household etc and lately I just feel like I'm never going to feel energetic enough for any of it ever again (lol).
Posted 12/19/2019 11:56 PM (GMT -5)
Oh man! So I came back to check my post and the top half disappeared! Not sure what will happen if i edit the other one but i really want to say thanks turtle and thanks ocean for responding. Just knowing I'm not alone helps a little.

I'll definitely try vitamin b supplements. I take magnesium and potassium every day as well.

All we can ever do is get up every day and keep trying, so that's what we do. I hope both of you are doing well.
Posted 12/20/2019 7:54 AM (GMT -5)
Hi Lexi,

I am so sorry you are suffering through pain at such an early age. I am much older and I guess its assumed pain would be a part of my life at this time.

You are absolutely right though, I get up each day and fight the good fight. I take my meds and try my best to keep a positive outlook going. Honestly though, sometimes it gets to be too much.

I am thankful for the all the joys of my life.

I hope both your dog and your boyfriend are supportive of your needs. I can say I have a German Shepherd and she is the most loving dog ever. More so than most people!!!!

As far as pain meds go, yes I am totally dependent on them. I take some pretty strong stuff but what is the alternative? Without my meds I would be a total vegetable. Not even wanting to get out of bed. At least with my meds I have hope. It may just be for a few hours but its something to look forward too. Less pain is always a good thing.

I will be thinking and praying for you Lexi,

dmo
Posted 12/20/2019 9:20 PM (GMT -5)
Many healing thoughts to ya all. I eat mag ws well. Am finding n -acetyl cysteine helping me cognitive side and the bi polar. Sending 💪 to all. HT.
Posted 12/31/2019 7:28 AM (GMT -5)
I have to plan my pain. If I'm doing laundry, I know the next day I'm doing nothing! Scheduling 'down time' has been helpful. That way, I can feel good about my accomplishments. Anything beyond breathing increases my pain (spine and joint issues).

Did a jigsaw puzzle (300 pieces) with my partner on Saturday...still having increased pain trying to just hold my head up! Still, the enjoyment over completing the puzzle is a good thing for me to focus on today.

I have to drive today, so I know there won't be any taking of pain medication, at least until I'm home. It's always harder to 'chase after the pain' than it is to take the meds ahead of time but not all situations allow for that.

I try to get dressed every day. Even if all I manage to get done is feed myself and the pets. I accept that sometimes, that will be my best for that day.
Posted 12/31/2019 9:40 AM (GMT -5)
Pitmom, you life sounds so much like mine. I know if I do something one day the next day will be horrible pain wise. I went for a walk yesterday, today my hips are killing me. I take pain meds daily also. It a way of life now. I take care of my dog which brings me joy. She is old and her health is failing also. We are good together. lol.

No one prepares you for a life of pain. I had no idea I would feel this way. It seems I can never take enough pain meds to feel decent anymore. I live on the heating pad. I burn through two heavy duty pads each year. I just do the best I can and leave the rest.
Posted 1/4/2020 2:57 PM (GMT -5)
I feel like the thing I keep getting stuck on, is that this has been, and will be my whole life. If I let pain dictate my actions/reactions then I've lost any sense of a "normal" life. And people like to say to me "who wants a normal life anyway??" Me. I do. Because I've never had it, not for one single second.

But at the same time, the pain and exhaustion are just...so so so bad at times. No matter what I do.
Posted 1/4/2020 9:05 PM (GMT -5)
Lexi,
I am so sorry you are feeling depressed about your life. Believe me I know how you feel. I am fighting cancer, needing another fusion and living in pain everyday. I consider this my new normal. I cant change anything so I better learn to deal with it all.

I get out of bed everyday and run for my pain meds. I sit on the heating pad for an hour or two waiting for my pain meds to kick in. Sometimes I get up, take a pain pill then jump back into bed and try to sleep for another hour or two till it takes effect.
As I am typing this my neck and shoulder are hurting so much I can hardly get through this message.

God bless
dmo
Posted 1/16/2020 2:34 AM (GMT -5)
I'm not sure depressed is the right word. I just get extremely frustrated at times. I hate not being in control of my own brain/body. But as quick as the frustrations come, they also go. I try not to let the negative thoughts be the powerful ones. I have too much going on to also deal with my own self pity. Especially because it doesnt fix anything.

I hope you all have been doing well.
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