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Am I the only one...?

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Posted 1/27/2013 12:13 AM (GMT 0)
I have Cerebral Palsy (some of you might know that, most probably don't).

So I've been dealing with some amount of pain my entire life. Muscle pain, nerve pain, joint pain, pretty much everything you can think of.

The last 3 years have been particularly bad though (as predicted, the more my body wears itself out, the more pain I'm gonna have).

I've always been really stubborn and determined to live my life to the fullest regardless of the pain and limitations I'm forced to deal with on a daily basis.

But lately for some reason I just can't seem to get motivated and I'm finding myself "scared" of the pain. I'm in pain from the second I wake up in the morning, to the second I manage to fall asleep. I'm used to that. But now, it's like I'm scared to do anything, because I know it's going to cause even more pain than I'm already dealing with, and I feel like I just...can't handle it.

I'm on pain medication already, and it helps, but as I'm sure most of you already know, it only does so much no matter what the dose. It's never ever done much more than take the edge off for me.

I know that if I don't stay active and I don't keep up with living my life, that's not going to help anything, and will probably make things worse.

But I'm just sooooo tired of being in pain and knowing that I'll always BE in pain. I feel like I've lost that part of myself that has allowed me to push through times like this.

Am I the only one?

 

Posted 1/27/2013 12:21 AM (GMT 0)
No, I am the same way! Sometimes , actually more lately than normal I have to force myself to do things, I never want to because I know I will hurt more, and be extra tired the next day, but if I end up doing the activity I was dreading then I normally have fun and it was worth it!!
You know your body and its limitations, for me the weather plays a HUGE factor with my RA. If its freezing cold outside, or there is a huge front getting ready to come through and the isobars are packed tight and the wind is blowing like crazy I can tell you I am probably going to stay in because I am scared of the pain. But other than that I try to live life as normally as I can, I do have times where depression hits me worse because of the pain than others, but we have to keep on trying and living to the best of our abilities! :)
Posted 1/27/2013 12:51 AM (GMT 0)
The weather affects me a lot as well, rain or cold especially.

I think part of my problem is how widespread my pain is. It's in my feet, my legs, my hips, my back, everywhere. So every little thing I do hurts, and even getting dressed or taking a shower feels like a huge event.

Trying to do anything when every move is painful is just becoming more difficult. I used to have the attitude of "screw the pain I'm gonna do it anyway" but I just can't find that head space lately.

With the muscle spasms in my feet, tendonitis in my ankles (plus the joints are frozen), spasms in my legs, the dislocation of my hips (plus the inflammation), the muscle imbalances, spasms, and nerve misfires in my back, I literally just can't escape pain even sitting still.
Posted 1/27/2013 12:56 AM (GMT 0)
I am not in your same situation. But you are never the only one. If there's one thing I've learned in these 45 years on this earth, you are never the only one.

I thought I was the only one who had a tattoo like mine. I even drew it myself. Met a guy in a bar in Austin who had almost the exact same one, except I had mine done in Houston, he got his done in North Carolina. about 6 months before I had mine.

Chin up. Power on.
Posted 1/27/2013 1:14 AM (GMT 0)
As much as I hate to do it, I might talk to my Dr. about increasing the dosage of my meds a little bit. If the dose I'm on isn't doing enough so that I can even take a shower and dress myself without crying from the pain, then why even be on it at all.

It's just such a hassle to try and change things. My insurance company requires so much paperwork etc before they'll approve the meds and I hate putting my Dr. through that. And then there's the part of me that hates the meds in the first place, with the horrible side effects.

I feel like a whole healthy person trapped in the wrong, broken down body and it's so frustrating.
Posted 1/27/2013 1:40 AM (GMT 0)
Sorry you are having greater pain.:(

A few thoughts/questions..

I think I read that you are on Oxycontin and Percocet for breakthrough? Do you not have any of the Percocet to take for the higher pain levels when you get them?

What about a muscle relaxer to take or even have them call in a Medrol dose pack (steroids for the inflammation)...These type of meds work specifically for those types of pain. There are many different muscle relaxers to choose from and they work very well for the spasms.

Same thing with a nerve pain medication...are you on one?

The main reason I ask is that as you mentioned, the opiates are only meant to do so much so it's best to also rely on other types of meds for certain pains and then other modalities like daily exercise, aqua therapy/physical therapy, injections, TENS unit, ice, heat, biofeedback, acupuncture, massage, etc..

I even attended counseling for quite a few months to help better handle all the emotions that come with living with chronic pain. It helped me to adjust to a "new" normal...That pain is likely going to be with me for a long time so to be able to figure out ways to still live the best life I can with it.

It is very normal for many of us to even develop depression with our pain issues so seeking out someone to talk with as well as even get on an antidepressant if needed can really be helpful.

We all definitely understand and empathize with you.
Posted 1/27/2013 1:53 AM (GMT 0)
Living with pain is tough no doubt. However, I try to keep my mind & body busy so I don't think about the pain. Sure, we all do things we know that we will pay for the next day, I think that is human nature. I cannot imagine being afraid though as you are LexiRae. I think if I felt that way I would seriously try to get some counseling to help with this. We have to try & keep moving around as much as possible. I actually feel better the days I am active, sitting or laying around is really hard on me. One of my biggest fears is getting down & not being able to get back up, that is why I push as I do.

Take care...Susie
Posted 1/27/2013 2:33 AM (GMT 0)
I also have Flexeril and other meds for the inflammation but I can't take everything all at once usually so I have to pick and choose and try and take what I need when I need it, the whole thing just really frustrates me, I was born really early and my stomach just can't handle all the meds. So I'm on lower doses of things than I should be and just ugh.

When it was primarily my back that was the issue, I was great at handling that. I would tell myself "at least its just your back"

But since my feet, ankles, legs, AND back have gotten involved more and more it just feels like more than I can handle physically, except that I am handling it because I have to, so I sorta shut down mentally because all my effort goes to physically getting through everything.

I think a lot of the fear comes from the idea that Im 25 and its this bad, what's it going to be like in 5 years or 10.

They told my parents I probably wouldnt survive when I was born, then I wasnt supposed to roll over or sit up, or walk, and I've managed to do all that and then some, I just need a break. I'm tired of having to push through everything. I just want to enjoy life, not try and find the good through the haze of pain.
Posted 1/27/2013 10:00 AM (GMT 0)
Hi Lexi and so sorry your having a rough time. It has to be extremely difficult to be 25 and limited and in pain.

Its a thing called HOPE Lexi, you have to hold on to the hope that every new day brings, a new Doctor,pathologist,researcher,whatever working for cures and treatments. Its knowing that each and everyday one of them discovers a cure a new med or treatment. Its doing your small part to make sure those same folks get the funding and support to keep searching. Its being thankful for the volunteers that allow themsleves to become guinea pigs so that those meds and treatments can be tested to hopefully make it thru the FDA steps to be used. Its taking time to sign the back of your DL to become an organ donor and thanking those who do and their families for being brave and generous enough to donate their self to science and research as these are the folks that give you and I hope for better days in our lives.

So Lexi thats my secret to getting up another day,plodding thru another Dr or test or taking more meds,dragging myself to therapy when all I want is to pull the covers over my head and sleep forever. HOPE.

Take care and be kind to yourself.
Posted 1/27/2013 10:04 AM (GMT 0)
Oh Lexie, you are SO not the only one who feels that way! I wish I had some great 'words of wisdom' for you, but I don't. I can only tell you that you are not alone. There are times when it hits me that I will always be in some kind of pain (especially when something new crops up!) - and I start thinking that I don't have what it takes anymore to get through another day - let alone the rest of my life. I get tired of 'putting on my happy face' and acting like it's really not that bad - when in reality my spine feels like it is in a vise and/or it feels like a hot poker is boring into my gut. I have learned to allow myself 'moments', every now and then, where I'll cry, or rant and rave, or scream (while by myself of course!). Then I tell myself to shut up, dry up, and get back to doing the best I can. When I feel like I can't (or don't want) to 'do' this anymore, I try to remind myself that many have it much harder than I do. You know the old adage: "I cried because I had no shoes, until I met a man who had no feet." Is it easy? No. I just do the best that I can. And who knows, some day things might just get better - as long as I am here to wake up in the morning, anything is possible!

You are so young to have already gone through so much - but you persevere, and that is admirable. Every day you prove those baby docs wrong - good for you and keep on doing it! Of course I can't say that I know exactly what you go through, but I can totally empathize with how you feel. It can be frustrating to see other people live their lives so 'naturally' and we have to plan or 'work around' things because of our limitations, whatever they may be. Just try to be kind to yourself - and allow yourself a good cry or rant and rave, every now and then!

I sure hope this all made sense - I have a horrendous headache starting and I'm exhausted! Have a peaceful day.
Posted 1/28/2013 12:01 AM (GMT 0)
Thanks everyone for taking the time to help me feel a lot less alone.

I'm really grateful for what I do have, and for people like you guys.

And I know deep down that I do have the strength to live my life, or it wouldn't be my life. I've always tried to tell myself that we're never thrown things we weren't built to handle, even if we don't know it.

I don't know if that's actually true or not but it makes me feel better.

I just wish at times that I didn''t have to handle it all, or that I could have the chance to know what life without pain and so many limitations is like.

In a way I can't help but be envious of some of the people here- who weren't born with pain and a bunch of issues, I wonder what it's like.

But at the same time, I can't help thinking how much harder it must be. Is it better to have strength and lose it? Or to never know strength at all, so be unable to fully appreciate its existence or to understand its loss?

I always feel like I'm at odds with myself.
Posted 1/28/2013 2:55 AM (GMT 0)
Hugs Lexi, and no - you are not alone with your fear.

I'm just a little older than you (I'm 28) but I also have very widespread, progressive pain - mine due to CRPS and a variety of other problems - and those fears and doubts often creep into my mind too. I think age is a factor as you said - and for me too, the knowledge that I have a condition that is progressive/degenerative, but not terminal. When my pain is severe, or when I am really ill and in bed, I think "Gosh, I'm not even 30 yet. Where will I be at 40, 50, etc." I'm also fairly reliant on my parents as carers - and they are already in their mid 60‘s.

Hugs again - and hope today is a wee bit better for you

Laura
Posted 1/28/2013 3:04 AM (GMT 0)
Thanks!

Today has been a bit better pain wise. I've just been feeling sick most of the day from all the meds. I've got a UTI so I had to start antibiotics and that in combo with the pain meds has made me soooooo nauseaous even with the promethazine.
Posted 1/28/2013 3:10 AM (GMT 0)
Lexi I can so relate to your feelings even though our cp is a different source. I fight depression and often limit what i do to avoid the flares because i have to work to support my family. I am often scared about the future and i wonder what the next give years will bring me.please take career and know we do understand and i wish i had motivating words sorry i don't but one thing that works for me when i Ann feeling particularly down is to really focus on the positive things in life sometimes even writing it down and keeping it in my purse so i can look at it when needed helps me.
Posted 1/28/2013 3:26 AM (GMT 0)
dear lexi...uti's can make you more down in the dumps and depressed. this will pass with the antibiotics treatment. i have pain like yours and i find that i cant push hard 100% of the time.. when i need a break from pain i slow down every movement. if i need to raise an arm or leg i do it inch by inch and i find a pathway thats not too painfull. go slow for a while. when you are ready to fight again do it but this is a time for barely moving....pal pete
Posted 1/28/2013 5:16 AM (GMT 0)
I have had chronic pain for 15+ years. Chronic pain saps the life out of me. It took energy to adapt and live the new life that the chronic pain forced me to live. I became a new person that was defined by my pain.
Even when I found a way to live my new life, something always happened that disrupted the equilibrium that I achieved (a new illness, worsening of existing symptoms, a family crisis, etc.). This meant I had to find ways to live yet another new life.
When I think of what my life was like before I ended up in chronic pain, like the things I was able to do before, and then consider the toll my pain has taken not only on me, but my family, it makes me sad and angry at the same time. I think that in a way, I am grieving for the old "me" that I once was. I think we are all grieving in some way, whether it's for the loss of what we once had, or what we never had. But somehow, we find the strength to go on...

Take care of yourself

Post Edited (1 day at a time) : 1/27/2013 10:25:21 PM (GMT-7)

Posted 1/28/2013 6:57 AM (GMT 0)

LexiRae said...
Thanks!

Today has been a bit better pain wise. I've just been feeling sick most of the day from all the meds. I've got a UTI so I had to start antibiotics and that in combo with the pain meds has made me soooooo nauseaous even with the promethazine.

Well, LexiRae there are so many well wishers of yours so no worries we all are here for any kinda motivational attitude you seek for. Just continue with your medication and praying for your wellness. You will soon be relieved from the pain I wish for.
Posted 1/28/2013 10:23 AM (GMT 0)
Lexi - I have a vague recollection of asking you this when you joined, but can't remember your answer - do you have, or might you be a candidate for intrathecal baclofen? My muscular issues are different to yours - I have dystonia - but I have a pump implanted with baclofen and morphine. I have attacks that twist my limbs into stupid positions, also rolling, tearing muscle spasms. The ITB has almost stopped those tearing spasms, even though quite high doses of oral muscle relaxer didn't help
Posted 1/28/2013 6:27 PM (GMT 0)
I might be, my Dr. hasn't mentioned it to me yet- I don't know if she doesn't think I'm at that point, or if she's waiting for me to suggest it.

We sort of have an understanding that I'll tell her when things need to be adjusted, and she'll help find the right amount of adjustment, if that makes sense.

What's the pump like? How does it work? How does it get refilled? What are the side effects, is it something my dr could manage or would I need to find a specialist?
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