New member to CP Australia, looking for support

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8 years 4 weeks ago #11918 by BIY
Hi Kim,

Welcome back. I agree with Mary; I wish docs didn't lay that on a patient up front because they are talking about taking your pain meds away without you knowing anything about the tools they are going to give you to put in their place. It will be less scary once you learn about these other tools. If you learn the tools that they teach about pacing, then you will be able to enjoy your cruise. So acceptance is not just about giving up, it's also about accepting your limitations, working with them, and then, in the long run being able to do more than you can when you go through the boom/bust cycle all the time.

Talk to your pain specialist about your fears that there is something wrong still and ask them for their medical opinion on that taking your all your previous scans etc with you. Sometimes we can think that further damage is occurring when it is instead our CP flare ups making our CP symptoms worse and more sensitised. If you tell him of your fears, then hopefully he will be able to advise you whether it is biological or, if it's your Chronic Pain Syndrome getting worse, then he will be able to advise on how pacing and reducing flare ups can help settle your system down.

Best wishes,
Fee
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8 years 2 weeks ago #12310 by Kim_Cooper
Replied by Kim_Cooper on topic New member to CP Australia, looking for support
Thanks BIY, I appreciate your message and advice!..
I hope you enjoyed Christmas and NYE..?!!..

I feel like I haven't stopped!!.. Between shopping for gifts, Christmas food, visiting family, Christmas, NYE etc.. It's been
Nonstop!!.. I feel so drained and my bones feel broken..
I just want to curl up in bed for a week and sleep..

But..

I did a foolish thing by taking my Mum with me to the pain clinic in December..
The specialist wants me to start being a little more active and start a swimming program and see a cognitive behavioural therapist etc..
It seems that all Mum heard was 'active'...
She's been on my back about being active..
We went to the shops nearly every day the week leading up to Christmas, we were there for about 2 hours each time and I was in agony!! So I would sit down for 10 minutes..
She then says 'he wants you to be active!!' I said 'not like this! In SMALL doses, little activity- as in 5 minute walks a couple of times a day..'
She insists that I rested for 5-10 mins so I did exercise and rest..
She doesn't get it.. 10 minutes of rest and 2 hours of walking is NOT right..
I need to do little amounts often..
Pace myself.. Walk for 5, rest for 5 etc.. And I should never be out for 2 hours or more, it kills me..
But she thinks I should!
We are butting heads, she seems to have heard something completely different..
But at the end of the day- its MY body, I know what it can and cannot handle.
I am the one living in pain 24/7 for the last 7 years..
I am the one who researchs it every day!!..

She just said to me she thinks we should get out today..
I honestly can't even imagine getting up to go to the toilet let alone 'go out'..
I told her NYE has really killed me and I can't, and she said 'you NEED to get out everyday and be active!'..
Arghhhh!!!..
I wish I never took her with me to the pain clinic, she Kees using it against me!
"Get up, walk, be active, move, get out, you need to go out, you need to walk, you should be able to do more than this etc.."

For NYE we stayed at a hotel, an hour away..
She doesn't realise just sitting in the car for an hour killed me..
So when we got to the hotel and I needed to rest she couldn't believe it, she was like 'what? You haven't done anything!'..
Then after resting I pushed myself to go for a walk..
We walked aggggges!!..
About 2-3 hours.. But because we sat for a drink a couple of times she couldn't understand why I was so exhausted and needed rest AGAIN.. Sitting is NOT resting for me, it hurts!!
Laying down is resting..
So walking for 2-3 hours and sitting a couple of times for 20 minutes is not resting..
She just doesn't get it..
This happened all day and night..
3 hour walk, then I needing rest (lay down) walk for 2 hours (lay down)..
Etc.. All day and night..

And now I feel like hell, it took soooo much out of me!!
I'm in agony, I'm tired, I'm weak and drained..

But she can't understand why, because I did 'rest'..

Now she thinks I need to push through it and get out today..

I just want to cry!!

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8 years 2 weeks ago #12317 by Mary
Hi Kim, see my reply in your other post.

Mary

Not every day is a good day, but there is good in every day.

"“It’s delightful when your imaginations come true, isn’t it?” ― L.M. Montgomery, Anne of Green Gables

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8 years 2 weeks ago #12365 by Raphael
Hi Kim,

WOW! After reading through your posts, I feel i don't belong on the CP Forum - i have nothing to complain about! Oh Sweetheart, if anything I can be a 'good pair of ears' for you.

Alittle about me - i too have Scoliosis and had a thoracic spinal fusion with harrington rods from T2-L1. I was painfree prior to the surgery, but was convinced by my the Surgeon that it would get worse - the pain did that for sure! I now have chronic pain in my neck, scapula, lower back and feet! So although one problem was 'corrected' they created a mulitude of others, which are currently taking over my life.

I am 36 years old. I was married, but have recently separated from my husband as i did not want to burden him with my inability to do anything, so at the age of 36, i too am living and relying on my Mum. Where would we be without our precious Mums. i agree that sometimes they don't understand or get where we are at, but they only have our best intentions at heart and all their actions and advice (good or bad) are given with love.

I can totally understand your frustration with these so called "specialists". I went through absolute agony with my Scoliosis surgery, only to be told that the pain i am currently experiencing is "all in my head" or I am exaggerating. Yesterday, i was told by a doctor that I proberly shouldn't have had the surgery as this is what has proberly caused my current pain and i should look into having the rods removed! Are they serious! Frustrating is not a strong enough word!

kim, You and you alone should know if something doesn't feel right. Don't rely on 'Specialist' who aren't co-habiting your body to tell you that everything is OK or as well as can expected when you feel it isn't. If you are uncomfortable about something - speak up - its your body and your life after all.

Although my pain is nowhere near a bad as you, I can sympathise with you in regards to your daily inactivity - bed, wake up in pain, stumble to a chair (i can't even still on the couch), medication, back to bed for a rest - BORING! Is this my life? I am having some diagnostic tests on my SI Joint next week, so i am crossing my fingers that i have a positive result, then i can begin another type of treatment.

Sweetie, I feel your frustration and if i could wave a magic wand I would for everyone. Life can be challenging and we need to play the hand we're dealt with, however crappy, the best we can. just know that we are all here for you and collectively we may be able to come up with some advice or options that may result in a better quality of life for you.

Take care and remember i am always here if you need a 'venting ear'

Raphael (Angela) :)

"You never really understand a person until you consider things from his point of view - until you climb into his skin and walk around in it."
Atticus Finch - To Kill A Mockingbird

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8 years 2 weeks ago #12371 by BIY
Hi Angela,

Just wanted to encourage you that you have as much right to be here on the CP forum as anyone else. The only reason any of us are here is because we live with pain daily and that pain has impacted our lives. From what you describe as your daily routine plus losing your marriage over CP, you well and truly belong here and deserve every bit of love and support other members can offer you.

If you go to the ' Resources' tab at the top of this forum page, and select 'Self Managing Pain' from the drop down menu, you will come to a page that has lots of downloadable booklets. I actually came across these first before I joined the forum. I had not come across others with CP before and, like you, I stumbled across many doctors who didn't understand about CP and put it all into the psychological basket. For me that was devastating because here I was, experiencing debilitating severe pain, and hearing such ignorant words...very invalidating!

The booklets were a blessing for me because I got to hear about others who were just like me. Also, the pain management program I went to educated me on central nervous system sensitization which happens to people with CP so that pain messages to the brain become faulty or amplified. This does not mean, however, that we are making the pain up and this is where doctors can latch onto a portion of the message and misinterpret it as being just a psychological problem. We also, as CP sufferers, have the added component of neuropathic pain that seems to start making its appearance once the central nervous system becomes over sensitized with CP Syndrome. My original injury was to jaw, neck and elbow, yet I now have neuropathic pain in my legs that makes it feel like someone is putting their hands inside my legs and squeezing the muscles and along with that comes constant electricity feeling and cold/burning sensation in my feet....now, no wonder some docs who don't understand about CP look at me like I'm mad....cos, at this stage, CP does not make a lot of sense! Research has only touched on the tip of the iceberg about it.

When we talk about a pain psychologist being a helpful part of a pain management program, we don't mean in regards to that we're nutty and need that kind of help; it's more to do with a psychologist teaching us tools to help turn down the amplified pain messages and there are also factors e.g. stress, which can increase those pain messages.

Anyway, to go back to the beginning, you are more than welcome here Angela. From the bit that you have shared with us CP has already had a pretty big impact on your life and I hope you can find a supportive environment here amongst people who can identify with you and offer loving support.

Hugs,
Fee

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