New Member - This is my story

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8 years 3 weeks ago #12148 by Raphael
New Member - This is my story was created by Raphael
Hello everyone, my name is Angela and this is my story.

I was diagnosed with Femoral Anteversion at 12 years old and had Tibial Rotational Osteotomy to both legs to” correct” it. At 15, I was diagnosed with Thoracic Scoliosis but because it caused me no pain, I did not bother at that point with surgery. However, at the age of 26 after living in denial about my Scoliosis and with much persuasion from my then Surgeon that it would definitely get worse, I reluctantly succumbed to surgery and had a thoracic spinal fusion with Harrington rods from T2-L1 including a Rib Thoracoplasty.

The surgery went really well. My Scoliosis went from 45 degrees to 11 degrees. However, 10 years down the track and I have been living with chronic back, shoulder and neck pain and stiffness. The pain got to such a point I was taking so much anti-inflammatory medication that I gave myself stomach ulcers!

This year particularly has been very difficult. I have chronic neck spasms which lasted for months, I now have a winging scapula which is consistently painful and this August my lower back decided to ‘join the party’ and recently the arches in my feet have started producing burning shooting pain – I feel like my entire body is in revolt!

I have tried everything to remedy my pain – massage, exercise, hydrotherapy, scenar therapy, acupuncture, osteo, physical therapy, pilates…the list goes on and my bank balance goes DOWN DOWN. I am sure they see me coming and think Ca-Ching!

I’m 36 and feel my life is passing me by. I have no social life, no friends, I live with my mother and just can’t see any light at the end of my dark tunnel. I recently separated from my husband, because I did not want to burden him with my constant moaning, complaining and inability to do anything. My days consist of waking in pain, enduring a day of pain, hating anyone who has a ‘life’, then off to bed usually around 7-7.30pm thinking about pain and what the next day has in store – I am just existing. It sucks! I just do not know what to do, I am at a complete loss.

I don’t want to sit here and go boo hoo poor me, but sometimes you need somewhere to vent frustration and It is great that sites like this exist as people who do not suffer from chronic pain, just don’t understand the emotional, psychological, let alone physical suffering someone with chronic pain lives with on a daily basis. I don’t know how many times I have been told that it is all in my head, from former friends, employers, doctors and even my Mother!

All I can do is dream of a day that I might be so lucky as to be painfree.
Thank you for listening (reading) 

"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 3 weeks ago #12149 by Outlast
Replied by Outlast on topic New Member - This is my story
Hi Angela. Actually my real name is Lindsay so feel free use that. Welcome to the Forum. I am a newby in the scheme of things but you will soon catch up with some very nice people. I hope you have a reasonable memory because i find it hard to remember all the different conditions. just when i thought i couldn't hear much worse in terms of complicated surgery up you pop. just how brave are you. T2-L1 impressive but not something you would want if asked.
You listed a lot of things you have tried doing. Are they under the overall guidance of a pain clinic doctor. You need to be if money allows. Believe it or not yours is a consistant story of the outcome of chronic pain. Feelings of isolation, anger,frustration and well overwhelmed. I think one of the moderators would be best placed to start you off with some advice and support. They are experienced and suffer Cp as well. They don't just keep an eye on things they actively paticipate Raphael. There is a lot of support here if you ask and some criticism if you are doing something that a member believes is not in your best interest. its not all in your head Raphael. That's just small minds at work. Welcome. Relax. Enjoy.
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8 years 3 weeks ago #12150 by BIY
Replied by BIY on topic New Member - This is my story
Welcome Angela,

You are in the right place for support, empathy, and will find that there are lots of things that, even though we have different conditions, still have a lot in common with suffering from chronic pain (CP).

The sensations of burning and shooting pain you describe in your feet sounds like neuropathic pain and you will find that this is common with a lot of us here who have developed chronic pain syndrome where the whole central nervous system becomes sensitized.

"Manage your pain" or "Explain pain" are 2 helpful books to read. Also, a pain management program is very helpful in understanding what is happening to your body with chronic pain and education about different tools to help learn to live with it.

You will also find that a lot of us have grown isolated through CP and that's why this forum is such a blessing to be able to connect with, and vent to others in similar boat...helps in not feeling so alone :)

My heart goes out to you dealing with a relationship break up on top of this too. Could it be possibly helpful for him to do the pain management education part of the program with you?

Hugs,
Fee
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8 years 3 weeks ago #12151 by Outlast
Replied by Outlast on topic New Member - This is my story
Angela. You have listed a number of supportive treatments but nothing specific for your obvious pain. You might want to read posts by people who are on certain medications or simply just come out and ask. You are allowed to boo hoo as often as you like. Those of us on Workcover do indeed vent from time to time. Feel better for having done it. Are you doing it all alone inside your own head? No pyschologist ? Angela i live an isolated life and know what depression and anxiety is like. I am lucky to be on top of most of that nasty head stuff but only because i stumbled on a good medication. When you feel comfortable ask whatever you like. Its that simple.

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8 years 3 weeks ago #12152 by grappers
Replied by grappers on topic New Member - This is my story
Hi Angela and welcome to the forum, you have listed all these therapies to help you with CP, may I ask are your being seen to by a pain management group of specialists, if not ask for a referral to a pain management department at your closest public hospital, local GP's are not qualified enough to deal with CP so you need a good team behind you. Drugs alone is not the answer to living with pain, a cognitive therapy group helps where medication fails, you learn skills for self management, like pacing, meditation, breathing and many more.

You are always welcome to log on and vent away, there are so many on this site who are in the same position living in constant pain so you are not alone, welcome again and I hope you find this group of caring people helpful in your daily struggles.

Don

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8 years 3 weeks ago #12154 by Raphael
Replied by Raphael on topic New Member - This is my story
Thank you everyone for your lovely comments - they brought me to tears thinking that there are people out there that actually give a damn about me and MY pain issues.

To answer some of your questions, no, I am not in a pain management program. Just doing it all on my own - Me, myself and I!

I know this might sound stupid, but i don't want to get caught up in the 'pain killer merry-go-around'. I would never take anything strong than codeine and even that i take sparingly. I am one of those people who wants to fix the problem not "bandaid" it, so to speak. It just find the correct diagnoses thats the problem.

I try relaxation techniques, but that is easier say than done when you are bracing a back spasm! I think the hardest thing for me is the feeling that this is all that life has to offer me and I might as well forget about all my dreams and ambitions. I have come to peace with the fact that i will never have children, but would like to have some sort of life past my lounge and bedroom!

I am trying a new therapy call Prolotherapy for my lower back next week and am also get a full postural assessment at a chiropractor. I am so out of alignment it's not funny.

Once again, thank you for you welcome and I look forward to getting to know you all over the forum.

"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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