Did your fybro start after a spinal i... - Fibromyalgia Acti...

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Did your fybro start after a spinal injury/trauma?

LeviBarnes profile image
6 Replies

Please read :) Hi everyone, I have been sure for 2 years that my chronic pain was due to an epidural that went wrong, I was leaking spinal fluid after they went right through my spine & administered spinal block. I ended up having 2 epidural blood patches. Shortly after the birth my back and muscle pain started. Along with digestive problems & other symptoms.

The NHS has persistently told me it was NOT due to the epidural or spinal fluid leak & that the spinal block they administered in the wrong place would eventually be dispursed through my body. I have never been convinced! They always say its fybromyalgia.

Finally I came across a website that has made me feel less mad! Please the your time to read to make a awareness that this can happen!!!

arachnoiditis.co.uk

arachnoiditis.co.uk

Thankyou for reading I hope this helps some people :)

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LeviBarnes profile image
LeviBarnes
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Sniffer8 profile image
Sniffer8

This is very interesting. I have a condition called post traumatic syringomyelia. Basically I had a motorcycle accident over 30 years ago in which I fractured vertebrae T5-8. Ten years ago, after several years of knowing something wasn't right, an MRI diagnosed a syrinx from T3-11. My CSF doesn't drain off but instead as it constantly replenishes, it is stuck and creates a fluid filled cavity or cyst in my cord. Neurosurgeon has said my Fibro is basically due to this?

Onceagain profile image
Onceagain

Spinal fluid leak discussed here forums.phoenixrising.me/ind... hope it helps.

Loraine121 profile image
Loraine121

Hi LeviBarnes, most people who have fibromyalgia has been through some sore of trauma or viruse ,

I am convinced that after i had severe pneumonia and pleurisy is when my fibro started , on the evening that i was ill, i phoned NHS 24 or rather my friend did as I was so ill and couldnt breath, when the doctor came out the oxygen she brought with her was empty and the spare one she had the adapter didn't fit it she got my friend to call 999 as I was in trouble as I have asthma and my temperature was through the roof but I was freezing cold and would not let them take my blanket and clothes off the doctor was trying to cool me down while waving the oxygen in front of me as she couldnt put it on me .

The following day she came in to the high dependency unit to see if I was alive or dead as I was that ill .

It was not until several months later when I was never getting better and in constant pain that I thoght about whst had happened,

Since then I have often thought that i could have claimed against the doctor as she was ill equipped to deal with me and that's why she came in to see if I had made it through the night. As I had witnesses as my mum and friend was there.

But at the end of the day it is not going to make me better , it was all such a long time ago now.

But its when you read things it brings things back to you.

LeviBarnes profile image
LeviBarnes in reply to Loraine121

I'm sorry to hear you have had such a difficult time! I'm shocked that they were so unequipped. Such a big mistake on their behalf!

Its diagnoses that I am so interested in. I've been made to feel crazy for such a long time & I was always sure it was because of what happened with the epidural and the whole process afterwards. The mental strain has been tough. If this condition exists I just wish it was recognised.

Loraine121 profile image
Loraine121 in reply to LeviBarnes

Hi LeviBarnes, I was really lucky and even though it was 16 years ago, I had a good Gp and after about nine months of what i thought at the time was hurendouse pain ( not realising it got worse), I was on 8 tramadol , 8 co codamol as well as antinflamatri tablets, my gp said that he thought i should see a rheumatologist although it could take between 9 - 12 months waiting, I could handle this for that long i was hardly able to get out of bed, again luck was on my side and i had private health care through my work so my gp refered me and with in a couple of weeks i was diagnosed and between myselfand my gp researching the internet at the time there was not much but i found s good american site and they are alwsys ahead of us so through trial and error i eventually got a good combination of medication that gave me some quality of life, I was referedto a pain clinic although I didn't get much out of that but everyone is different it's the same with meds some work for others but not everyone. A lot of people only take amyatriptalin, and it works some of us take half the pharmacy. Lol .

I tried a lot of alternative treatments some helped on the day but mainly it was my bank account that suffered.

You learn more ways to cope well we have to, heat works a lot or i like massages but they are only good on the day.

You certainly have bern through the mill with everything?

The fibromyalgia action uk are a good site they will send you out booklets for yourself and family they are good for families to try and understand as thereare so many things you get with fibro and to try to explain to someone else who does not have fibro its not easy even though they say that they understand it difficult for them to . I just got a up to date booklet sent the other day as there is alwsys something new they also have a shop were you can buy pins, wrist bands, cloths and jewellery it is worth a look,

This site is brilliant very friendly and not all to serious but we understand what you are going through and can give you our experiences and a laugh , it's the best medication lol

Take care have a restful night

Loraine x

TheAuthor profile image
TheAuthor

Hi LeviBarnes

Thank you so much for such an interesting post. My Fibro developed over what I personally believe to be several years and I did not suffer any trauma that I am consciously aware of? I want to sincerely wish you all the best of luck and please take care of yourself my friend.

All my hopes and dreams for you

Ken

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