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Chronic pain

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Severe nerve damage

3 replies

JamieJ93 · 06/12/2023 12:17

Hi,
I was in a coma this year in January for 8 weeks.
I tried to kill myself which initially caused to me to go into acute respiratory failure with a gcs score of THREE.
because of this I had to be proned (lay on my front for a very long time, with a tracheostomy in place)
This caused a serious brachial plexus injury which caused my nerves in my spinal cord/neck to be severed, so now I cannot use my left hand to grip, it's completely lost feeling but is so painful that often I'm withering in pain. My right hand is functional to an extent but still very numb and painful.
As I was very difficult to get an arterial line in, they put one in my femoral artery (groin), however, the staff there didn't use aseptic techniques and caused a central line blood stream infection, which then led to my leg turning gangrene, which I was very lucky to not lose my leg BUT as they performed surgical debridement, they ripped out a major nerve in my leg. (For context, they could fit an adult sized hand right on it)
By the time they caught the initial infection it was too late and sepsis set in. I then had multiple organ failure and was end stage kidney failure. By miracle, my kidneys recovered enough to come off diyalsis (however I'm now in stage 3a kidney disease)
Anyway, I survived and I'm very lucky but my leg was numb from hip to ankle. I have around 60% feeling back but as I have severe nerve damage I'm in agony all the time, constantly crying over it and just wish it would end.
I have a F2F appointment with my pain clinic consultant on Friday as I have been on morphine patch, and a range of nerve controlling pain killers.
For more context I was in a coma for the same reason in 2020 and was left with lasting nerve pain ( to which I recovered around 85%)
Would it be reasonable to perhaps bring up the possibility of having regional pain syndrome?
Sorry for the long post, I just wanted to give enough context as possible

OP posts:
Lifesapurpledream · 09/12/2023 17:21

This sounds so awful. No advice really but hopefully this bumps for you. Nerve pain is horrific - I’m told by my physio nerves can continue to repair for up to two years so there’s maybe hope for your hand. Are there any nerve drugs they haven’t tried yet (Realise the appointment has been and gone hope it was helpful)

RougeFraise · 09/12/2023 22:55

Oh love. I hope the professionals can help get you out of pain.

Doddyfan · 17/12/2023 14:53

I have BMS ( burning mouth). Also burning sensation on my back and other areas. Very difficult to live with. Gets easier around 11. I've been fighting it for over 10 years and lately it's got worse. No meds work. From around 5ish it gets much worse. Stress of how much pain I'll be in every day is killing me. Nobody seems to understand. Doctors very little help.

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