Cerebral Palsy
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Nerve damage/CRPS?

ecs90ecs90 Member Posts: 1 Listener
Hi everyone 
Hoping someone can help with the current hell I find myself living in. 
20 months ago I had my second child via c section. The spinal anaesthesia was administered incorrectly (hospital words not mine) and at 3 days postpartum I was admitted with severe burning in the right leg, no bladder function and a suspected blood clot on the spinal cord. 
Mri showed nothing and EMG/nerve conduction test showed nerves are okay. Despite this constant agonising burning pain.
Clothes and bed sheets are excruciating. 
The neurologist has concluded in his report that I have neuropathic pain, dysesthesia and affected mobility as a result of the failed spinal. 
I have tried all the first line meds pregabalin, amytriptaline, gabapentin, tramadol and morphine patches. The only thing I haven't had is duloxetine. Nothing so far has helped. 
The same pain has since spread to my right arm and the doctor doing my EMG 3 weeks ago said he believed it is CRPS as it can spread and my reaction to very gentle touch is that of being burnt or cut. 
Pain clinic today was very abrupt and more interested if I'm pursuing a legal case against the hospital. Once I mentioned the neurologist report he quickly offered duloxetine and a face to face app in a few weeks time but the general feeling I got was that he didn't believe anything because my EMG was okay. 

So...my question to you knowledgeable folk is...
Can the EMG be normal and still have CRPS (the doc doing the test implied you can)? Can someone explain the dysesthesia to me and what treatment you were offered? 
The pain clinic consultant basically told me it's gone on for too long and this is just life now. 
Do I need to find a new doctor or is this right?

Hoping someone can offer me some advice or experience in this matter. I just know I'm exhausted of living in this pain. 

Replies

  • OxonladyOxonlady Member Posts: 408 Pioneering
    Hi @ecs90, I truly sympathise.. Eerily enough, just before I read your post I said to my cousin that doctors don't understand how constant, severe pain affects the whole person, not just physically but emotionally and psychologically as well.
    Nerve pain is one of the worst pains. In the last 15 years I've had 5 operations on my spine and have suffered unbearable nerve pain from my damaged spine. Currently it's affecting my right hip and groin. None of the medications you mention have ever helped my nerve pain. 

    Having said that, everyone is different, don't give up finding something that helps you. 
    It's evident that you have some sort of nerve damage. Can you ask if there's a specialist clinic that deals specifically with CRPS? Some doctors recommend CBT to help patients deal with the effects of chronic pain. Most of all you need a doctor who understands and is supportive rather than be more interested in whether you are going to take legal action!
    I'm sorry I can't be of more assistance but at least I know how you feel. 
    Take care, wishing you all the best in finding some relief soon. 
  • janer1967janer1967 Member Posts: 11,201 Disability Gamechanger
    Hi and welcome 

    I'm sorry you are in so much pain

    Sorry I dont have any advice or words of wisdom just wanted to say hi 

    We are always here to try and help and support 
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