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(10 Posts)
OjosWorld Fri 21-Mar-14 22:36:12

Today I found out I am always going to be in pain. I just can't get my head around it and keep bursting into tears.
Anyone else have neuropathic pain?

fivecupsoftea Sat 22-Mar-14 16:25:32

So sorry to hear of your difficult diagnosis. I don't have neuropathic pain. Hopefully someone who does will come along soon. I'm reading this great book at the moment called mind over medicine, I recommend it, it might give some hope. I also have an untreatable condition but I'm hoping to get some improvement with the help of this book.

Thomasthetank Sat 22-Mar-14 16:54:33

Hiya, I've recently been diagnosed with trigeminal neuropathy, am waiting to see neurologist. Like you I'm dreading the thought of always being in pain. Hopefully someone will be along with more experience of this.xx

1966gettingold Sat 22-Mar-14 20:43:19

I have been diagnosed with puendal neuralga, I am under UCHL pain clinic where is your neuropathy? I have been having accunpucture which does seem to help, I am also going to start physio with a specialist, I am going to try and avoid the meds if possible, I go to bed with my I phone listening to relaxing nature sounds this really helps take the mind off it. Also deep breathing, etc. the thing with nerve pain is the more we get anxious about the pain the more the nerves react, I am going to go foer counselling also. It's is miserable, I am three months in now.

OjosWorld Sat 22-Mar-14 22:53:09

my pain is in ny lower back, with shooting pains down my legs. I am waiting to start physio. Acupuncture was menyioned today (by my mum). does it actually work?

1966gettingold Sun 23-Mar-14 06:26:04

It's worth a try I think it is helping it is very relaxing. I also have a mini heat pad that I lie on it is made by dreamland that has been a lifesaver, the most important thing is to try and keep active.

itsmeitscathy Sun 23-Mar-14 10:31:10


I have neuropathic pain and peripheral neuropathy, been to palliative care team who offered opiates which don't allow me to function. I then went to chronic pain team, tried a lot of drugs but finally found something that makes life bearable. There are lots of things to try so don't despair yet - push for a referral to chronic pain team. A tens machine might also help, they're very fiddly but can make a big difference!

You might also benefit from speaking to a phycologist and Physio - please know though that things can get better!

itsmeitscathy Sun 23-Mar-14 10:31:51

I also find yoga helps - it's worth a try!

Matildathecat Sun 23-Mar-14 16:00:23

OP and anyone else who is in pain, please join us on The Back Story thread. Lots of us with long term chronic pain. I have neuro pain from a nerve root injury. It's a bastard but I have kind of got my head round it.

I guess I'm nearly at the point whereby I am getting on with my new life.

It really sucks. Big hugs.

2kidsintow Sun 23-Mar-14 19:51:43

There are medications to try for neuropathy. I have trigeminal neuralgia and have been trying a few different ones, my sister has neuropathy following chemo and has been put on the same meds.

Anti epilepsy drugs interfere with the nerves that are misfiring. I've had carbamazepine and gabapentin. My sister had tried them both and is now on lyrica. She thinks it's helping.

My own pain is being mostly managed, for now, but I've read that one of the problems with TN is that it is difficult to manage it long term as lots of the medications can stop working later down the line. It's depressing to know that it won't go away and will probably always be a part of my life to some degree.

Hugs to you, OP and to anyone else who is in pain.

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