Neuropathyic pain condition

[Margaret02]

I have got a severe neuropathic pain that has come back severe after being dormant for a while. I am back on meds and morphine. I find there is no one to discuss similar problems with apart from the professionals you visit!

[Yas45]

Hi can I ask what condition do you have? I was diagnosed with genitofermoral neuralgia last year and I have nerve pain again with is apparently the lateral femoral nerve and I have real trouble walking. I’m using crutches now to go to work and just general movement. I have taken a bunch of painkillers but none of them seems do you the trick and I’m just stuck

[Margaret02 in reply to Yas45]

Hi

I have nerve damage in my gum after surgery to remove an impacted wisdom tooth plus the one next to it. I have seen every specialist in England to no avail. I am on a concoction of prescribed meds us morphine. Over the years the pain eased but unfortunately I am trying to get the pain under control. It's very debilitating as you know. It's difficult to find like minded people to understand and you can feel quite alone!

[Yas45 in reply to Margaret02]

I’m sorry to hear that but I can relate to your frustration and now having someone to talk to that understands. I wish that there was support groups round the country where you could meet people that are in a similar boat as you. But hopefully you will get better soon

[BadHare in reply to Margaret02]

I had problems for 10 years after wisdom teeth extraction. I wish I’d known about B12 then.

[misty14 in reply to Yas45]

Hi yas, I really feel for you having this pain as I know how severe it is. I've got femoral nerve damage , not sure if same as you but it's very painful. I get help from the Pain clinic and have Radiofrequecy injections which really do help. Just wondering if you've had similar as I too find the drugs don't give enough relief?. X

[Yas45 in reply to misty14]

I had the radiofrequency and trigger point steroid injections on my nerve but it is the other nerve causing so much pain. How long did the injections last without feeling any pain? Did you see a neurologist by any chance?

[misty14 in reply to Yas45]

Hi Yas, I'm sorry that your getting pain in another nerve as well. My previous pain Consuktant said this can easily happen with damaged/irritated nerves. My RF injections have lasted for three months pain free. I've worked up to this benefit from the pain Consuktant over years as it can for some last longer than that. I didn't see a neurologist. How long has the benefit been for you?. X

[Amkoffee]

I don't know anything about it but it sounds like you may have trigeminal neuralgia. I'm sure that there are groups on Facebook and may be something on this site. I have heard that it is extremely pain.

[Margaret02 in reply to Amkoffee]

Hi thanks for your post. Every consultant I've seen say it's not Trigeminal Neuralgia. The symptoms are very different but I am on similar medication. Yes there are forums and meetings for that condition but as I have said unfortunately my condition is different. There are not many places where you can go and talk about your condition apart from the medics that are treating you!

[Davek723 in reply to Margaret02]

Hi ,hope your a bit better today.

I have read all your posts, one thing sticks out

You seem to be looking for a specific group for your condition. I tutor for groups who have chronic pain and associated mental health conditions, and to be honest regardless of condition , severity etc everyone has a common goal looking for ways to live a better life. We use all sorts of relaxation ,distraction etc. Not all work for everyone but it's about finding what works best for you.

While we all have different pain different symptoms I dont think having a label for a condition really helps. I was 5 years searching for a label and when i finally got one ,it hit me that it made no difference to any symptoms.

Yes the unknown is scary and knowing for me is better than not knowing but it's made no difference to me. I just know i have a life time condition which will worsen , so that's what I

Deal with, using self management skills I learned firstly as a group participant and now as a tutor.

Usually with self management its alot of things that are common sense but alot of people I meet common sense is far from there mind. So meeting others similar gives a different perspective.

My advise would be to join a group for pain management , it does not work for everyone but if you attend listen ,contribute discuss etc

And keep an open positive mind then you may get the best out of it.

I live with what is described as the most painful chronic pain syndrome on the planet

I still have bad days and worse days or periods but now live with it rather than suffering from it.

I really hope this helps, been there as have most on here.

Have a great day

Dave.

[Margaret02 in reply to Davek723]

Hi Davek723

You are so right in what you say but finding a group to go to just to listen with like minded people is very difficult.

I was went to a group for Trigeminal Neuralgia which was very good but most of the people there had the same condition. As I've mentioned I have seen every Consultant in the country who can all tell me what "I have not got". It is very frustrating. Whilst TN is a horrible condition I don't have it.

MY pain is treated with a concoction of prescribed meds plus morphine. As I've mentioned it was dormant for a couple of years but came back with a vengeance.

I have a wonderful Specialist Nurse at the pain clinic who really understands what I am going through. Hopefully I will get it under control again!

[BadHare]

Try vitamin B12 injections to see if this reduces your pain, & also take folate (B9).

I’ve increased frequency of hydroxocobalamin to every 4-5 days as it seems to be helping my long-standing & newer neurological pain.