I'm in a pretty bad way at the moment. The PN I have seems largely treatment resistant and there are no more meds to try that are available in my country, NZ. I'm being discharged from the pain clinic where I've had phone contact with a pain specialist for 10 months. My own Region has no pain specialist and a completely useless rehab ward. Treatment for pain here is very conservative. There seems to be excessive concern about medication and possible difficulties while ignoring the reality that to live in constant searing pain may not be too conducive to me wanting to continue.

I've worked so hard in multiple ways to manage my illness but have become exhausted to the point I struggle to bother. When I became ill in 2013 I lost the ability to drive, walk or work within 6 weeks. I developed a neurological condition at the same time. Similar to MS. Nothing showed up in tests, MRI, etc so the Neurology dept refuse to see me. They tested me extensively in 2013 and I'm grateful for that but they have now dismissed me and I think believe my symptoms are psychological.

I have steadily declined from the start and now have muscle wastage in my right leg and I suspect atrophy in my hands and feet. The pain is constant and very extreme. My life is on the edge of crisis daily. I don't know how to change things. I feel like my life ended in 2013 when I was 45. Most of the important things have gone and there is no pleasure or meaning in my life. And I don't know what to do. I've run out of puff and haven't got anything more to give to this.

I'm so sorry and wish I knew how to help you.

I'm in the US so I'm pretty useless as far as medication advise.

Can they re-run tests now ? It's been 2 years since the others. Maybe something will show up now that they can treat you for.

Prayers for you dear indigo and a soft hug.

Debi from Georgia

Hi Indigo,

I'm so sorry to hear this and I too understand because I'm living it as well. I'm new so don't have a lot of answers however there are some excellent supportive folks here. I'm sorry I can not be of more help but want to let you know I care and understand completely.

Ciiffman

Nobody can keep up the willpower and resolve all the time, day after day, month after month. Sometimes you just run out of ammunition. we all have agreed that a good screaming cry into a pillow, giving in for a while and staying in bed to be curled up and sobbing. It helped me when I "hit bottom" to look for things to be thankful for. You might think it impossible to count your blessings when you feel there is no lower position in life but if you look around you can find much to be thankful for. I hope you can recharge a little and also remember that too much pain can drive depression also. Hopefully you have discussed your state of mind with the pain management people and they are giving you adequate meds to be able to stand your pain. If you can hang on it seems that symptoms change over time and perhaps you are due for a good change. Patience is such a hard fought virtue. Good Luck, Ken in Texas.

All I can say is that I understand how you feel. It's just not fair.

Hello,
Do you have anyone that can go to appointments with you?
I found they listened better when someone else said this was NOT psychological.
I know how frustrating it can be.
I once said, "I have never been this sick and had so few people that believed me."
I was someone prior that never was doubted.
So sorry for all your losses.

Hi. I don't have any appts to go to. I have no specialist supervision. No neurologist or pain specialist. The head neurologist has said NO to a Dr in ED in December, a psychiatrist a bit earlier last year and 3 written referrals from my GP . I can't make it happen. The only medical care I have is my monthly appt with my Dr, a GP. Last phone call with pain specialist next week, I'm too ill to travel to her, 600 km away. Then I'm on my own. I just can't handle much more.