scamp

[jimbrophy]

Jim Brophy

I am 76 suffering with arachnoiditis over 40 years Ion would like to hear if there is someone can help

[sassy59]

Hello jimbrophy, that sounds really painful. Are doctors doing anything for you? I hope things can improve and do stay in touch. Xxxxx

[MAS_Nurse]

Hi Jim,

Welcome to our community. You will find folks here are very supportive and empathic. Your question is very specific, and I must admit even as a nurse, I had not heard of arachnoiditis before. So I’ve just done a quick web search, and you may find these websites useful. I cannot endorse them, as I know nothing about them, and one of them seems to be a private clinic, so not on NHS! But the information about your condition, possible causes, symptoms etc., you may find resonance with your own story within their descriptions. There is nothing on the NHS website nor The British Pain Society website specifically about arachnoiditis. There is guidance for chronic pain management, NHS Pain Management Programmes which should be available in your area, but nothing specifically addressing your condition. It must be very frustrating for you having struggled with this for 40 years, and not finding satisfactory relief. I hope the web links will give you some information that you can print off and take to your GP or specialist pain team to discuss your options and way forward.

The Spinal Foundation: spinalfoundation.org/condit...

Arachnoiditis UK arachnoiditis.co.uk/index.php

The British Pain Society:

1.) People in pain: britishpainsociety.org/peop...

2.) Patient publications: britishpainsociety.org/brit...

In the meantime, do keep in touch with us and let us know how you are doing.

Best wishes,

MAS Nurse and Moderator

[jimbrophy in reply to MAS_Nurse]

nice to get your email going to a bad time pain baffled at how everything got so bad so quick .i dont think you know it all one of my big problem is to get ny mobile scooter going

i get very tired i find it hard to put things in priht sorry

[Hidden]

Hi Jimbrophy, Good to make your aquaintance. I had to look up your condition, not being at all familiar with it, and I must say it sounds very challenging and it's probably quite difficult to find others who are suffering the same thing. But I see that MAS_Nurse has suggested some sites where you might get help and support, and I hope those will be of some use to you.

Meantime, even if we can't be of any practical help, I'm sure the care group will welcome your posts here if you'd like to stay in touch and let us know how you are getting on. With very best wishes.

[jimbrophy in reply to Hidden]

Thanks for reply sorry for not getting back earlier it a long story it is a rear disease very painful morphine 100 twice a day plus a few other strong pain killers help.

I wish i could type a bit better and i would be able to tell you my story because i think it a story you would like to hear it a man made disease if there is a phone no i could ring

have a few more conditions like bladder cancer i have to use a mobility scooter you get so tired it has taken me 45 mins just to type this would like to keep in touch

[Uzula]

I`m sorry you are suffering Jim, I actually have heard of this condition and I remember seeing a television programme about it some years ago. I sincerely hope you find someone that can help and advise you how to get relief from your pain. Best Wishes.Xx