Adjusting to chronic pain with spinal conditions

cherriered

Hi I'm new to the group and am having trouble coping with living in pain 24/7. It's not a new thing for me but the intensity has increased. I have two spinal conditions spinal stenosis and epidural lipomatosis as well as lymphoedema. I've been told I'm progressively deteriorating and to be prepared for full time use of my wheelchair. I suppose what I'm asking is has anyone else reached the end with pain meds and what do you do to cope? Thank you 

Alex_Alumni

Hello there @cherriered and a warm welcome to the community, thank you for reaching out and sharing a bit about yourself

To help our members share their thoughts, I've marked this post as unanswered. I don't have lived experience of very severe chronic pain, so I'm afraid I can't relate as directly as other members could.

I do feel as though I'm needing to use my wheelchair more in recent years- so I understand that it can be difficult to process at times.

Hopefully you'll have a few more replies soon, and if I can help support you with anything, please do let me know.

Alex

SueHeath

H i @cherriered welcome to this great group.
Sorry to hear about your pain management.
I have spinal stenosis, have suffered with joint problems for a number of years now. The last 2 years my condition has deteriated, not to the extent of using a wheel chair but i do have to use walking sticks more.
I know my condition doesn't help with yours but i think it's something we know is inevitable.

Hopefully you will get greeted by a few more of the group, some of us pop in and out during the day.
If you are ready to have a look around the site you may find the categories section helpful, but press on the top part of the box, you will see more threads/chats come up then.

Look forward to seeing you around 

Alex_Alumni

Hello @cherriered I know it's been a while since you first posted here on the community, but I just wanted to check in and see how things have been going since April?

If you feel there's anything we can do to help support you, even if it's just having a chat, then please do let us know  

postie15

Hi. I also have spinal epidural lipomatosis. The surgeon doesn’t want to operate and I’m waiting on an appointment for a chronic pain clinic. My days are horrendous with pain. Spoke to my GP this morning as I can barely walk today, due to an increase physical movement over the past 2 days. GP said that the medication that I have prescribed to me would only help my pain by about 30%. Personally I don’t think it helps at all. I feel totally useless and I’m am thinking about quitting my job. I’m a postman but I’ve been getting fit notes from my GP since December 2021. Feel like I am getting no answers anywhere about the pain I’m in. Sorry to hear about your conditions. 

twiggy66

Hi there.
I also have lamber spinal stenosis and rheumatism. I was diagnosed with the spinal stenosis over two years ago and rheumatism eight years ago. I know how hard it is to live your life in almost constant pain although I don't have to use a wheelchair I do however have to use two crutches as my body is deteriorating to the point where I'm practically housebound. As hard as it is just know you are not alone and have joined a group where people are going through the same thing and understand how it affects your everyday living and are here to support each other.