Advice on living with Epidural Fibrosis

[Helenhollis]

I am 49 and I was diagnosed with Epidual Fibrosis 8 months after surgery for slipped disc. I am trying to find out more about this condition and why it affects my physical ability. Recently I had a fall, which I seem to be more prone to, which resulted in such severe pain I had to resort to my wheelchair again. I did have a period last year when all pain symptoms reduced so much I could again go for long walks and do much of the house cleaning jobs. Another major issue I have is that I can never stand for longer than a few minutes without experiencing severe pain which then causes my muscles to tense up and I get back in pain cycle again.

I've never met anyone else with this condition and am struggling to understand or cope with it having been a very fit and active person before my accident.

[Mary-intussuception]

Hello Helen. So sorry to hear of your pain - so frustrating for you given how active and extremely fit you were.

Hadn't heard of it before. Scar tissue after surgery ?

What were you prescribed? Amytryptiline?

Looked it up. NHS choices often a good one but not found it on there yet.

However my search led me to a post on here from 3 years ago by Sweetpea - 123.

Perhaps she could help. Think there were a number of replies.

So awful to be in such terrible pain. Hope you are able to find out more and also find some relief.

I had a few Diazepam prescribed once as a muscle relaxant for extreme pain that completely immobilised me. My case was different, it was my full bowel and hernias pressing on my spine.

Would you consider asking GP for Diazepam. My GP at the time said it only becomes addictive after 7 days. They loose effect I think if taken more than two or three nights, but worth a try?

X🐥

[oiseau222]

Hi Helen - sorry for your pain.

I didn't know what epidural fibrosis was, so I looked in up on the internet.

It seems that it is more common than you think, although you may be the only person you know who has it. Sometimes it's helpful to know that you are not alone in your suffering. I hope you feel better soon.

Defiinition: The formation of scar tissue near the nerve root (also called epidural fibrosis) is a common occurrence after back surgery—so common, in fact, it is so common that it often occurs for patients with successful surgical outcomes as well as for patients with continued or recurrent leg pain and back pain.

[Helenhollis in reply to oiseau222]

thanks. it explains the sciatic pain as the nerve root is both tethered and also enlarged due to scarring with pressure from lack of disc material between vertebrae which means it gets pinched more often

it doesnt explain why standing hurts, why i get severe back pain, why i have little core muscle strength and why I am more prone to falls. im trying to work all these things out so I can live a better quality of life especially as I have grandchilren starting to enter our lives. I want to be able to pick them up, I want to be able to run around with them and go on walks etc. at present much of this is hampered by continual back pain of muscles tensing up as protective mechanism i presume. i need to know why so I can do something to counteract it and prevent it.

[oiseau222]

I don't have epidural scarring, but I do have herniated disks in my lower back and periodically suffer from excruciating sciatica. Sometimes there isn't much anyone (you or the doctors) can do. Have you tried physical therapy? Maybe the therapist can work on breaking up the scar tissue and tight muscles by massage, ultrasound and electric stimulation.

It's sad that you can't pick up your grandchildren. Have you tried sitting down and picking them up then? At least you won't strain yourself so much.

Let us know if you find something that helps you.

[jimmyp7]

Hi How are you ? I just had a MRI had one the years ago didn't show up now L5 neural root associated epidural lipomatosis and severe canal stenosis also noted .this is been going on the past three years started with disc extrusion .they wanted to do surgery but i said know but now the pain is so bad i can't walk a few feet and start getting real bad cramps were i have to sit wright away . i think its time for surgery ??

[Kellee1975]

Hi, i also have been told i have epidural fibrosis. I was told 3 years ago after my spinal surgery, the surgeon i was under wont go back in to remove it, as it will just appear again, as the time has gone on the pain is getting worse, i am unable to do all the things i used to, i have constant PAIN in my lower back as well as nerve pain down both legs, the soles of both feet are numb, yet I'm told i have to live this way??? Surley its not right to be left like this? I have asked now for second opinion to see if anything can be done, all i have received is a referral to musculoskeletal triage service, last time i went to them they had me in all positions, making the pain worse, what i want is a referral back to the surgeons who originally worked on my back, i really feel your pain, its not a pain that people should live with 😫

[Helenhollis in reply to Kellee1975]

Hi Keller.

I’m sorry to hear your pain increasing. Mine went through so,Olaf pattern. I was referred to a pain workshop to understand how our pain neuropathy works. It helped me to understand that by focusing on the pain I was actually increasing my sensitivity to it. I must admit that I found it a hard lesson to learn and initially rejected it but the more I thought about it the more sense it made. The drugs weren’t helping. I certainly didn’t want to try another nerve block injection as first was agony because my nerve was so sensitised.

2 years on from my post and I am in a much better state.

I still get days of pain. I have to plan any trips to make sure I’m not standing for long. I get days when I have less feeling in my foot than others and have to use a stick to help me. I always need assistance on steps eg handrails or people’s help when getting off transport. Etc.

It is hard to adjust but now I walk a lot more. Some days I have lower to,earn extra for walking than others but it is better.

I have learnt to adjust, to accept the limitations and in doing so I’m not fighting my own body and thinking about the pain. I have significantly less pain that only a few days a month becomes debilitating. I have a seat I use when cooking dinner on days my tolerance for standing is very low. I still struggle to open weighted doors.

The biggest change was when I stopped focusing on the pain and disability and tried to relax. Pain caused me to tense up and that very action pulled more on the ligamentsand muscles causing everything Togo into spasm around the affected area. It’s a natural response. to not do it it hard but when you try it each day it gets easier.

I was referred to a top physiotherapist who didn’t do much interms of hands on treatment but instead reassured me that

1) if I fell over I was in no greater risk of having serious back injury than any other person.

2) drugs were not going to help reduce my pain

I certainly found the first point very reassuring and freed me from anxiety about being out and about.

I do hope you can find a solution that works for you.