Epidural Fibrosis

[Mohawkshygirl]

Hello! I am from upstate New York. I am wondering if anyone can relate. I have Epidural Fibrosis and I deal with pain 24/7. I would greatly appreciate any feedback.

[Hope264]

Hello, I am not exactly sure what it is but I have a very rare spinal condition myself with another condition that between them gives me pain pretty much 24/7 these days too even with all the strategies I have got together over many years. I try to take notice the times its lower and do relish these times and take notice even if its short.

I also get the attitude that if I am going to be in just as much pain on the couch I may as well go and something to distract myself. Its a tricky balance when things like walking around or driving are a challange and can cause anxieties.

What is epidural fibrosis? & what do you like doing that helps you with the pain - apart from medications which I think most of us dont enjoy being such gunia pigs and reactions are so individual I dont try and discuss mine here. Is your disease degenerative or are you stable?

[Hope264 in reply to Hope264]

Hi again,

Have you checked out Dr Sara Smith's writings on living with intractable pain from arachnoiditis? So good to read indormation from a doctor that gets it as they have lived it.

cofwa.org/arachnoiditis.htm

[Mohawkshygirl in reply to Hope264]

No I haven't read it. Where would I find this?

[Mohawkshygirl in reply to Hope264]

Hello! I am sorry to hear about your pain and what you have to deal with on the daily. Epidural Fibrosis is failed surgery and its where the scar tissue wraps itself around the nerve causing pain. Their is no cure and you can only take meds n try injections to take the edge off. It progresses over time and movement t makes it worse. I had back problems since October 2008 and it was horrible for 2 months straight. I was from the bed to the bathroom and back in bed. But over time it would be ok enough to do things but over time it got worse. So that is why I decided to try surgery. It was a less invasive surgery and well I was good for 2 months and then it hit. Pain 24/7 and I didn't know right off what was going on. I thought I would rest n take it easy n it would be better but nope it never went away. Super painful n hard to deal with. I fight depression all the time. I have my us n downs. With back pain I was limited and now with EF I am more limited then before. Its hard to deal with knowing this is what the rest of my life is going to be like at age 36 and to know it will progress. I give thanks to the creator everyday but some days its hard to deal with. I hope I answered everything haha I went off typing here.

[Hope264]

Hi, Thanks for sharing your story. It sounds similar to my situation, although in my case the surgery halted other horrid things progressing as it was CES. So I cant beat myself up wondering if I should have had it.

I have found reading about managing arachnoiditis helpful and from what I understand of it sounds like similar to what you have. I was told My nerves were stuck together too so I'm not clear if I have it or not or how I would get a diagnosis where I live given it is a regional health system. I didn't get much out of my neuro after he did the surgery but I'm still walking okay so I guess I didnt pay him to talk.

Seeing it is about managing pain & avoiding further surgery, thats pretty much where I'm at now so I don't know that I need any more diagnosis or labels. The reading I have done on arachnoiditis reflects so much of what I now live with that I do find it helpful and so nice hearing a medical person - Dr Sara Smith writing with inside understanding. One thing she writes is making a point that only difference with some terminal illness pain levels to these syndromes is that there is death coming for those. I feel sad for the brave people facing terminal illness too but it's a point.

Yes It is hard accepting limitations in your life than some more limitations years down the track. For me its easier to see glass half full because CES was making me get numb from waist down a couple of years ago & near constant pain is so much better than that.... Well hmmmm so I tell myself.

You asked where to read Sara Smith, I did send a link before but also here is a link directly to one of Sara Smith's articles she also talks about the 'epidural fibrosis' here too. There is also a very good older pain doc in a state of US that has developed protocols for living with this intractable pain of Arachnoitid type syndromes- scarring / inflammation nervy spine stuff. The joy we live with. I can't remember his name just now but will post it to you if I do. Do be careful with those injections, I thought they were a bit of a no no for complications of this type?

cofwa.org/AASYNDROME-10-03.pdf

I use the heat pads to help me get through too, what do you use ? Is your mobility effected much?

Wishing you a lower pain day 🌺

[Mohawkshygirl]

Hey there! I am so glad to hear from you. Its so nice and such a nice feeling to have someone to talk to and relate to. It is tough to go through but to not feel so alone. People always suggest stuff that have regular back pain and they don't understand everything that I am going through with the epidural fibrosis. Its not really known around here. I am the first patient my NP has heard of having this and she had to do some research in it. I am dealing with it and when I am home to much I go sit outside and get some fresh air and give thanks. It feels good to take some deep breaths and just take it all in. I am glad I can do that. I use ice pack on and off once in a while. It works sometimes. I am lucky to have my mom helping me and when it gets unbearable I ask her to rub my back to focus on that. I am on gabapentin and pain meds so that's bout all I do for it. I tried the pool to get exercise but I have had so many appointments left n right its like I never get there. I will end of this week though. So your nerves are stuck together that has to be painful. Wonder if it is the same affect like scar tissue being wrapped around the nerve?! Its hard because u would rather have feeling then to not uh. Wow!! I want to read the links u sent because it would really be nice to read up. I have to wrote up a paper because I am appealing this SSI. They denied me. Said I am capable of working n lifting up to 20lbs I am like Yeahhhhh right are they serious and crazy. They dont understand a thing. So I want them to have a paper to know what a day is like in my shoes. I want to know more about my situation and be able to write a paper to explain what exactly EF is and how it affects a person. I said I wan to make them cry. Not to be mean but it makes me cry ya know. The struggle of suffering and not having am income is not fun at all. Some days I think what do I have to look forward to? But then I remind myself that I am still here and I need to live my life to the fullest while I have the chance n I have nieces n nephews who need me. So I guess no income gets me down too. I wanna be able to support myself and be able to help out n do the little things like go to a movie or rent a movie on direct TV. Stuff like that. I dont want ppl to pity me. I just want to get my feelings out so it doesn't eat away at me. I dont want to hold it in. I was always like that, holding stuff in till one day I blow up n it all comes pouring out. That's no fun.

[Hope264]

Hi, I hear you. I have given up telling people it is a back condition or well just telling people things unless I have very good trust in them. Maybe that is why I like to use an international forum now & know there is some people out there in same boat with similar issues.

Suggestions on common back pain treatments meant well and nicely can actually be quite dismissive without people realising their kindly advice is not helpful. If I do share, with new people, which is not often these days, I either say Cauda Equina, which mostly draws a blank look including from many health professionals, or a rare nerve problem, which also fits it I guess. I am sorry to hear your having trouble with SS ? thing. I hope you can get an income too. I sent those links because, especially where arachnoitis etc can be linked with legal stuff from surgery in medical profession, so it doesn't get recognised or they say it is rare but maybe it is not so rare as thought? It took me a long time to find medical information I felt reflected my life now. CES is generally recognised (and not enough) as just a medical emergency. It was so good to read something written by a doctor suffering the actual condition .

I do have days too I cry because the pain is just out of control but it passes and I try to take notice when the pain is down too, but then comes temptation to overdo it. I just did this so have wiped myself out for a couple of days. Silly. I have good equipment that helps me look pretty normal to the outside world and thats how I like it when I go out, that is my private business. It has taken me a couple of years and I still get anxiety with leg giving way and limited time standing or sitting stuff, it adds an edge to trying to be going about your daily life.

It sounds like this is a bit newer to you in terms of level of limitations & I hope you can find good ways going forward in your life with the limitations. Its not much fun and is the very last thing I have wanted to do, but I have found the trick is to keep moving, whether mentally but mostly physically. Yes I too procrastinate about swimming because it involved driving too. Good to hear you have some support around you. I enjoy being an auntie too, even though I cant even lift a tiny baby these days. Have a good day

[Mohawkshygirl in reply to Hope264]

Sorry it has taken me so long to reply. My baby Niece has been over because her mom caught the stomach virus. So we decided to bring her here so she don't catch it. She is only 2 weeks old as of yesterday. Her 2yr old brother n mom had it. Puking n diarrhea. So my sleep is way off because I was enjoying cuddling her a s watching her. So precious n tiny. My mom does all the work. I am capable of holding her but with something propped under my arm .

Yes I am new to new limitations. I got use to limitations n when EF happened it was way more and I noticed it don't ease up no matter how much I take it easy. I could go on and on lol I know you know all about it and have more years of experience. Its hard to word some things right because we are all at different levels and not fully feeling the exact pains. Some worse but pain is pain and chronic pain. I hope one day they find a cure for this. I wouldn't want anyone to have to deal with this. Its no joke that's for sure. I think I am way off subject as to answering you lol I had very little sleep. I don't want any children with this condition. Taking care of myself is a struggle. Makes me sad to think this but its the truth. So glad I get to enjoy the baby niece for a bit. Even the i can't do everything for her. My mom has her right now. I know all about overdoing it lol I am famous for that. Get a day u feel a tiny bit better and I go krazy with it. Its hard to learn Ur lesson when u know u may not be able to have another day like that. People r surprised at how I talk so proudly about my walker. I said heyy it helps me be more independent and if it helps me a bit I am gonna use it. I call it my caddilac LOL idc what anyone thinks because they do not know a thing about me. I use to care. Long time ago. What is Ur name? My English name is Amanda.

[Hope264]

Hi I like that calling a walker a cadillac mobile. I was too funny about it to use one or a cane when things were very bad but I have eyed them on many occassions as a place to sit down. Your neice sounds cute. I understand about not having children, it was luckier for me I had good health to 25. I feel lucky But being a mum with health issues is hard yards. I do boom and bust with getting busy and wiping out too like last week. I hope your getting used to your new limitations or accepting them while your finding the ways it might improve with your body..,.

I don't like putting my name on here as its a more public forum. Please feel free to PM me if you feel like a chat or a vent 😄