I came across this website which surprised me! My chronic pain started after a epidural that caused a spinal leak, followed by epidural blood patches. I have always been sure there was more to my condition than fybromyalgia.
I hope this is interesting or helpful in some way. 
I had never heard of this throughout my years of searching.
Discuss this with a solicitor. If you are in the UK then the clock starts ticking when you discover the reason for your problem which was caused by a medical procedure. AVMA is a charity which deals with medical negligence and may be able to provide you with advice.
Thankyou for the charity information, I have been on the website and contacted a solicitor
Will have a look at that DRs dont seem to know/care whats going on with me
I was diagnosed with aracnoiditus back in 1994 and been struggling ever since as well as a few other things.
Im sorry to hear that you have had a hard time. Are you from the UK? I'm confused how it gets diagnosed if its not recognised.
Yes, I'm in the UK. Fortunately for me I had two very forward thinking neurosurgeons after the initial botched up job from a different consultant.
Interesting site. I have been suffering from many of the symptoms since one of my lumbar discs exploded a few years ago. I had four microdiscectomies and a few facet joint injections. I've never heard of arachnoidosis. It sounds like something Dr House would diagnose 😉😆
What is interesting about the site is that the symptoms and causes cover almost any problems that could arise from spinal trauma. It's almost like it's giving a generic name for the damage to the outer coating of the nerves and the symptoms that ensue.
Much more to it than what you have read about. It is NOT a Generic Term whatsoever. It is under diagnosis is appalling, because it's usually always caused by Medical Harm. A usual or more "Generic" diagnosis after symptoms Start is - Fibromyalgia. It can only be Diagnosed with MRI Imaging. It's clear to see but it "gets hidden". Puposely. If you think you have Arachnoiditis or Adhesive Arachnoiditis don't leave the Hospital in which you have had it done until you walk out with a Disc that can be read by Doctors who will admit the causes which unfortunately are far and few between because admitting medical error puts these Doctors on a "Black List" while the rest if them protect the "white coat of silence". It is becoming an Epidemic, Arachnoiditis. It's name does not mean spiderinflammation! Our nerves intertwine somewhat in a "web" hence the name. The Pain is Intense and Intractable. It's progressive and heavy duty Pain Management is a necessity.
Yes I also thought it sounded rather generic. Did you read the article a Dr had written on the link more symptoms? Although it was rather confusing to me( I'm no medical expert) it all rang so true from my experience with the bad epidural & the treatment I have received from GPs who wont even send me for an MRI two years down the line. I have felt like they don't want to admit to it. Also the Anaesthetist who administered the epidural seemed clue less to what was going on and gave some pretty shoddy Information.
I may have to look into this condition more, I have been left very confused. And even if I have got this its not a recognised condition so I'm not sure what difference it makes! Surely Its pretty impossible to get diagnosed.
I've just read your post leviBarns. Epidural Steroid Injections are highly dangerous and are at the forefront of Medical Harm. I used to think they were the greatest thing since sliced bread......until one went wrong leaving me with the constant Intractable Pain of Arachnoiditis which has progressed (it always does) to Adhesive Arachnoiditis. I will not bother with those who do not heed advice or even research the "causes" of Arachnoiditis or worse as it is progressive in nature to Adhesive Arachnoiditis. There is no cure. If anyone does not like what I and many countless others have to go through to even get out of bed I would trule not want to see anyone try to live this life.
Just Google Arachnoiditis or Adhesive Arachnoiditis. You will find all your answers there. The causes, symptoms and the lack to diagnose because an overwhelming amount of victims who have this it's primarily caused by Medical Error and Medical Harm.
I've got Adhesive Arachnoiditis LeviBarnes after many Epidural Steroid Injections with Depo-medrol. My Spinal Nerves in my Lumbar / Sacral Spine are dried up so to speak. It's a cruel man made, medical harm condition that there is NO cure for. This is the reason it so "rare!" It is not Rare it is Hidden! I'm glad that you found the appropriate site. The Medical Professionalswill always say it's Fibromyalgia because it's the easy way out. It's been said that means they don't care, don't want to care and ultimately they don't care. They've got their money that is all they care about and the revolving door of uninformed patient come marching through and these types of Doctors can and do sleep well at night and will deny deny and deny again. It's a multi billion dollar business. This has nothing to do with Health Care. NOTHING.
It took me a week to realize that a medical procedure created not only increased pain, but incontinence and a more serious issue than I'd previously had. They hit the wrong spot. I am in the US Everything they want to do for pain is stick a needle in the spine. Not medication.
Yet I have osteoporosis and need no more needles. There aren't enough for all the places that hurt. Now I am a difficult patient because I won't use the treatment of choice for pain. That treatment of choice can cause paralysis.
Decompression of the Spine, chronic pain and Butrans Patches
Lumbar spine back pain
Shoulder and Spine Pain
I suffer with chronic pain due to a degenerative disease of my lumbar spine.
