I have a condition called Arachnoiditis which causes severe nerve pain in my back, legs and feet. I got this from having a Mylogram in 1979 where a drug called Myodil was injected into my spine. This drug the Medical Profession knew was dangerous but it was used on thousands of people all over the world. The drug was also called Pantepaque. Nothing can be done other than increased doses of painkillers. I used to be an active woman with my own business and now have been reduced to a useless member of society.

Arachnoiditis can also be caused by having epidurals and I would not advise anyone to go down that road.

8 Replies

  • Hi Letmien

    I could not believe it when I read you're post this am,

    It was like it was an answer to my back and legs problems, that sound exactly like yours .

    I also had a mylogram . Back many years ago, I remember how the horrific headache I got from it lasted over a week, the test was for damage to my cervical discs after a car crunch, I had whiplash.

    That being said I have suffered from my back and horrid loss of sensation in my legs and feet.. For a couple of years it has got a lot worse

    And radiating pain, from back down my right leg

    Have had an MRI .. And shows slight pressure on the nerves, but not enough to cause the symptoms I have.

    My surgeon is referring me to a neurologist .

    Thank you for bringing this up, as it something I like myself had no knowledge of


  • That's awful I have chronic back problems too all my discs are protruding i also have arthritis in the base of my spine I have numbness down my left side and one of the discs is pressing on the nerve they tried giving me all kinds of hardcore drugs some of them carrying the risk of excessive weight gain others were highly addictive but now the chronic pain team supports me but as you say my life has been changed some days are better than others but it's nighttime that causes me more problems lack of sleep due to the pain even though I am on sleeping tablets sorry to read you are having such an awful time x🌺

  • So sorry to hear how your suffering I also have severe back pain through to hips knees ankles etc etc but I wont go on but PLEASE you are NOT a useless member of society

  • Hi. I had spine surgery a year ago and I awoke from it with severe burning pain in the sole of my left foot. I still to this day have pain in my left foot. The pain will also be in my right foot too. I really don't have back pain and did not have back pain prior to the surgery. I had advanced stenosis at L23 and a large disk bulge at T12 L1 so the surgery was to decompress those two levels. What could explain this persistent foot pain. I don't think it's arachnoiditis. Could you elaborate on your pain symptoms and what you do to cope. Please I know how bad you feel. I was very active and healthy prior to this surgery I regret having. I constantly blame myself for not doing the right things and jumping into a surgery based on limited information and it all happened so quickly to me. I was fine and then boom. I can't believe it. We can't change our past. I feel just as bad but try to cope and find a way forward. I will never be the same. I'm only 49 male. And I can't do all the things I dreamt about. This pain dominates my life. I spend countless hours inside on the sofa. And I have been taking different pain meds and that nasty lyrica I'm trying to wean off of. That stuff is worse than oxy. I wish you and everyone other sufferer relief and justice. If not in this life then definitely the next. I never thought I would be here. But most of us probably felt or feel this way. God bless

  • I feel for every single one of you who feels pain at this moment in time❤️, sadly I too suffer with pain in my hips, lower back and ankleds.

    I never thought in a million years whilst Ineas serving in the army as a Combat Medical Technician, that I would end up on crutches and have a very limited walking ability as I have now😢

    I have achillies Tendonitis in both ankles and that is making my ankles weaker and weaker😢

  • Am so sorry . Side effects of some drugs can be so damaging. Have you tried Acupuncture ? Some say it works for pain and the treatment is wholistic.

    Good luck..Love

  • I have been diagnosed with Arachnoiditis and Failed Back Syndrome after two lumbar lamenectomies over 30 years ago. I have pain in my right hip and knee as well as my back. I also have a strange 'electrical' zapping that seems to eminate from my back and goes down my legs and throughout my whole body. I don't know if this is Restless Leg Syndrome of something related to the back. My toes and balls of my feet and numb as well. Does anyone have this combination of symptoms? After decreasing my opiate intake drastically, I take 50mg of Diclofenac and 600 mg of Gabapentin three times a day. I am going to see a neurologist to see if any further treatment is available besides the 20 mg of Oxycodone I must take alleviate this "buzzing" feeling...the only thing that works.

  • Oh my God Letmein.♡

    I've cred and cryed and cryed some more. How have you coped with the cruel pain of Arachnoiditis for so many years? I've had several Depo-Medrol Caudal Epidural Steroid Injections and I do not know what one went wrong. The first several (?) Epidurals I felt like dancing as they gave me such relief from sciatica nerve pain and herniated lumbar disc pain. I'm now in severe pain less a few hours a week and I never know when a few hours at most, of relief may be coming, or lucky enough to get some sleep which will be at best 2-3 hours at one time. The severe burning of my lower back, buttocks, left leg, and left foot, (even my private area!) the burning is so excruciating and also feel like I'm being knawed at from the inside out. I feel as if I'm literally going to lose my mind. I feel that my Pain Management Doctor (who gave me all these Epidurals) will not admit that I have Arachnoiditis as he has made it that I'm eligible for Medical Canibinoil and put a diagnosis of Fibromyalgia in order to qualify . I do not have fibro for the simple reason I do not have "11 out of 18 points" of different body parts which hurt to this degree. I was at one point (not for Arachnoiditis) up to 24 mg of hydromorphcontin twice daily, and changed to 15mg 3x daily, had a horrible new M.D. whom was just constantly degrading and insulting so I ended up (to prove a point that I'm not a street walking drug addict) weaning down to as low as 6mg three times a day. I've forgotten - with the hydromorphcontin I also had dilaudid for break through pain which never was enough to give me any relief from the horrific pain so I gave it up completely surrendered it in order to go from 9mg of the longer time released 12mg.hydromorphcontin. I have never been able to handle THC so I take a oil with very high CBD and less than 1%THC. I'm thinking my Pain Dr. and I know personally about 5 nurses use pot in whatever form to take the edge off of thier stressful jobs. Can't go to work smelling like alcohol is the reasoning ! I don't tolerate the oil based Canibinoil very well at all so I just take a small amount of what my prescription calls for or I'm stoned which compounds the pain because I get something called a body stone which is just to much to handle on top of the Arachnoiditis. This same Pain Management Physician will not increase my Hydromorphcontin even to 15 mg. 3 x daily and I'm having a insane time with the excruciating burning and nerve pain. I've lately been experiencing some paralysis in my left arm, hands, and feet which is terribley frightening. How do we managed to convince the very ones that put this upon us (although not intended) and I will place no blame, to be realistic about pain management. I'm siting inside my home alone with no family support and feel like I might as well rot to death for as I am not a contributing part of society any longer. I would scub toilets for a living if that's what it took to make an "honest living". I cannot afford the Canibinoil and can barely pay my rent. How can we find Dr.s who are willing to acknowledge Arachnoiditis and treat us accordingly? I am not asking for sympathy but surely this is something that is not being admitted from or by the very hands that caused the Arachnoiditis in the first place. The drug Depo-medrol is what was always used for "off label" Steroid Injections in my case. I'm at a loss and suicidal thaughts have entered my mind only because the pain is intolerable and the medical "Industry" will refuse to acknowledge the dangers of Depomedrol lumbar caudal epidural injections. I can no longer call it Health Care for there is no such thing as "caring" any longer. Has anyone else seen petitions to sign in their own Dr.s offices in Ontario? Has politics become so bad that Physician Salary cuts have given some Medical Professionals to go to any length to line their pockets with these five minute procedures? Perhaps they have shares in our new Medical Canibis Grow Opt's? It's a callous world, and I cry out to all who have been permanently disabled from this to speak up loud and clear. The problem is, we are helpless victims who are only be able to stop this by being supported by family and friends as we are so messed up pain wise , I can't even make myself a half decent healthy meal, it's horrific. It's 4:15 a.m. and as per usual up because pain awakens me. I've been on both Gabapentin and Lyrica for a few years and they do nothing for me. If they did help I would take it. Also Cymbalta was to no avail.

    My sincerest empathy to all who have Arachnoiditis. It's a nightmare that needs to be addressed...yesterday! In letmein case since 1979. We should not tolerate this bad behavior of Dr.s and so called Pain Specialists that will refuse to give us competant and compassionate care for our uncomprehendable (to others) excruciating pain.

    P.S. It wasn't until I accidentally stumbled upon some u-tube videos that I immediately could identify to the T , ...Arachnoiditis. With alot of hope and faith that we will be recognized and be put out of the miserable existence with appropriate doses of pain relief. Doctors, listen up! We are not drug addicts out here looking for a high. A nice "high" would to be able to get out of bed, go to work and have the same simple pleasures of life that everyone takes for granted these days, never stopping to even be pleasant to one another anymore. How unnecessarily sad.

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