Severe Nerve Pain And Back Pain Story

Hey,


I've posted to this forum before, asking about epidural injections about a month ago. I though I'd share my entire story as best as I can with this forum, try to get some camaraderie in this dark time.



Well, I'm not sure how much details we can give out, I skimmed the forum rules, I'll just keep names hidden but I'll mention some specific things that I think are relevant. I'll leave out some details, please ask for clarification if you're interested.



I'm 27 years old, I live in Newbridge, as you can tell from the name, in Kildare! In early 2017 I started to develop some back pain, it was on and off and it made sitting hard BUT I could always still walk, stand, exercise (weight lift, run, hike etc) without any problem. So I tried a bunch of things and worked with a physio. The biggest piece of wisdom imparted to me by her was to stay active and to never give in to the pain and specifically to continue with heavy weightlifting and running. I tried different stretches, the McKenzie Method, postural awareness, body movement mechanics, yoga, pilates, massage, acupuncture, core strengthening that went beyond pilates, standing desk, swimming etc. (this is not a complete list) all the usual stuff, some of it I still do (postural awareness, movement patterns).



Anyway, the pain never improved, I was always told to stay fuggin active and never give in to the pain. I got a bit nervous and went to a local GP and asked about an MRI since I was following physio advice, trying a lot of things and it was not improving. He was super hesitant and tried to dissuade me but I said I didn't care about the cost since it was my health. So in November I got an open MRI in the vista in Naas for the lumbar spine, lying down. It showed a bulging degenerative disc at L4L5 and the other discs were fine and the facet joints etc all good. My doctor said that the disc couldn't be the cause of the pain, that if you took an MRI of a hundred people 70 of them would have the same or worse looking. So I thought ok, and wondered what could be wrong and what was I doing wrong. I continued staying active and having a standing desk at work and even lying on the floor and it got worse.


In January of this year (2018 for any possible future readers) I developed nerve pain down the back of my leg. Looking at the nerve chart seems like it was the actual sciatic nerve being pinched. I was concerned but since I had done a bit of reading by this point, I knew there was a connection between bulging discs, back pain and sciatica. I figured they were all related. By February I started to get nerve pain in the front of both legs, a bit of light tingling on the thighs while walking. So I went to my doctor to inform him about the new onset of sciatic nerve pain in the left leg, all the way down the glute, hamstring and too the heal and also the light tingling in the thighs. He gave me some anti inflammatories and told me to try running to strengthen the back muscles. I think at this stage I was starting to get a bit concerned by the advice to keep super active and do running when dealing with nerve pain and increasing back pain. By this point I could not sit at all, ever. My tolerance was gone. I remember trying to go to see Star Wars The Last Jedi and being in agony by the end (that was in December though). By March the sciatic nerve pain down the back of the left leg was starting to get bad enough to interrupt my sleep, my left leg was beginning to feel like it was on fire.



I decided I would try a new physio for a new perspective. I was given the same old advice though. By this time I had stopped running, stopped heavy deadlifting and squatting and stopped bending or twisting much. He told me that was the wrong thing, that my spine was strong and I needed to strengthen my core (by now my core was super strong). This is the exercises he gave me: one legged deadlifts (https://i0.wp.com/peterdbaker.com/wp-content/uploads/2016/06/One-Legged-Dumbbell-Deadlift.jpg?resize=610%2C454) for serious, three sets of them, dead bugs, squats with a resistance band, squats with a yoga ball, a spinal rotation stretch, crab walks, nerve glides and possibly some more. They took 1 hr and 20 mins to complete. He told me to do them 5 times a week. He also said to keep going to the gym, keep fully active.



Well, each day I did his exercise the pain multiplied by two. My left leg felt more and more on fire each night and sleeping was becoming next to impossible. By day three I messaged him at like 3 in the morning telling him as such. He replied saying to back off from the exercise and try a reduced set in a few days. I did so. That was it. Dday. The pain completely exploded. It was the Friday before St Patrick's Day. I got no sleep that Friday night. I Had constant burning down the back of my left leg, like someone had a blowtorch to it. I couldn't do anything. Standing and walking were very tough. I remember crying looking out my window as people were walking down to the parade. Same thing Saturday night, no sleep, lots of burning, then again on Sunday. I was waiting to see my GP as I was told not to call an ambulance unless you lose control of your bladder or sensation/power in your legs.



By Monday I had had enough, I remember pacing around my room, sleep deprived and hearing my mam wake up at 6ish. I walked into the sitting room and burst out crying, telling her I couldn't take the pain anymore. We went to an out of hours doc in Naas. He basically said he couldn't do nothing for me. He gave me some codeine, paracetamol, Keral (an anti-inflammatoy) and sent me home and told me to go to my GP the next day. Well the next appointment for the GP wasn't until the Wednesday, so I had another two nights to get through and the meds did not help. Monday the 19th was the worst pain yet (with a few contenders). My left leg was on fire, it felt like someone had stuck a hot poker in my left heel and everywhere else it felt like there were fire ants crawling around, breathing fire onto my legs. My back felt like it had a knife in it.



I got to my GP on Wednesday. He prescribed tramadol, xanax and told me to drop the codeine and continue on with the Keral. Well I think the xanax helped to some degree, but the pain was incredible. Constant burning in my legs, both, down the front and the left down the back. A little bit down the back of the right. 24/7 with no position, stretch, ice, heat, medication, nothing could touch it whatsoever. I could barely stand or walk for much more than 5 minutes. It took extreme will power. My GP ordered some blood tests and a meeting with a rheumatologist. The rheumatologist determined from the blood tests and the history of the progression of the pain with the over activity (which he insinuated was my fault) and the previous MRI that it was probably disc problem. So he sent me home and ordered another MRI. The MRI showed the same thing, a bulging degenerative disc at L4L5, it was not herniated or hitting the nerves on the image. My doctor said my spine was fine and the case was closed. The rheumatologist said I might benefit from an injection but my GP advised against it and said to reduce activity, try to increase it slowly and take medication. I though Ok, sure, seems fine to me. So I spend roughly 3 months solid with no change of pain whatsoever. The medication he had me on was gabapentin 300mg, venlafaxine 75mg, paracetamol 3g and etoflam gel (we had tried a few other anti inflammatory meds but they all hurt my stomach so we had to drop them). I could not move much, all I could was a 20 minute walk each day and it was very tough. I just lay on my bed, day after day, with my legs on fire, watching tv, with legs propped up with pillows. The pain let up a little bit after three months but not by much. The severe burning in both my feet at night started to go down a little bit. But it was all too much.


I reported to my GP each month, I was trying to walk more but I wasn't getting much relief from the medication. By about 5 months I was started to suffer very badly mentally. All of the pain, all of the time, waking up in severe pain and in my room day after day and being unable to do anything besides a shower and a short walk without my back getting incredibly fatigued. At about this time I started to develop other pains in my body. My chest got very sore and my upper back too. I got light nerve pain in my arms and even my face. I had no clue if this was related to the legs and lower back, because of all the inactivity or something entirely different.


I told my doctor this and he just said he thought he did everything he could. We had an MRI and in his opinion it was fine, we did blood tests and the rheumatologist said they were fine. So he decided I should go for psychiatric counseling. It felt awful to be told this. I was in incredible physical pain, the nerve pain in my legs was so severe and constant, I could barely walk and had new onset of symptoms and my doctor's advice was to see a counselor. Well, I went and saw him, and I'd sooner light a hundred quid on fire than spend money on a psychiatrist ever again. He just belittled my pain, said he had a bad back too and nerve pain when he was my age and "he was white in the face going in to work" I pointed out it can't possibly be comparable since he was still able to go to work and I can barely stand. He ignored me. He said "you say you can't sit, then how did you drive down to castledermott from newbridge" as if he had caught me out. I said, "well I didn't, my uncle is outside in the car park, I laid in the passenger seat, full recline". He gave me a prescription for amitriptyline and said to come back in 2 weeks and tell him if it helped.


Well, by now I was getting exasperated. I was trying so hard to tell these people how severe the pain was, how disabled I was by it. I could not understand why we had stopped trying to get a diagnosis, especially with the new onset of symptoms. So I called tallaght myself and used my original referral from the rheumatologist to set up a private appointment with a pain management doctor. At this point I was desperate for relief from the nerve pain. I figured he'd be super sympathetic, jack me up on something hard until sorting me out with some diagnostics / a procedure or a referral for more scans and maybe to see a surgeon.



Well before getting to see him, I had about two nights in a row with no sleep whatsoever. All of my body was in pain, from the initial injury to the inactivity. It was hard to find any position to sleep in that wasn't sore. I had no options. My GP said no more medication changes at the last visit. The psychiatrist was behind his own timetable and a hundred quid, the pain management doctor, private consultation, was 3 weeks away (I booked it two weeks prior to this night). So I called the ambulatory service. It was 4 in the morning after two nights of no sleep already. I said to the guy on the phone, I was really sorry, I don't know if this is appropriate, but I have severe nerve pain in my legs, severe lower back pain, I can't sit at all, I can barely walk and I have had no sleep in 2 days and this is my third night without any. I can't think of anywhere else to get help, should I get an ambulance to A&E to see if they can sort me. He said absolutely, so he'd have one sent over.


Well, the paramedic and driver got to my house and were not impressed at all. I told them why I had called and immediately the head shaking and the eye rolling began. They told me I shouldn't have called. I apologised and said I can go back into my room if they don't think it's appropriate. They reluctantly took me in. I couldn't sit from pain in the lower spine, and asked would it be ok to lie on the stretcher. He was not happy about that and said "it's just a twenty minute drive". I explained how painful sitting was for me so he reluctantly put me in. Throughout the entire drive he berated me for calling "you're not having a stroke, or overdosing or having a heart attack...like, your life is not at risk... you shouldn't call for this". I just apologised, told him the man on the phone said it was ok and they could help but he said I should know better. It went around in circles, berating me and me apologising.


I finally got to the hospital, he got up and left. I unclasped myself and got up unassisted and out of the ambulance. He was standing with the driver, obviously giving out about me and said "go on in to reception". I got in and she said yea go sit down. I had a look around and there wasn't many people there. I found a spot away in the corner to lie on the floor. After about 5 minutes the paramedic, driver and nurse f the triage are having a whisper and looking over at me. I see eyes rolling etc. She comes over and says "you can't be lying on the floor, would you sit up." I said, "I can't sit at the moment it's really, really painful, my tolerance is really low. Same with standing although easier than sitting I can only go for a good 15 minutes before needing to lie down." Well, I guess since she had it set in her mind to dislike me she said "you can't be lying on the floor." again and I said "would it be ok to lie across some benches, I'll stand up if anyone else comes in and needs a seat." and she said "fine, just get up out of that." and turned around and walked away.


I was super upset by the entire thing. I want to stress, nothing I ever said was snarky or angry. I was shattered, in bit. I lay on the bench and cried for a solid hour. My mam and sister came out at some point with some food and stuff. I finally got called in to the nurse. She said to sit down, again explaining that I couldn't. (This is a constant problem with every meeting I have, bewilderment at me choosing to stand despite me being there for severe lower back pain and no sitting tolerance). At one point in our talk she said "so you're here for a bit of back pain?"
I said "No, I'm here because I have severe nerve pain in both legs and very bad back pain. I can't sleep and I saw my GP and a psychiatrist and neither of their advice helped me." She gave me some paliax and valium and sent me out to the chair with a blanket. I burst out crying on my way out and she said "ah jaysus, what are you crying for?" and I said "I'm just in so much pain... and nobody really seems to understand." and she hushed me out.


My mam was outside and I just lay across the bench sobbing. I cheered up a bit chatting to my mam and other people that were there. I went in for an x-ray and then went in to the doctor. He did the usual stuff. Stand on your toes, reflex test, push against me with your leg. Said I was grand. I said look, I can;t sleep, I'm in so much pain, can you not do anything, give me medication, send me to a specialist, request a scan or think about a disease I might have...anything. He said to wait until the pain management appointment and he'd give me some paliax until then but not sleeping medication as it's addictive and I'm too young


I really don't want to trigger anyone, so I think the next bits get a bit dark, warnings about suicidal thoughts. I'll try to keep it as clean as I can though. So the paliax took the edge off a tiny bit, it was 100mg twice a day. But it gave me insane nightmares. I took them on and off for 2 days at a time. But I couldn't hack the nightmares. They were very, very vivid and terrifying. They made me not want to sleep. So I cut them in half and went for 50 mg twice a day. The nightmares decreased a lot but pain went back to normal, but it seemed like they helped with sleep a little bit so I kept taking them. Then the amitriptyline was stopped abruptly after titrating up to 75mg. So I had withdrawal from that plus effects from the paliax being halved and in general being on and off. Plus all of the pain and chronic nature of it, stuck disabled in a house for 6 months. My mental health was going out the window. I was starting to cry a lot for most of the day and think about ways to end it if I needed to.


I got in touch with surgeons abroad who gave some good advice. Basically to try a few different scans. Do an MRI and x-ray while standing and bending forward and backward. Maybe even while sitting since that's the most painful position. Get a CT scan with dye around the disc area and try diagnostic nerve blogs and test for a few rare diseases. Also look at the upper back and neck since there was new onset of nerve pain in the arms and face, could be an issue there separate to the legs and lower back or it could e related. Sounded like a good plan.



I finally got to the pain management doctor in tallaght sometime in late September and I had my fingers crossed he'd have a similar plan. Nope. He wanted to up the dosage of gabapentin to 600mg initially. I asked about the diagnostic nerve blocks and the scans etc. He reluctantly set me up for an epidural steroid injection and said not to put my hopes in it. That I was in a chronic pain cycle and needed to get out of it with medication, rehabilitation and psychiatry. It felt so wrong, it didn't feel like treatment that was in proportion to the pain I was in. I didn't understand why we weren't at least checking a surgeon's opinion on the situation for an external point of view. I will also say this. I have heard positive things about this doctor from other patients, even here on this board. Well, i found him to be very unsympathetic, very antagonistic and I got a huge impression he did not want to treat or care for me and it was like I was wasting his time. (also he said at one point "you won't find a surgeon who will ever operate on you", well he's not wrong, all three surgeons I contacted said they would not operate on me without further testing but all three have offered options should the tests show certain things, especially since my pain is so severe and they actually believe it)



By this time I was well versed in the medical literature on back pain, nerve pain etc. I was actually doing a PhD in theoretical physics up until March so my research skills kind of transferred over and I read a lot of stuff. Not spine-health.com or wikipedia tier; I read a bunch of the most up to date reviews and reviews of reviews of medical trials and separate clinical trials and tried my best to understand them and find their biases and shortcomings. I think the most astounding things I found was that gabapentin and pregablin, (also sold under the trade name neurontin and lyrica) while they are used to treat nerve pain like diabetic neuropathy and post-herpethic neuropathy, they've never actually been trialed for lumbar radiculopathy (nerve pain cause by spinal abnormalities). BUT they've be used to treat it for 20 years. Well the only review I could find about them stated that moderate to high quality evidence suggests they are no better than placebo for lumbar radiculopathy
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6028270/pdf/190e786.pdf
here's the review for anyone interested.


Well I went back on the 1st of October to 'meet the team'. This was a physio, the pain management doc I had already met, the pain management registrar and a psychologist. Honestly, I'd just name them cause I really don't care anymore but I don't want to break any rules. Well, the physio was very nice and understanding. I thought she was gonna tell me to start doing stupid ****e like stretching, bird dogs and cat cows and whatever else. Well she seemed to understand that the pain level was very high. I told her the nerve pain was way worse than the back and the back pain is insane. Even at 6 months it's not just 'sore', like when you massage a muscle and you're like "oh yea, that's it, get that knot for me!" it's literally on fire still, so, so tender to touch and massaging it feels like massaging an open wound. So she just said to rock gently on my bed and stuff and try walk a bit more. Fair enough.



Went on to the registrar. She was also quite nice. I told her as much as I could. She did something no other doctor has done. She just pushed on my spine at each point and told me to tell her when it was sore. So I was like "no..no..no...YEA! YEA!...no...no" and she was like "hmmm, well, that was L4L5 where the pain was" and so I was like ???? thinking: ok put two and two together please. Well, himself came in the door "what's this I hear about you lying flat all day???" "you should be walking more!! you know the research says resting is bad! that's 20 year old research that is, we've known that for twenty years". (he's not wrong, it is 20 years old, and yea... the most up to date consensus is that the old reviews are incredibly poorly constructed and their sentiments are so general as to be effectively meaningless) I wasn't arsed arguing and I was miserable, and in person I do not have a strong presence, so I just said "I in all honesty am as active as I possibly can be, any more and my back feels like a literal anchor pulling me down and the nerve pain is even worse than it already is at night". Get a blank look at that. He bumps up gabapentin to 900mg and tells me i'll have an epidural injection on the 10th. He reluctantly writes a 10 days prescription for palexia 50mg twice a day. A prescription for the rest of my meds and then I meet the psychologist. It was basically her telling me to sign up for the ulysses pain rehab program. I asked her has it had much success and I did not get answer, I got mumbles about all the research showing it's the best approach for chronic pain. In fairness she was a nice person, I did like her. I told her I'd try a few things here but if it doesn't work out I'm going abroad and if that doesn't work out I've signed up for dignitas (the organisation that try help you get an assisted suicide in switzerland) because I can not live with this pain and I have no doubt in my mind that graded rehab therapy will be completely ineffective. So that was that


Went home for another ten days of no sleep and ambiguity. Then came the 10th of October. I had another breakdown in these ten days and went to Naas A&E. I couldn't sleep and tried to get admitted to lakeview hospital. I was either going to commit myself or jump in front of a train, I completely mean it. So I had another 5 hours lying on a cold bench. I was crying so badly, other people in the room were getting me tissues and a blanket, they were very kind. In fairness the team were nice and they were going to commit me, but something hit me just before going in. I knew the ultimate problem was a physical problem and not a mental one. I didn't want to be committed and have that on my medical record. I don't know if it would effect anything in the future, but I got up, asked to pay and left before being committed. So as you can see, by now I was completely mentally and physically shattered. I just held out until the 10th.


The 10th of Oct. came around and I thought I was getting what's called a transforminal epidural injection, basically they inject the steroid at the problem level (L4L5). Nope. I got a caudal epidural injection, they inject from the bottom of your sacrum and up into the epidural space and hopefully it reaches the problem area. It is the easiest and quickest epidural procedure. This REALLY pissed me off, because I only found out after the procedure AND it felt like he was just fobbing me off and giving me the quickest thing rather than really treating me as an actual patient and giving me the procedure that has the highest chance at giving me relief.



I did those checks with nurses where they said ''what are you getting?' and I was saying 'a caudal epidural injection at L4L5' which makes NO SENSE, caudal means done at the tailbone, they should have immediately red flagged! What's the point in these checks? At my bedside I got stick from the pain management doc "you seem to be putting all your hope in this but medication and rehab and staying positive are all equally as important". I was putting no hope in that procedure, I never asked for it and it made no sense to me to do a caudal epidural injection. I felt betrayed. I wasn't given a leaflet that explained my procedure, what I had done, what to expect after the operation etc. either. I was discharged with nothing. My friend drove me there and back. I will say that the nurses in tallaght were all lovely people, they were very kind and helpful. I did ask one of the kitchen porter for some more toast and she gave out to me. For god's sake, I fasted all day, went through a procedure and this is the firs thing I've ate and it's 5 o clock. Is healthcare funding this bad? Anyway, I apologised for asking and said it was no problem but a nurse sorted me out anyway and said it was absolutely no problem, I told her to please not say anything to the kitchen porter, i just want the toast, no problems! lol
Anyway, I was told to quit the palexia cold turkey and discharged without any post-procedure advice or information. WHAT



I got home anyway and I was super tired, friend made me some food and I could barely function. Yesterday was insane. Pain shot up, I could barely walk and I was also insanely anxious. I had no post procedure booklet so I had to look up the mater private's one that said there may be an increase in pain for 2-3 days following the procedure and the steroid may not kick in for 7-14 days. In fact, this was the sentiment on most hospital's pages. I also had to look up palexia (which is the drug tapentadol) withdrawal. Anxiety, pain increase, diarrhea are possible. I though, why wasn't I given a tapering schedule? Surely that's the best thing to do? I had an increase in pain yesterday and today (11th+12th of Oct), I can barely walk, leg pain has increased and nerve pain in the arms and face and I have been hysterical. I ordered a rope from amazon, but I have battles with myself so I tell my friends immediately when it strikes me that I'm doing something rash. They talked me out of ordering it, I was saying "just in case they never help me here, I'll need it" God, re-reading the conversation makes me feel so upset, to think I was there just yesterday and could be there again tomorrow.



I emailed my GP to try get some tapentadol and a schedule to taper off properly. They agreed, thankfully. I still have an increase of pain. I dunno if it's the injection, the palexia dosage cut,both, some other reason or just one of those days.



I am exhausted. I'm spent. Physically and emotionally I am completely shattered. We are trying to arrange to get me to Spain or Germany where hospitals have said they will do proper testing, meaningful procedures, advice surgery if necessary and not **** me around and respect the pain I'm in. One doctor in Spain even offered to write a prescription to get me something heavy to do a trip to get for me. I got my girlfriend (who lives in spain + is spanish) to look as much information about him as possible and all she could find was really positive stuff. He was super nice in his emails. The hospital in Dusseldorf Germany, while they offered help and their emails made sense, they were very expensive and no good with contact.


Anyway. That's my story with Ireland. If I had to summarise it I would say that every medical professional I've seen seems to hear 'back pain' and just assume it's all grand and that all forms are completely equatable.
I literally can't walk for more than 10 minutes right now and my legs are battered with nerve pain, and I've never once been offered to see a surgeon or get a second opinion or secondary scan. That's not right. This whole thing feels so wrong. I'm not being taken serious and there is very little empathy.
I am suicidal and if I can't get help anywhere I have to try get to switzerland. There's this sentiment that if you need help you need to just call out and you'll be heard. I've been telling every medical professional I meet, I am in incredible pain and they are giving me mickey mouse medication and bollox treatment.


Sorry about any language, anything inappropriate I said.
I hope this story helps anyone going through something similar and who is being made to feel they are completely insane. You're not. This country is. The HSE are a shambles and there's an old boys club.
Oh it also took me four months to get sick leave and I still haven't got a medical card. Those are other stories about nightmare bureaucracy and cold robots on the other end of the phone. I won't describe them here.

You tell people you can barely walk: "ah yea, sure just pop down to the clinic there and we'll have a look". They've no comprehension here, it's an invisible disability and it's treated so badly. There's a war on opioids and injections and imagery at the moment. Patients with severe pain are suffering because of it. Doctors are not scientist, they haven't learned to read between the lines and see the shortcomings of the reviews and clinical trials. Treatment here does no match a thorough understand of medical literature.



Please, feel free to ask any questions. I am actually quite a nice person, I don't want it to be interpreted that I am an angry guy in this. I am completely destroyed by this whole thing. On the 19th it will be seven months with no meaningful progress on the severe nerve and lower back pain and on and off new types of pains. With paracetamol, 900mg of gabapentin, 25mg of amitriptyline and etoflam gel to combat it.



Oh after my epidural, when I was told to quit palexia I was told "you should have never been given that". There's a few things wrong about that. He was saying it like it was my fault - I apologise for being in severe pain and not being able to sleep and seeking help at A&E. It shows he fundamentally does not understand the pain I'm in if he thinks I shouldn't even be tryin 100mg of tapentadol twice a day. I should be on harder stuff. This is insanity. Why do we manufacture these medications anymore if the people in severe pain can't get access to them? I don't even drink alcohol or smoke and have never abused any drugs. I just want pain relief. I've even turned down my friend's offers of green medicine because I don't like the idea of doing something like that outside of medical care.


Anyway, I'll leave it at that. I'm completely miserable and in a bunch of pain. I don't feel like I'm getting the treatment I need and I'm trying to get out of here which will be super difficult. I'll give the injection a week or two to see if it does anything before leaving.