Severe Nerve Pain And Back Pain Story

timsnewbridge

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.

spurious

I have no suggestions for you, I'm afraid, but I want you to know I read all your account and I am so sorry nobody seems to have taken it seriously.


My partner also has persistent back pain (though not even a fraction as bad as yours sounds) and was diagnosed with a herniated disc in her native country (got fed up waiting on an MRI here) which she has been told to carry on as normal with, though 2 and a half years later there is no improvement and she is still waiting on a physio appointment.

I hope you find some relief soon. Is travelling to one of the countries you mentioned even a possibility?

goat2

you say you had blood tests,
are you tired all the time.
have you been checked for lymes disease.
Do you remember hurting your back at any stage

MissGriff

Hey, I'm so sorry your having such an awful time if it. I completely understand what you going through with the pain and wouldn't blame you in the slightest for feeling how you do.
I had lumber surgery 2 yrs ago for a complete herniated disc. Although you said yours isn't, your level of pain seems to be off the charts,the sciatica etc.... there's obviously something wrong. I was losing the use of my left leg after 5 years of the pain and that's when I had the surgery. Had low level pain for years but put it down to my work.
I have an inflammatory arthritis anyway and my rhuematologist( public) just presumed it was affecting my back too. No matter the symptoms he didn't even entertain a separate issue. Anyway he was a knob at the best of times. My GP was always great..she was getting pissed off with him too. She had always said she thought it was disc by how she examined me. So she sent me for MRI independently, and just like she and I thought my disc had literally exploded by that point. Rheumatologist don't really deal with spines and discs exactly, but you would imagine a musculoskeletal expert would recognize a spnal issue!!
Within 10 days I was in Cork (from Limerick)with a neurosurgeon. Lovely man, took so much time explain everything, when through MRI kneeling beside me with his laptop. Although he said there's no guarantee the pain would go or that my reflexes would come back but he had to get the shredded disc pieces out. Now....here's the the thing.....bar the disc situation...turns out the hole where the nerve runs through was too narrow and was also constricting my nerve. And very hard to spot. I wonder has that been explored for you?
Because as well as the disc fixing he removed some bone from the hole to make it wider for the nerve.
Bar my general arthritis my severe back pain is gone, my leg has come back 99% and sciatica gone! So no amount of painkillers, steroid injections, excersise was gonna change that.
Oh...and a new rheumatologist!
It's true that they try to act conservatively with physio, excersise etc and in my opinion they are right.....as a first defence in some cases But if your getting to a point of suicidal thoughts because of the pain well that's just not acceptable from them. Have they explored Piriformis Syndrome? The Piriformis muscle crosses near the sciatic nerve and they can trap each other......and cause pretty much the same symptoms.
Anyway all they are doing is masking the problem.
Just to note also, my brother in law had a spinal fusion 6 weeks ago from bad bulging disc only and boney protrusions. No sciatica or leg problems and a quarter of the pain you or I had/ have..so no one size fits all.

I don't know if any of this helps, but maybe you should re group....new gp, get a referral for a Neurosurgeon maybe.
Please don't give up. If you need to chat please get in touch.

TomOnBoard

I too have read the entirety of your post, and I am very sorry that you're going through this.

A few things for consideration:

1. Why is it that you have a degeneration at L4L5 and the medics all seem to be saying it's not actually impinging on your nerves? Where are you getting the MRIs done and who (no names) is reading them? Like, is it a general Radiologist or a specialist Neuro-Radiologist? Basically, EITHER there is an undiagnosed pressure from something at L4L5 on nerves around there OR the problems in the legs are being caused by something else entirely.

2. Among the meds you mention, there is venlafaxine, gabapentin, xanax and amitriptyline. What was the rationale for these prescription, in relation to the back/leg pain itself? Or, were they prescribed more for the impact the pain is having on your life? Also, the Xanax would not generally figure in a recipe of meds for back pain or sciatica, although it would help as a muscle reliever where bad spasms are being experienced. It would more generally be used to deal with anxiety than pain. The gabapentin would be used to deal with nerve pain as well as having an off-label use for anxiety, while the amitriptyline's primary use would be as a tricyclic anti-depressant with off-label uses on strange pain.

All this is relevant in so far as they would all have a primary role in the anti-anxiety/depression arenas rather than pain relief per se, except for the gabapentin which has the neuropathic pain treatment profile. The bottom line is that I'm wondering are you possibly seeing too many different medics who appear to be treating anxiety and depressive impacts rather than the physical symptoms themselves? Is this possible / likely?

3. Have you got yourself a walking stick? It may seem trite, but as a back & sciatica sufferer, I swear by them ( I use 2 when its very bad) just to make sure I can get out/about and not seize up.

4. Have you used heat packs on your back?

5. Here's the big one: You mention trips to Germany and Spain, and if everything fails, Switzerland. Well, long before considering those, I'd be investigating a trip to Holland and trying to get access to cannabinoidal treatments under a physician there. I'm not talking about 'wacky-backy' coffee shops in Amsterdam- I'm talking about accessing properly titrated treatments of known strains that would not exacerbate any anxiety issues and that would have a 'known/proven' efficacy.

I've probably missed out a lot from your post- it was very detailed and I'm on a phone. I hope I havent mis-read/ mis-interpreted too much.

HTH.

timsnewbridge

spurious wrote: »

I have no suggestions for you, I'm afraid, but I want you to know I read all your account and I am so sorry nobody seems to have taken it seriously.


My partner also has persistent back pain (though not even a fraction as bad as yours sounds) and was diagnosed with a herniated disc in her native country (got fed up waiting on an MRI here) which she has been told to carry on as normal with, though 2 and a half years later there is no improvement and she is still waiting on a physio appointment.

I hope you find some relief soon. Is travelling to one of the countries you mentioned even a possibility?

Thanks to everyone for their comments. I'll reply slowly as I'm taking my mind off things when I can. I'm sorry to hear about your partner. My ex-girlfriend of many year's mam had a similar situation. They were doing nothing here so after months and months she went back to Poland to her home town. Had imagery, injections, more imagery, more injections, better meds, better rehab, all for a fraction of the cost. She's doing better now, roughly the same time scale of your partner, that was about 2 and a half years ago. She was in a car crash and herniated three discs. Getting to Spain would be tough. Car and ferry seem the easiest. We need to make sure it would be worth it of course, so my girlfriend and her mother are calling up places. Thanks for you reply

timsnewbridge

goat2 wrote: »

you say you had blood tests,
are you tired all the time.
have you been checked for lymes disease.
Do you remember hurting your back at any stage

Not consistently tired all the time. On and off but I think it usually has a cause (meds, the injection). Thank you for the suggestion. I was not checked for Lyme's disease. I can't pinpoint in the past when the pain started. But more recently, the one legged deadlifts in March, when things were at a critical point, seemed to send things over the edge of a giant cliff. They checked for inflammatory markers, the prostrate cancer marker, general blood quality (red/ white blood cell stuff). Nothing very specific

Zero Point

Sorry you're going through such a difficult time. I know someone who went through something very similar to what you describe where for years it was considered to be a disc problem and were prescribed all the gruelling exercises too. Years later it emerged that it had been rheumatoid arthritis all along.

While reading down through your situation, the parallels with Lyme disease also struck me as someone else mentioned based on the recent documentary on RTE with similar chronic pain and dark thoughts involved. Interesting that it's never even been considered in your case which is very telling.

It looks at this stage you've exhausted all your efforts with the health service here in finding a cause. You're absolutely right to turn your attention outside the country because it seems like you're on a hiding to nothing here. You could also consider getting a medical tourist visa and heading to India. There you will have access to very affordable, world-class medical specialists in some of the private hospitals with zero waiting time. Do your research first if you consider that option and possibly seek out an internal medicine specialist first.

I think when it comes to cases which are unusual where it's difficult to determine the cause, medical professionals in countries and cities with a greater density of population have a higher exposure to rare illnesses compared to here where doctors might never encounter a similar case in their career.

Were you given any instructions with following an anti-inflammatory diet? While it might not pack a big enough punch for your level of pain, it still should be taken into consideration. I really wish you well. I hope things turn around for you soon and your quality of life improves.

brettmirl

Hi Timnewbridge. Sorry to hear what you are going through.

You've had a bad run of health professionals. Was in a similar situation as yourself. Finding no answers for years. Got the epidurals, tried all the alternative therapies and prescribed medications going.

A good resource is: http://www.chronicpain.ie/who campaign for people living with chronic pain. They have a very helpful Facebook Group of members too which is great for support and advice.

I'm going to DM you the name of a pain management consultant I found excellent. He was very thorough, caring and took time to listen to me and explain the options.

Do try persevere. With bad backs, there are no quick fixes, but do NOT let any medical person talk down to you or belittle your symptoms or level of pain you are going through.

goat2

Watch your diet, It would be nice to know what you eat regularly, as there are food that have an anti inflammatory effect on the body,
and I am wondering if you take omega three just for joints also, it is good for whole body,

Hi Tim, my heart goes out to you.
As someone who suffered from a bulging disc a couple of times, I'm just surprised at all the advice you got at the initial stage to ignore the pain and keep up the strenuous workout/ exercise programme. I have to say the only way I could get relief was to rest, let my body heal and do nothing to exasperate the problem.
I really hope things get better for you.

goat2

inthehat wrote: »

Hi Tim, my heart goes out to you.
As someone who suffered from a bulging disc a couple of times, I'm just surprised at all the advice you got at the initial stage to ignore the pain and keep up the strenuous workout/ exercise programme. I have to say the only way I could get relief was to rest, let my body heal and do nothing to exasperate the problem.
I really hope things get better for you.

I also know someone that had a bulging disc, and yes, the advice was to rest, to calm it down, and take anti inflammoteries to help bring it down,
I should think doing strenuous exercise would annoy and make it worse

timsnewbridge

MissGriff wrote: »

Hey, I'm so sorry your having such an awful time if it. I completely understand what you going through with the pain and wouldn't blame you in the slightest for feeling how you do.
I had lumber surgery 2 yrs ago for a complete herniated disc. Although you said yours isn't, your level of pain seems to be off the charts,the sciatica etc.... there's obviously something wrong. I was losing the use of my left leg after 5 years of the pain and that's when I had the surgery. Had low level pain for years but put it down to my work.
I have an inflammatory arthritis anyway and my rhuematologist( public) just presumed it was affecting my back too. No matter the symptoms he didn't even entertain a separate issue. Anyway he was a knob at the best of times. My GP was always great..she was getting pissed off with him too. She had always said she thought it was disc by how she examined me. So she sent me for MRI independently, and just like she and I thought my disc had literally exploded by that point. Rheumatologist don't really deal with spines and discs exactly, but you would imagine a musculoskeletal expert would recognize a spnal issue!!
Within 10 days I was in Cork (from Limerick)with a neurosurgeon. Lovely man, took so much time explain everything, when through MRI kneeling beside me with his laptop. Although he said there's no guarantee the pain would go or that my reflexes would come back but he had to get the shredded disc pieces out. Now....here's the the thing.....bar the disc situation...turns out the hole where the nerve runs through was too narrow and was also constricting my nerve. And very hard to spot. I wonder has that been explored for you?
Because as well as the disc fixing he removed some bone from the hole to make it wider for the nerve.
Bar my general arthritis my severe back pain is gone, my leg has come back 99% and sciatica gone! So no amount of painkillers, steroid injections, excersise was gonna change that.
Oh...and a new rheumatologist!
It's true that they try to act conservatively with physio, excersise etc and in my opinion they are right.....as a first defence in some cases But if your getting to a point of suicidal thoughts because of the pain well that's just not acceptable from them. Have they explored Piriformis Syndrome? The Piriformis muscle crosses near the sciatic nerve and they can trap each other......and cause pretty much the same symptoms.
Anyway all they are doing is masking the problem.
Just to note also, my brother in law had a spinal fusion 6 weeks ago from bad bulging disc only and boney protrusions. No sciatica or leg problems and a quarter of the pain you or I had/ have..so no one size fits all.

I don't know if any of this helps, but maybe you should re group....new gp, get a referral for a Neurosurgeon maybe.
Please don't give up. If you need to chat please get in touch.

Thank you for your reply. Would you believe I wrote a lengthy resposen twice to you and both times boards spazzed out and it didn't post. I was ragin'
Hopefully this one posts.
I'm so sorry to hear about your ordeal with the rheumatologist. It's sad to say that it absolutely does not surprise me in the least. I'm glad you got it sorted in the end and feel much better. When you say "I wonder has that been explored for you?" The answer is categorically no, for basically anything. One MRI was done, laying down for it and one radiologist looked at it and wrote a report. Every doctor I see reads that one report, won't even look at the images and tells me my spine is fine. I've been told by a neurosurgeon to take x-rays and MRIs in standing and sitting positions and also while bending backwards and forwards, because often it can be that lying flat the disc looks not bad but when you put weight on it and bend you can see that the disc is actually extremely weak and malleable or that there is a lot of instability in that area.
He also recommended a bunch of other stuff, but they're doing nothing here and won't listen to me. I even tried to show them this neurosurgeon's opinion because he emailed me it but I got immediately shut down.
Unless they came up with the plan themselves or their best buddy neuro in the same hospital gave his stamp of approval they just don't want to hear it. It basic human ego getting involved, which is ridiculous.

As for piriformis syndrome. In the early days when the pain was not as bad as it is now I tried weeks of piriformis rehab (multiple types of piriformis stretches etc.) I never found it helped. Also, it started out as lower back pain rather than a burning in my glute. BUT I would still be open for possibilities an testing, you know? As a scientist myself I'd never disregard a hypothesis before it has been fully tested.
I think I'd be offered a fusion / Artificial disc replacement as well given that the disc hasn't herniated (so they can't just remove herniated disc material). But that's if the disc is definitely the pain generator.


Thanks a lot for your reply. I am actually thinking about trying a new GP etc. only problem is that I've seen roughly 7-8 doctors in total so far and ALL have said the same thing. On such a small island with a low population density and a lack a professional diversity I imagine they're used to seeing straight forward cases. I don't disagree that an otherwise healthy young person who's slim and whose MRI does not show a herniation yet is complaining of severe nerve pain is a strange case but they need to start listening and thinking outside the box.

timsnewbridge

TomOnBoard wrote: »

I too have read the entirety of your post, and I am very sorry that you're going through this.

A few things for consideration:

1. Why is it that you have a degeneration at L4L5 and the medics all seem to be saying it's not actually impinging on your nerves? Where are you getting the MRIs done and who (no names) is reading them? Like, is it a general Radiologist or a specialist Neuro-Radiologist? Basically, EITHER there is an undiagnosed pressure from something at L4L5 on nerves around there OR the problems in the legs are being caused by something else entirely.

2. Among the meds you mention, there is venlafaxine, gabapentin, xanax and amitriptyline. What was the rationale for these prescription, in relation to the back/leg pain itself? Or, were they prescribed more for the impact the pain is having on your life? Also, the Xanax would not generally figure in a recipe of meds for back pain or sciatica, although it would help as a muscle reliever where bad spasms are being experienced. It would more generally be used to deal with anxiety than pain. The gabapentin would be used to deal with nerve pain as well as having an off-label use for anxiety, while the amitriptyline's primary use would be as a tricyclic anti-depressant with off-label uses on strange pain.

All this is relevant in so far as they would all have a primary role in the anti-anxiety/depression arenas rather than pain relief per se, except for the gabapentin which has the neuropathic pain treatment profile. The bottom line is that I'm wondering are you possibly seeing too many different medics who appear to be treating anxiety and depressive impacts rather than the physical symptoms themselves? Is this possible / likely?

3. Have you got yourself a walking stick? It may seem trite, but as a back & sciatica sufferer, I swear by them ( I use 2 when its very bad) just to make sure I can get out/about and not seize up.

4. Have you used heat packs on your back?

5. Here's the big one: You mention trips to Germany and Spain, and if everything fails, Switzerland. Well, long before considering those, I'd be investigating a trip to Holland and trying to get access to cannabinoidal treatments under a physician there. I'm not talking about 'wacky-backy' coffee shops in Amsterdam- I'm talking about accessing properly titrated treatments of known strains that would not exacerbate any anxiety issues and that would have a 'known/proven' efficacy.

I've probably missed out a lot from your post- it was very detailed and I'm on a phone. I hope I havent mis-read/ mis-interpreted too much.

HTH.

Hey, thanks a lot for your comments. I'll take on board that you were on the phone while writing, I appreciate your reply nonetheless!


I agree with what you are saying in 1.

On the MRI the disk is degerate but it is not bulging nor herniated. So it is not focally touching a nerve. The MRIs were both done in the vista centre in Naas and both were read by the same radiologist and it is his report all other doctors are going on (none have agreed to have a look at it). I never got a second opinion on them besides independently myself from three different neurosurgeons. All of them have said roughly the same thing. As you said, perhaps the pain is coming from somewhere else (eg the sacrum) but much more likely, the disc has tears in it not resolved on the MRI. That I should do repeat imagery in weightbearing positions as well as bending forward and backward. The disc might flatten out completely when sitting (the most painful position) but when lying down, perhaps without pressure it doesn't look too bad. I was also told that exudate from a torn disc can cause inflammation in the foramin causing the nerve pain and this would not even show on an MRI. You would have to test by applying local anesthetic or doing a discogram. And the next thing I'm going to say is an anecdote but I have spoken to many people in the last 7 months trying to figure out what's going on and one of them had a very similar story to me, MRI shoed nothing but a degenerate disc, severe nerve pain etc, finally got a neurosurgeon who offered to go in and investigate and decide what to do when he was in there, well his disc was basically split into three parts, technically it was bonded very weakly along the tears but it came out in three parts. Something like that would not show on an MRI. Ouch!


2. So I'll start with gabapentin. As you say, off label it is used for nerve pain. But actually reviews show it is ineffective for lumbar radicular pain (I can testify for this). It is more used for diabetic and post-herpethic neruopathy for which studies show it is effective. But they've been using gabapentin for the past 30 years anyway for any type of nerve pain simply because 'It is used for nerve pain'. I've brought this up with multiple doctors now and even showed the pain management registrar in tallaght hospital reviews and she stood there awkwardly and said "I'll eh, read this later... but eh, I guess just keep taking it". She was a nice person, but fug me. Stop prescribing this ****e for disc issues!
Next is venlafaxine, well reviews show that a combination of gabapentin and venlafaxine may be more effective than gabapentin alone, but again this is for other types of nerve pain.
Amitriptyline was to help with sleep and also to see if it might have an effect on the nerve pain + treat the mood issues caused by this.
I think xanax was for sleep as well.
"are you possibly seeing too many different medics who appear to be treating anxiety and depressive impacts rather than the physical symptoms themselves? Is this possible / likely?" absolutely. They seem very focused on treating the anxiety/ depression rather than diagnosing the actual pain and treating that.


3. Not a walking stick but I do have one of those zimmer-frames and it helps to some degree with standing in the house for a bit longer. Thanks for the suggestion though, I will try one and then get one if it benefits.


4. Unfortunately it makes the pain worse, particularly the nerve pain. My back is actually tender and inflamed. as if it was injured yesterday, you know? So you might be inclined to say to ice it then but I've not found that it helps either.



5. Thank you for that tip. I'll definitely investigate it. A lot of people either online or off and said to try the CBD oil or even cannabis. I'm actually already looking in to ordering some CBD oil, I guess I can't comment on the cannabis



Thanks again for your reply!

timsnewbridge

Zero Point wrote: »

Sorry you're going through such a difficult time. I know someone who went through something very similar to what you describe where for years it was considered to be a disc problem and were prescribed all the gruelling exercises too. Years later it emerged that it had been rheumatoid arthritis all along.

While reading down through your situation, the parallels with Lyme disease also struck me as someone else mentioned based on the recent documentary on RTE with similar chronic pain and dark thoughts involved. Interesting that it's never even been considered in your case which is very telling.

It looks at this stage you've exhausted all your efforts with the health service here in finding a cause. You're absolutely right to turn your attention outside the country because it seems like you're on a hiding to nothing here. You could also consider getting a medical tourist visa and heading to India. There you will have access to very affordable, world-class medical specialists in some of the private hospitals with zero waiting time. Do your research first if you consider that option and possibly seek out an internal medicine specialist first.

I think when it comes to cases which are unusual where it's difficult to determine the cause, medical professionals in countries and cities with a greater density of population have a higher exposure to rare illnesses compared to here where doctors might never encounter a similar case in their career.

Were you given any instructions with following an anti-inflammatory diet? While it might not pack a big enough punch for your level of pain, it still should be taken into consideration. I really wish you well. I hope things turn around for you soon and your quality of life improves.

Hi thank you for your comments! Everyone I talk to has a story about a person they know(or indeed about themselves) who had been messed around for years before getting the proper diagnosis and treatment. It's terrifying. Thanks for the advice about India. Getting there would be considerably more difficult than getting to Spain. But I'll look into it any way. I have a finite amount of money and will power (in these levels of pain).



I think when it comes to cases which are unusual where it's difficult to determine the cause, medical professionals in countries and cities with a greater density of population have a higher exposure to rare illnesses compared to here where doctors might never encounter a similar case in their career. - yup, very well said! This is definitely true!

As for an anti inflammatory diet, I already followed one, before I even got sick / injured. I eat a plant-based wholefood centric diet. No meat, dairy or any other animal product. I also only drink water and teas (and no sugar int the tea), so no soft drinks, coffee, mi-wadi stuff etc.. Basically I eat a lot of veg, fruit, whole grain carbs and low salt/fat protein sources. I've followed an app (chronometer) for a couple of months at one time to make sure I was getting enough nutrients and I was always hitting the marks. Generally no crisps, candy or anything like that either, I'd have them very rarely. Even popcorn I might eat one every 2-3 weeks.



I really wish you well. I hope things turn around for you soon and your quality of life improves. - Thank you. I hope so too. It really feels completely out of my hands. I consistently eat well, don't drink, smoke or abuse drugs. I am not overweight. I try to stay active while not irritating things further. I was very active before this and still have some muscles from that. It's down to finding a surgeon or a better pain management doc I think.

timsnewbridge

brettmirl wrote: »

Hi Timnewbridge. Sorry to hear what you are going through.

You've had a bad run of health professionals. Was in a similar situation as yourself. Finding no answers for years. Got the epidurals, tried all the alternative therapies and prescribed medications going.

A good resource is: http://www.chronicpain.ie/who campaign for people living with chronic pain. They have a very helpful Facebook Group of members too which is great for support and advice.

I'm going to DM you the name of a pain management consultant I found excellent. He was very thorough, caring and took time to listen to me and explain the options.

Do try persevere. With bad backs, there are no quick fixes, but do NOT let any medical person talk down to you or belittle your symptoms or level of pain you are going through.

Thank you very much. I'll check out the website and respond to the mail I see you've sent me. I'm getting back to things slowly. From a mental health perspective I try to only invest so much time online discussing/reading about anything spine/pain related in the past 2 months.

timsnewbridge

goat2 wrote: »

Watch your diet, It would be nice to know what you eat regularly, as there are food that have an anti inflammatory effect on the body,
and I am wondering if you take omega three just for joints also, it is good for whole body,

Hello, I follow an anti inflammatory diet (plant based and whole foods centric). I do not drink any sugary drinks, in fact, all I drink is water and teas. I input my daily foods into an app called chronometer, it gives you an exact nutrient break down for the day, for about 2 months. I was always hitting the right nutrients and the right nutrient ratios (zinc/copper omega3/omega6 for examples). I think the diets on point personally. Anything small optimisation I could possibly do would be like trying to put out a bonfire with a cup of water.


Thank you very much for your reply!

Edit: just to clarify, as a fail safe, I take a multi vit + iron supplement and a vit b12 supp every day anyway

timsnewbridge

inthehat wrote: »

Hi Tim, my heart goes out to you.
As someone who suffered from a bulging disc a couple of times, I'm just surprised at all the advice you got at the initial stage to ignore the pain and keep up the strenuous workout/ exercise programme. I have to say the only way I could get relief was to rest, let my body heal and do nothing to exasperate the problem.
I really hope things get better for you.

Thanks very much. It's always very awkward when I bring this stuff up with doctors and newer physios. They try to phrase things to blame me. I explicitly say "Joe Bloggs from X clinic told me to do this _clearly stupid thing_ and it made things much worse" and they're like.... "mumble mumble well it seems YOU went to town with the core exercises and it didn't help"
It seems like resting isn't healing me up unfortunately. I think if there's some damaged or diseased tissue it needs to be excised to I can then rehabilitate from the procedure and try get a semblance of a life back.
Well, that would be the best case scenario!



Thanks for your comment!

timsnewbridge

goat2 wrote: »

I also know someone that had a bulging disc, and yes, the advice was to rest, to calm it down, and take anti inflammoteries to help bring it down,
I should think doing strenuous exercise would annoy and make it worse

It's a no-brainer really. I always felt bad not following a doctor's / physio's advice though. After 2 years now I'm saying no more. Something is incredibly wrong with all the advice I've gotten and all the ongoing treatment/care

MissGriff

timsnewbridge wrote: »

Thank you for your reply. Would you believe I wrote a lengthy resposen twice to you and both times boards spazzed out and it didn't post. I was ragin'
Hopefully this one posts.
I'm so sorry to hear about your ordeal with the rheumatologist. It's sad to say that it absolutely does not surprise me in the least. I'm glad you got it sorted in the end and feel much better. When you say "I wonder has that been explored for you?" The answer is categorically no, for basically anything. One MRI was done, laying down for it and one radiologist looked at it and wrote a report. Every doctor I see reads that one report, won't even look at the images and tells me my spine is fine. I've been told by a neurosurgeon to take x-rays and MRIs in standing and sitting positions and also while bending backwards and forwards, because often it can be that lying flat the disc looks not bad but when you put weight on it and bend you can see that the disc is actually extremely weak and malleable or that there is a lot of instability in that area.
He also recommended a bunch of other stuff, but they're doing nothing here and won't listen to me. I even tried to show them this neurosurgeon's opinion because he emailed me it but I got immediately shut down.
Unless they came up with the plan themselves or their best buddy neuro in the same hospital gave his stamp of approval they just don't want to hear it. It basic human ego getting involved, which is ridiculous.

As for piriformis syndrome. In the early days when the pain was not as bad as it is now I tried weeks of piriformis rehab (multiple types of piriformis stretches etc.) I never found it helped. Also, it started out as lower back pain rather than a burning in my glute. BUT I would still be open for possibilities an testing, you know? As a scientist myself I'd never disregard a hypothesis before it has been fully tested.
I think I'd be offered a fusion / Artificial disc replacement as well given that the disc hasn't herniated (so they can't just remove herniated disc material). But that's if the disc is definitely the pain generator.


Thanks a lot for your reply. I am actually thinking about trying a new GP etc. only problem is that I've seen roughly 7-8 doctors in total so far and ALL have said the same thing. On such a small island with a low population density and a lack a professional diversity I imagine they're used to seeing straight forward cases. I don't disagree that an otherwise healthy young person who's slim and whose MRI does not show a herniation yet is complaining of severe nerve pain is a strange case but they need to start listening and thinking outside the box.

I'm sorry I only saw your reply now.
Your certainly right about the ego's. And also ' the computer says no'.... attitudes. But there are some that are decent and want to get to the bottom of things. Unfortunately you haven't met them yet.
I found the neurosurgeon I saw was the most down to earth, humble man. I can send you his name if you want it. Plus I'm blessed to have a great GP. The nuero and a Ortho in Dublin are her 2 top picks for referring.

There is another thing the rhuematologist may have checked that time in your bloods...it's a marker for Ankylosing Spondylitis or HBL 27. A type of inflammatory arthritis that seriously affects the lower back. Mostly men your age too. Also as you mentioned the sacrum, there's also a condition called Sacrilitis. .. arthritis of the sacriliac joints. It's where your hip joints attach to your pelvis.

Listen I don't mean to stress you out even more, or add to the confusion but with alot of these conditions , they all have extremely similar symptoms to disc, nerve, bone issues.
Sometimes if they are inflammatory in nature they don't show up as easily on scans etc compared to wear and tear arthritic conditions like osteo or obvious disc problems.
These tidbits of info are just from my own experiences, research, asking questions and having the tests,with my own arthritic issues.
" Knowledge is power...'

No need to reply if your not up to it. So keep the chin up, try stay a little bit positive.
I believe there is someone out there who will help you. No one deserves what your going through.
And your not crazy...only you know your body and your body is telling you something is wrong.
So, Do NOT let it or them break you down!!

MD1990

Very sorry to hear about your pain.

I have had some over use injuries myself & many physio's etc are very poor at treating them.

Maybe you should try Santry Sports Clinic.
They are very highly regarded especially Falvey who could refer you to a specialist that could help. Would have many contacts.

TomOnBoard

MD1990 wrote: »

Very sorry to hear about your pain.

I have had some over use injuries myself & many physio's etc are very poor at treating them.

Maybe you should try Santry Sports Clinic.
They are very highly regarded especially Falvey who could refer you to a specialist that could help. Would have many contacts.

+1 for Santry. They deal with things like this every single day. I find them so easy to deal with compared to others. Certainly worth a neuro-surgery consultation...

Pretzill

I read your OP whilst in the throes of pain at the weekend - I have been having a touch of sciatica down one leg, on Saturday after a morning hoovering and mopping I couldn't get up from a seated position without help - it felt like my back had fallen into my ass and I think you described it well - it was an anchor weighing me down. The pain was of the shout out loud variety - I crawled to bed and had fitful sleep - the pain was terrible. By morning getting out of bed was easier and as the day wore on the pain had subsided.

I have had this before. Thankfully only for a few days how you are struggling on, with this for months is beyond me. I really worry for our health services and how they can treat someone with such disregard.

Have you thought about seeking a second opinion north of the border? Just a suggestion I don't know if you will be met with the same lack of interest, or medicate approach.

I hope you find relief soon. I know most reccomend exercise but if I get spasms the only thiing that works is rest and cold compress, never heat and never massage.

timsnewbridge

MissGriff wrote: »

I'm sorry I only saw your reply now.
Your certainly right about the ego's. And also ' the computer says no'.... attitudes. But there are some that are decent and want to get to the bottom of things. Unfortunately you haven't met them yet.
I found the neurosurgeon I saw was the most down to earth, humble man. I can send you his name if you want it. Plus I'm blessed to have a great GP. The nuero and a Ortho in Dublin are her 2 top picks for referring.

There is another thing the rhuematologist may have checked that time in your bloods...it's a marker for Ankylosing Spondylitis or HBL 27. A type of inflammatory arthritis that seriously affects the lower back. Mostly men your age too. Also as you mentioned the sacrum, there's also a condition called Sacrilitis. .. arthritis of the sacriliac joints. It's where your hip joints attach to your pelvis.

Listen I don't mean to stress you out even more, or add to the confusion but with alot of these conditions , they all have extremely similar symptoms to disc, nerve, bone issues.
Sometimes if they are inflammatory in nature they don't show up as easily on scans etc compared to wear and tear arthritic conditions like osteo or obvious disc problems.
These tidbits of info are just from my own experiences, research, asking questions and having the tests,with my own arthritic issues.
" Knowledge is power...'

No need to reply if your not up to it. So keep the chin up, try stay a little bit positive.
I believe there is someone out there who will help you. No one deserves what your going through.
And your not crazy...only you know your body and your body is telling you something is wrong.
So, Do NOT let it or them break you down!!

Hi, if you could mail me the names of your GP and neuro +ortho you have seen that would be great, thank you very much!
So, 6 months ago my GP send a blood test off for HLA-B27, we got a reply from the hospital 'a Rheumy must sign off on this test'. So my doctor didn't bother following it up and asking a rheumy for a sign off. I will say that again I highly doubt it, simply because of the way in which AS and arthritic pain presents in general. BUT I think a bone scan and x-ray and a test for HLA-B27 could be beneficial for ruling it out. If it was found to be likely I guess a transforminal epidural injection at L4/L5 could be beneficial. I dunno. But my doc don't listen to me.
I have also asked about sacroilitis.

You're dead right to suggest these. It is definitely confusing and requires a rigorous investigation. Unfortunately my GP isn't on board with that nor has any specialist I've seen been. In all seriousness they seem to be completely dense and uncaring.


Thanks for the encouragement. It is difficult but you're probably right, someone out there can help me either manage the pain or resolve it with a procedure.

timsnewbridge

MD1990 wrote: »

Very sorry to hear about your pain.

I have had some over use injuries myself & many physio's etc are very poor at treating them.

Maybe you should try Santry Sports Clinic.
They are very highly regarded especially Falvey who could refer you to a specialist that could help. Would have many contacts.

Thank you for the suggestion. I have a long list of names of people who I'm recommended to contact. One of the biggest problems is the constraints of time and money. I need to find someone who understands that at the very least my case is non-trivial and further investiagtion is required in order to form a more concrete diagnosis. I wait weeks to see someone, pay the a 200 quid to see that they are just like the previous doctor in thought process and empathy. It is a nightmare :-(

timsnewbridge

TomOnBoard wrote: »

+1 for Santry. They deal with things like this every single day. I find them so easy to deal with compared to others. Certainly worth a neuro-surgery consultation...

Thank you, any neuro in particular?

blackdog1

timsnewbridge wrote:

Thank you for the suggestion. I have a long list of names of people who I'm recommended to contact. One of the biggest problems is the constraints of time and money. I need to find someone who understands that at the very least my case is non-trivial and further investiagtion is required in order to form a more concrete diagnosis. I wait weeks to see someone, pay the a 200 quid to see that they are just like the previous doctor in thought process and empathy. It is a nightmare :-(

Keith synott in Santry is excellent. He did my back and I'm flying since. I had a bulging disc which was leaking and pressing on a nerve. He sorted it before it became a huge problem. I wouldn't let it go that much further if I was you. If you leave this for years it can cause numbness and damage the nerve and you could end up losing feeling down your leg for a long time.

TomOnBoard

timsnewbridge wrote: »

Thank you, any neuro in particular?

Sorry, I don't have a specific name recommendation

timsnewbridge

blackdog1 wrote: »

Keith synott in Santry is excellent. He did my back and I'm flying since. I had a bulging disc which was leaking and pressing on a nerve. He sorted it before it became a huge problem. I wouldn't let it go that much further if I was you. If you leave this for years it can cause numbness and damage the nerve and you could end up losing feeling down your leg for a long time.

Thanks!

timsnewbridge

TomOnBoard wrote: »

Sorry, I don't have a specific name recommendation

Grand, thanks anyway!

d8491prj5boyvg

Hi OP

I can empathise a lot with this post. Last year I had a similar back issue. Excruciating, no sleep, life wasn't worth living for a while.

I had niggling back pain and sciatica for 6 months or a year beforehand. A little uncomfortable in the morning but after a shower and a walk to work it was minor. Then it all started to kick off. One night away in terrible bed and i woke up in excruciating pain. The underlying issue was raised up a few notches from then on. I couldn't sit without pain and I could get 3-4 hours sleep max per night. I used to go for mid-night walks to relieve the pain.

MRI showed an L4L5 bulge and i woke up a few times to numb/partially paralysed leg. Very scary.

I had been doing exercise, weights, mckenzie extensions when it first kicked off to help the mild sciatica and I think that made it worse. After a while i stopped all exercises, except for some walking and light cycling and it started to get better.

One thing that was mentioned to me was a potential build up of scar tissue around the nerve that can restrict it's movement. I was doing "flossing" exercises that i think might have helped me. Also, Apparently the back is hard to heal as not as well served by blood supply,etc as other parts of the body, but a little movement can stimulate this. I interpret that as regular daily movement as opposed to deadlifts and that might have helped me also.

Anyway, at the height of it all I felt the similar dispair and it gradually worked itself out. It sounds like you are at the peak of the problem so keep plugging away, this is the worst moment, you'll hit on something that helps your situation.

timsnewbridge

Joyce Shrilling Stereo wrote: »

Hi OP

I can empathise a lot with this post. Last year I had a similar back issue. Excruciating, no sleep, life wasn't worth living for a while.

I had niggling back pain and sciatica for 6 months or a year beforehand. A little uncomfortable in the morning but after a shower and a walk to work it was minor. Then it all started to kick off. One night away in terrible bed and i woke up in excruciating pain. The underlying issue was raised up a few notches from then on. I couldn't sit without pain and I could get 3-4 hours sleep max per night. I used to go for mid-night walks to relieve the pain.

MRI showed an L4L5 bulge and i woke up a few times to numb/partially paralysed leg. Very scary.

I had been doing exercise, weights, mckenzie extensions when it first kicked off to help the mild sciatica and I think that made it worse. After a while i stopped all exercises, except for some walking and light cycling and it started to get better.

One thing that was mentioned to me was a potential build up of scar tissue around the nerve that can restrict it's movement. I was doing "flossing" exercises that i think might have helped me. Also, Apparently the back is hard to heal as not as well served by blood supply,etc as other parts of the body, but a little movement can stimulate this. I interpret that as regular daily movement as opposed to deadlifts and that might have helped me also.

Anyway, at the height of it all I felt the similar dispair and it gradually worked itself out. It sounds like you are at the peak of the problem so keep plugging away, this is the worst moment, you'll hit on something that helps your situation.

Thanks very much for the words of encouragement. I hope I'll get out of this situation somehow. I'm also pretty sure the weight lifting, stretches and other stuff made it worse and have also concluded that walking is all I should do (cycling is out of the equation).

For anyone else following this thread. A surgeon in Spain is assisting me with referrals to get all the necessary imagery done. I tried again to tell my GP the meds aren't working and I should be allowed to see a surgeon and a neurologist. Again he insisted psychiatry, but he caved and wrote a referral to Ashley Poyton and a neurologist (can't remember the name). He wouldn't change medication.

I sent an email to the pain management doctor with reviews of gabapentin showing it's inefficacy for lumbar radicular pain and he never replied. It's difficult to be in pain and to have to show these dinosaurs they are not up to date with the evidence. It's easier for them to just label you a problem patient. But I'm going to fight this is any way I can.

I think that when a patient is in severe pain and the medical system is refusing them access to specialists and appropriate medication it could be a definition of torture.

wakka12

I'm absolutely shocked by how indifferent or else just outright rude the medical staff you've hired have been , is it common practice to treat patients like they're insane and dramatic if their pain is caused by an illness they might not be familiar with ?

timsnewbridge

wakka12 wrote: »

I'm absolutely shocked by how indifferent or else just outright rude the medical staff you've hired have been , is it common practice to treat patients like they're insane and dramatic if their pain is caused by an illness they might not be familiar with ?

I can't say for how it is outside my experience, I seem to have been just very unlucky I guess. If it's like this all over the country/world then I don't even know what to think. I've been nothing but kind and articulate with all these people, visibly upset (by an air of total resignation and defeat) by the situation but never angry or hostile. I am going to tell the pain management doctor on the 27th I don't want the state giving him money any more for he is an awful person and I'm requesting a referral to a different doctor. I think I'm a bit of a push over but I'm totally fed up now.

J6P

By the sounds of things, your willing to try anything so have you considered meeting with or seeing a chiropracter?

I got recomended one over the summer for lower back pain that has been on and off for years. I have been satisfied with the results,been about 6 or 8 times and will have my last session next month.

Dont go if you dont have an open mind.

I read all the horror stories beforehand about chiropracters but was willing to give it a shot on a work collleagues advice.

Pm me if you want more detail and his contact number.

Vetch

I'm due to have surgery on a disc. The consultant works out of both Cappagh and the Beacon. I'd have to pay an excess on my health insurance to go to the Beacon. It's the same surgeon either way but from looking at Cappagh's website I might be on a ward rather than semi-private/private room. Just wondering if anyone has experience of Cappagh or if it's worth paying the excess to go to the Beacon?

TomOnBoard

Vetch wrote: »

I'm due to have surgery on a disc. The consultant works out of both Cappagh and the Beacon. I'd have to pay an excess on my health insurance to go to the Beacon. It's the same surgeon either way but from looking at Cappagh's website I might be on a ward rather than semi-private/private room. Just wondering if anyone has experience of Cappagh or if it's worth paying the excess to go to the Beacon?

The surgeon is only one (albeit crucially important) member of the team that will perform the surgery and provide the after care.

As Cappagh is the national public orthopaedic hospital, I'd expect the team to have more experience than the Beacon, but the surroundings will probably be better in the Beacon. Chances are, you may even wind up in a public bed in Cappagh, as they will have limited availability of private/semi private beds.

Ask questions about things like post-op infection rates in each place and factored that in. If you're only in for a day or two, the surroundings are less important.. For me, the standard of surgery team and post op care is waaay more important than the hotel elements..

Weyhey

God love you Tim and anyone else who suffers with back pain.

Just wondering if Tim or anyone here after all medical avenues told you not much more could be done did you ever look into TMS and Dr John E. Sarno. The 20/20 news clip was quite interesting and so is his book. I am very tempted to follow the 42 day programme as I have nothing to lose medically.

Graces7

If there is any way you can get to Spain etc, DO IT

I lost 30 years of my working life to a similar scenario in the UK. ie medical junk.

Just go and find proper help? Please , rather than follwoing idea after idea with no proper diagnosis or tests .

Praying for you here and that means a lot

.......

OMG you poor thing!! This is awful.

You need to get a proper diagnosis. You are being bounced around the system by people who dont care.

Please do try the Santry Sports Clinic. Or abroad.

horsey63

....... wrote: »

OMG you poor thing!! This is awful.

You need to get a proper diagnosis. You are being bounced around the system by people who dont care.

Please do try the Santry Sports Clinic. Or abroad.

I second Santry Sports Clinic, ended with with a spinal fusion following 2 microdiskectomies, with Michael Kelleher, and all I can say is its the best thing I ever did and life is great

skallywag

Tim, have you even thought that the pain might actually be coming from your hip, and not the back?

I have suffered here before and the pain would sometimes seems to come from the back / leg region. A simple X-Ray / MRI might be an idea, just to rule it out.

Mad_maxx

wakka12 wrote: »

I'm absolutely shocked by how indifferent or else just outright rude the medical staff you've hired have been , is it common practice to treat patients like they're insane and dramatic if their pain is caused by an illness they might not be familiar with ?

Pain is for the most part not taken seriously by the majority of medics in this country, then there is the fact that doctors only listen to reports and scan results, they don't listen to the patient

I'm considering going abroad myself, been in terrible pain every say now since June 1st 2018, s twenty five kg block block fell four feet onto my foot, remarkably nothing has shown up in scans or xray

Then there is the near puritanical culture surrounding pain medication, we are the opposite of the usa in this regard, panadol is useless for anything bar a mild headache, I too have been suicidal on occasion, will probably seek help abroad, we really do have an unbelievably ****e health service and I've found the bulk of doctors are no good, even you do eventually get to see one

Graces7

Mad_maxx wrote: »

Pain is for the most part not taken seriously by the majority of medics in this country, then there is the fact that doctors only listen to reports and scan results, they don't listen to the patient

I'm considering going abroad myself, been in terrible pain every say now since June 1st 2018, s twenty five kg block block fell four feet onto my foot, remarkably nothing has shown up in scans or xray

Then there is the near puritanical culture surrounding pain medication, we are the opposite of the usa in this regard, panadol is useless for anything bar a mild headache, I too have been suicidal on occasion, will probably seek help abroad, we really do have an unbelievably ****e health service and I've found the bulk of doctors are no good, even you do eventually get to see one

Am only held together by codeine, stable on a safe dosage for many years with full medical/consultant approval. When I moved here my notes went astray and I encountered the "codeine hysteria" we have inherited from the US. It took many months to sort out and what we can still buy OTC eg solpadeine and nurofen plus were not enough.
I finally got back to my routine meds through managing to contact my retired previous GP , and the sheer relief.

It can be done. Please persevere?

the14thwarrior

so sorry for your pain.
i think you have not been seeing the right people and therefore are on a merry go around of people who are not qualified or experienced enough to figure out the problem. Its a difficult problem. if it can't be seen straight away, it needs deeper investigation by a neuro surgeon. SIMPLE , PLEASE DO THIS
you need to figure out the problem with your nerve.
by ending up in a pain clinic and having a list of doctors who can't help you, you may have acquired the label of someone who is in chronic pain and cant be helped medically. taking all sorts of meds which are not really helping.
a rheumatologist cant help with disc issues.
a GP who has no experience of such
asking surgeons over the phone
radilogists looking for bone abnormalities
chiropractors ? really?don't go there (not for your condition)
osteopractioners? don't bother. (not for your condition)
Physio (exercise you do not need, you need to get the pressure off your nerve. if it hasn't worked so far, don't bother). after you figure out the problem, you will do exercises and get your muscles back)

sorry, you need to get off this terrible path.
there are good neuro surgeons in this country.
synot very good but there are a few, only a few do public. look them up.
i've had back issues, my two sisters.
i didn't hesitate by going private for my sister and she was operated on in three months. after enduring hell.
i was told my only option was spinal fusion, but that i would fuse normally perhaps? yes, i did, after a year or so. but at least i knew. i waited a year for this excellent advice, but i could have paid privately. i went private seperately and was told they would try to operate. I endured three years of hell, chronic pain clinics, injections, pyschological counselling, depression, anger, it must be me not my back mindset
the more stressed you become, the more stress on your back, tight muscles, muscles then don't work, more pressure on nerve, more pain, more dsyfunction,
my sister was operated on as she didn't want to / couldn't do rehab and the neuro surgeon said let's save ourselves a year.

think of your back like a complicated car electronic fault. you only bring it to people who can really diagnoise with the right machines.

PLEASE TRUST ME. GET YOURSELF TO A NEURO SURGEON.
Write out a list of medications, write out a time frame, date of injury a brief summary of actions taken, in a table format. etc. surgeons want the complete picture but will zone out if all they hear is I'm in pain and all doctors can't help me. and it will help them formulate a plan.

banie01

I'd echo the advice offered.
Get yourself reviewed by a Neurosurgeon.
The other piece of advice I'd offer is getting your GP to refer to your local Pain Management Team/Specialist as an urgent referral.

The medication options available for neuropathic pain are quite effective and can make a massive difference to ongoing quality of life until you hopefully get the intervention needed.

Mazzab

[did you ever go to Spain?


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